[CMLHope] CML Awareness Day/World CML Day is 9/22/13
Hi all - September is celebrated by many as Blood Cancer Awareness Month, or as Leukemia Awareness Month, or as both. The date of September 22, or 9/22, is celebrated as World CML Day in many countries and as CML Awareness Day in the US. The date represents the genetic change of Chromosomes 9 and 22 that causes CML. For US patients, the National CML Society is hosting *A National Day of Advocacy* in Washington, D.C. to bring greater awareness to the issues faced by US CML patients, including discriminatory practices which result in higher co-pays for oral cancer treatments. Lawmakers will be encouraged to support the Cancer Drug Parity Act of 2013. To learn more about this, and to participate, please visit this link: http://www.nationalcmlsociety.org/event/national-day-advocacy-washington-dc For all CML patients, the member organizations of the CML Advocates Network are hosting *World CML Day *activities, which include an opportunity for patients to submit their own video about their personal CML journey. For more information on the global World CML Day events, and to participate, please visit this link: http://www.cmladvocates.net/worldcmlday/worldcmlday2013 I hope those who participate in CML and/or Leukemia awareness activities will share your plans, stories and activities with others. It's one thing to hear a doctor say you can live well with CML, but hearing that from a fellow CMLer has much more meaning and impact. Warm regards, Pat Elliott Phoenix, Arizona CML patient and advocate -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
RE: [CMLHope] Re: Back on Gleevec
Hi Beth- I'm not sure what you're asking, but there's clinical trial data showing elevated CPK levels are a rare side effect found with Gleevec. Clinical Laboratory Tests: Estimated 0.1%-1%: blood CPK increased //Source: http://www.drugs.com/pro/gleevec.html I didn't find data indicating this as a side effect with Sprycel but Gleevec has been studied in trials longer and there's typically more data available there. You may find it helpful to research information for other conditions that cause an elevated CPK level and, of course, to work with your medical team too. This link provides some basic info on CPK levels and also lists other conditions: http://www.nlm.nih.gov/medlineplus/ency/article/003503.htm Hope this helps you get some answers soon! Take care. Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of bkbar...@aol.com Sent: Thursday, August 01, 2013 10:58 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: Back on Gleevec Dear Sylvia, I am sorry your break did not hold your numbers. I am however, grateful that you respond to gleevec and that your old friend is, with side effects and all, still a very powerful allie. You have a great attitude about it. Just so you don't feel alone, I went off sprycel for 7 weeks, and lost my MMR during that time. I was dissapointed, but relieved that when I went back on, the med worked quickly to get me back in line. Now it's just trying to navigate the side effects...Still trying to find a way to bring down my CPKI am researching this as much as I am able...anyone who has any ideas about it, please let me know!!! Pat? Any suggestions?? Take care Sylvia, we are all here to chat with...so we are walking the path together. Warm thoughts and good care to all.Take good care, Beth -Original Message- From: Richard H richard1huff...@comcast.net To: cmlhope cmlhope@googlegroups.com Sent: Thu, Aug 1, 2013 9:29 pm Subject: [CMLHope] Re: Back on Gleevec Sorry to hear that the vacation didn't work. Richard H. On Thursday, August 1, 2013 8:04:09 PM UTC-5, Sylvia wrote: Hi everyone I wrote about 2 months ago that after 12 yrs on Gleevec I was going to take a break and go off for a while. My dr wasn't too pleased and said i needed to come back in a month for a PCR. Well my results went from a 4.5 log reduction to a 2.8 log reduction. That's a lot in 1 month. So I am back on Gleevec. It's like welcoming back an old friend. I am thankful for Gleevec as many of my CML friends didn't live long enough to try it. Blessings to all Sylvia Guenther Dx 6/98 -- -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
RE: [CMLHope] Doctors Visit
Hi Greenie - The watery eyes are caused by the way Gleevec dries up the eyes. It may sound strange but the solution that many patients use is daily use of lubricating eye drops. Some patients use basic lubricating drops and some use the artificial tears type of drops. Some put in drops once a day, some do this in the morning and at the end of the day. Here is additional information from a presentation by Dr. Druker's nurse, Carolyn Blasdel. Hope you find this helpful! Pat Eyes Swelling around the eyes (periorbital edema)-one of my patients calls it pig- eye. This is probably the most common Gleevec side effect. Excessive tearing is common. Blurry vision with tearing happens. Also, bleeding into the whites of the eyes (sub-conjunctival hemorrhages) occurs. A blood vessel breaks and you feel a stinging pain. There is bright red blood in the white of the eye. It's very scary looking, but it is not serious. To treat this we use artificial tears, even when you are having excessive tearing. Using additional tears can help keep the eyes washed out. Prescription steroid eye drops has been helpful for some people. If you are having a lot of trouble with tearing, I encourage you to see an ophthal- mologist so that he/she can look to see if any mechanical problems can be cor- rected. There is no treatment needed for sub-conjunctival hemorrhages. The body absorbs the blood on its own and the eye will return to normal without any permanent damage From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of myvet...@aol.com Sent: Wednesday, July 31, 2013 4:32 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Doctors Visit Hi everyone, I have a question? I've been on Gleevec for over 13 years and over the years I have had watery eye's and burred vision. Mostly the right eye, a week or two will go by then I'll get up and the left eye will be burred but mostly the right eye. It's hard to get glasses because my eyes keep changing. Has anyone else had the same problem, if so please let me know. I'm going in next month to have my eye lids lowered they are dragging down to my feet, and the bottom of my eyes are almost as bad. When I wake in the morning I look like a balloon is around my eyes. My bottom of my eye is hanging down to my belly. It's not a pretty sight. Stay healthy, greenie In a message dated 7/31/2013 3:38:27 P.M. Eastern Daylight Time, ho...@ptd.net writes: Hi all, I did tell you I'd let you know how my Doctors visit went today. Well, we did straighten a lot out, about meds. etc. but nothing about the liver. She has talked to the other doctors and no one seems to know where they're going with this one. They think it's all being caused by the meds and I'm on so many that could have caused it. She said it probably started on Gleevec as they had me on twice the amount of what others were taking, and then it stopped working after being on it for years and he put me on the Tasigna. That's been great and got me into remission, but it also probably cost me...causing the liver problems. Well, I take so many drugs that could have caused it...or the combination of them all and we probably will never know. She did tell me that she had talked to the other doctors and Dr. Gandhi (my Oncologist) is talking with the people who make the drug and see if their doctors can come up with something. I'm still off of the Tasigna, so..when they make up their minds, I will let you know where we're going from here. She also addressed my pain and wants me to go back to pain management and see if injections might help the pain. They also won't go through the liver, so it's a good choice for that problem (if it works) I'm trying to stay positive and work with them on whatever I can. Just wanted you all to know where I'm at and will let you know when they make a decision about what to do with me Hope everyone is fine tonight. I'm heading to bed as I really need a good nights sleep. You're always in my thoughts and prayers, Hugs to all, Millie -- -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups
RE: [CMLHope] Photos
Dear Group, Another option is to use Google Hangout, then people would be able to see each other. It's somewhat like a conference call only you are on the call on your computer's webcam. I've never set one up but here is a link to more info if Marcie or someone else wants to learn more. There are some cancer support programs now done on Google Hangout as well as wonderful virtual photo tours that enable people to travel all over the world from their computers. It's amazing technology. Pat http://www.google.com/+/learnmore/hangouts/ From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Susan Zimmerman Sent: Wednesday, July 17, 2013 8:54 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Photos I vote for Millie's, also! AndI want a pic of Richard who has been off gleevec like me for so longbut now I want to take something, and am having stroke-like symptoms when I take tasigna, so at a loss about what to do Conference calls only need to find a hostwe can get them free if I ask a friend of mine...would recommend once a month, I guesscan google the different places that offer it Love, Susan -Original Message- From: margood18 margoo...@aol.com To: CMLHope CMLHope@googlegroups.com Sent: Sat, Jul 13, 2013 8:27 am Subject: [CMLHope] Photos Isn't it great that at least a group of us can put the face with the name? I'm going to find out how we can do a call in conference call. Rather, either my husband or the IT group from Baltimore County Government where I work, will tell me how to do it. We could set it up for once a week, every other week, or once a month. That would be cool, to have a number we call into and connect. I'd love to plan a get together but don't know if it is possible. If it is, I vote we go to Millie! Marcie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
RE: [CMLHope] Photos
I am someone who is focused on being healthy and busy Celebrating My Life. J From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Susan Zimmerman Sent: Wednesday, July 17, 2013 2:02 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Photos COMPLETELY MOTIVATED LOVELIES? CARCINOGENIC MOST LIVELY? (ugh) Susan -Original Message- From: ANGELYN ESDERS esd...@rogers.com To: cmlhope cmlhope@googlegroups.com Sent: Fri, Jul 12, 2013 11:35 pm Subject: Re: [CMLHope] Photos I conclude that the Warriors are an amazingly attractive group of people! CML? Currently More Lovely?? What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: myvet...@aol.com myvet...@aol.com To: cmlhope@googlegroups.com Sent: Friday, July 12, 2013 3:45:22 PM Subject: Re: [CMLHope] Photos Hi Marcie, Here are some pictures of my Wife Grace, my Daughter Susan and my son Derek. From young to older. I hope I did this right. Greenie In a message dated 7/11/2013 8:10:30 P.M. Eastern Daylight Time, margoo...@aol.com writes: Dear Warriors: We've been online together for a long time. For me it's been 4 1/4 years, many of you much longer. What does everyone think of posting a photo so we can see one another? I'm Facebook friends with a couple of you but I'd love to visually meet all of you. Any thoughts? Marcie Sent from my iPad -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
RE: [CMLHope]
Hi all - The International Scale (IS) is preferred, but there are still many places that are not using it. The move to the International scale is due to the need for uniformity, the availability of more sensitive testing and the belief that one day patients may not have to take these drugs for life, but will instead be able to be stop treatment on the basis of how deep the patient's response is to treatment. In the past, the ultimate patient goal was a complete molecular response, which was known as PCRU. The use of PCRU is going away, in favor of a new, much more specific MR (Molecular Response) scale. (In labs that are not using the IS, the equipment is only able to detect up to a 3.5 log reduction.) 0.1% BCR-ABL = MR 3 (3 log reduction from 100% - IRIS) 0.01% BCR-ABL = MR 4 0.0032% BCR-ABL = MR 4.5 0.001% BCR-ABL = MR 5 Getting to this level is the ideal, but not all patients get there. Higher levels, known as MMR or Major Molecular Response, indicate low levels of BCR-ABL and many patients remain in that status for years. Hope this helps, and please share with others who can benefit. Pat FAQ on International Scale (IS) PCR by Dr. Michael Mauro The International Scale (IS) PCR specific Frequently Asked Questions (FAQs) was created by Dr. Michael Mauro, a professor and leading expert in the field of chronic myeloid leukemia (CML). In this FAQ, Dr. Mauro explains the importance of International Scale (IS) for PCR, a scale for standardizing PCR testing across laboratories. http://www.whatismypcr.org/FAQ.aspx#tab17 1. What is the IS? http://www.whatismypcr.org/FAQ.aspx#tab18 2. Why is it important to standardize PCR labs? http://www.whatismypcr.org/FAQ.aspx#tab19 3. What happens if my PCR is not standardized? http://www.whatismypcr.org/FAQ.aspx#tab20 4. What should I ask of my doctor with regards to IS PCR? What is the IS? The 'IS' stands for 'International Scale'. International Scale is a means for standardizing and validating a patient's PCR test results. It refers to a reference range developed for reporting of quantitative PCR results for Bcr-Abl for patients with Ph+ (Bcr-Abl+) leukemias. The International Scale (IS) was developed as a result of the landmark IRIS trial. In this trial, untreated blood samples of 30 patients were shared between three precise and experienced PCR laboratories (Seattle, London, Adelaide), using the same control gene (BCR) to establish a typical starting point (untreated level) as well as a point which represented a 1000-fold reduction (3-log reduction) from the starting point. The mean untreated level was defined as 100% and a 'major molecular response', or MMR, was defined at 0.1% in these labs. MMR, a further improvement over complete cytogenetic response (CCyR), is an important landmark for patients. From this starting point, other labs using different systems could normalize their results so the scale used around the world would be the same: at diagnosis a CML patient's PCR value would be in the range of 100% (+/-) and a major molecular response would come in at 0.1%. http://www.whatismypcr.org/FAQ.aspx#top Back to the top Why is it important to standardize PCR labs? It is important to standardize PCR labs so that physicians in different medical centers or offices can all 'speak the same language' and 'use the same tool to measure'. Results can be compared between labs and centers and response milestones understood and confirmed. Without standardization of PCR for Bcr-Abl it is hard to know how to interpret changes in Bcr-Abl levels- for example, does the change represent loss of a treatment milestone? Is the change the result of variations in the instrument used to run the PCR test? PCR monitoring of Bcr-Abl is a crucial part of monitoring response to treatment for Chronic Myeloid Leukemia (CML). Guidelines describing the best way to navigate treatment options, especially early in treatment, are based on PCR results reported on the International Scale. For example, the first milestone in updated guidelines for management of CML treatment suggest PCR testing at three months of treatment looking for a reduction in Bcr-Abl to less than 10% in the 'IS'. Without IS standardization, deciding if milestones are met or not, or lost, are challenging if not impossible! http://www.whatismypcr.org/FAQ.aspx#top Back to the top What happens if my PCR is not standardized? Indeed many quality medical centers and CML experts do not have access yet to 'IS PCR'. In the absence of results reported using this scale, treating physicians can inquire for key details about the way the test was run and the parameters of the assay to accurately quantify response and potentially estimate depth of response as is done with IS reporting. It is somewhat unreliable and challenging, however, to make such estimations and this can often lead to under- or over-estimation of response; thus caution is recommended for any extrapolation. At the very least
RE: [CMLHope] Re: posting my blood panel results today
Hi Susan- My suggestion is to get in touch with one of the two Facilitators for the Chicago CML Connection group that's a service of the National CML Society. Either Lisa Lewandowski or Jen Schwarz, both CML patients, would be happy to help you, just as they help others. You can find more information, and their email addresses here. http://www.nationalcmlsociety.org/what-we-do/cml-connection/illinois-cml-res ources Here is Dr. Larsen's contact information: http://www.uchospitals.edu/physicians/richard-larson.html In Indianapolis, I consider Dr. Luke Akard: http://ibmtindy.com/wordpress/luke-akard/ Given your FISH results I would definitely see a true CML specialist as soon as possible. Wishing the best for you, Pat Elliott Phoenix, Arizona CML Patient and Advocate. From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Susan Zimmerman Sent: Saturday, May 18, 2013 5:59 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Greenie, I am from Indiana also, and looking for a good doctor in the Chicago area that knows a lot about CML. Do you suggest someone at Northwestern or do you know anyone at University of Chicago? Dr. Druker's nurse told my friend of a name, Dr. Larsen who is at U. of Chicago if he has not retired or moved. My latest FISH test showed 17.74 number, which gives me some cause for alarm. Anyone have any opinion about that? I'm the one who hasn't had any medicine for six years and 2 months now. I live in the South Bend/Granger area, and do not have faith in any of these local doctors. Where do you live, Greenie? Thanks and 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Re: Update on CML Treatments
Hi Beth - This is an older thread from the LLS forum that you may find helpfull. http://community.lls.org/message/73265#73265 There are some additional discussions you can find using the search function, and if you join the forum you can also post your own questions. This is the link to get to the Living With CML Forum. http://community.lls.org/community/bloodcancer/livingwith/cml Hope that helps! Pat On Mar 14, 3:43 pm, bkbar...@aol.com wrote: Anybody else?!?! -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Update on CML Treatments
Hi all - Dr. Jorge Cortes, one of the world's foremost CML experts, discusses new treatment options for CML and his thoughts about future directions in a new article for a physician publication from MD Anderson Cancer Center which is focused on current research and patient care advances. Regards, Pat Elliott CML patient and advocate OncoLog, March 2013, Vol. 58, No. 3 New Drugs Increase Treatment Options for Patients with Imatinib- Resistant Chronic Myeloid Leukemia By Zach Bohannan In the past year, several new targeted drugs have been approved as second-line treatments for imatinib-resistant chronic myeloid leukemia (CML). These drugs include the second-generation tyrosine kinase inhibitor bosutinib and the third-generation tyrosine kinase inhibitor ponatinib, which may change the standard of care for CML. CML treatment CML is caused by the BCR-ABL fusion protein, a result of the Philadelphia chromosomal translocation. The prevalence of this protein makes CML ideal for treatment using targeted therapies. For many years now, imatinib, one of the first and most successful targeted antineoplastic agents, has been the first-line treatment for CML. “Most CML patients are diagnosed in what we call the chronic phase, which does not carry any recognizable drug-resistant mutations in BCR- ABL, so imatinib usually works very well at first,” said Jorge Cortes, M.D., a professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. The main goal of CML treatment is a complete cytogenetic response, meaning an absence of detectable Philadelphia translocations in the bone marrow. Many patients treated with imatinib have complete responses, but the subset of patients who do not are then moved to a second-line treatment. Thus, there is interest in developing second- line therapies for imatinib-resistant CML, and several drugs are currently under investigation or have recently been approved by the U.S. Food and Drug Administration for this purpose. Bosutinib Because ABL is a tyrosine kinase, most candidates for second-line CML treatment are tyrosine kinase inhibitors, which include dasatinib, bosutinib, and ponatinib. Bosutinib is among the most promising of these drugs. It is generally considered more potent than imatinib, and it can overcome several of the mutations that render CML resistant to imatinib. The side effects of bosutinib are less severe—and most are less common— than those of some other tyrosine kinase inhibitors because bosutinib has less effect on the development of normal blood cells. For example, nilotinib, dasatinib, and several other tyrosine kinase inhibitors also inhibit growth factor receptors such as c-KIT and platelet- derived growth factor receptor. These receptors are important for the normal development of certain myeloid cell types. Bosutinib, however, does not affect these receptors as strongly as many other tyrosine kinase inhibitors and thus causes lower rates of neutropenia and thrombocytopenia than do nilotinib and dasatinib. Similarly, bosutinib causes lower rates of cardiotoxicity and pancreatitis than other second-generation tyrosine kinase inhibitors that are approved for treating imatinib-resistant CML. Conversely, some side effects might be more common with bosutinib. This lack of significant side effects is one reason bosutinib is so attractive. However, Dr. Cortes said, “Although all tyrosine kinase inhibitors are very safe compared with most other chemotherapies, there can still be adverse events, and doctors should explain and discuss possible side effects with patients.” The primary side effect associated with bosutinib is diarrhea, which can occur in up to 80% of patients. However, this is usually minor and manageable. Although bosutinib is superior to many other possible treatments for CML, it is not effective for all patients. For example, the T315I point mutation that can occur in the BCR-ABL gene renders CML resistant to imatinib, bosutinib, and most other tyrosine kinase inhibitors. Ponatinib Ponatinib is a very potent tyrosine kinase inhibitor that was specifically designed to treat the T315I point mutation while maintaining efficacy against all other known BCR-ABL permutations. Although ponatinib has many of the same side effects as other tyrosine kinase inhibitors, its ability to treat a previously intractable mutation makes it very promising. Because it is very effective against T315I-mutated BCR-ABL and in patients who have not responded to multiple other tyrosine kinase inhibitors, ponatinib was recently approved as a second-line treatment for CML patients. New first-line therapy? Stem cell transplant: offers curative potential but with greater risks compared to therapy with tyrosine kinase inhibitors; seldom used as initial therapy but considered for patients who have not responded well to other therapies. Because bosutinib shows so many benefits over other tyrosine kinase inhibitors, Dr. Cortes conducted some
[CMLHope] Re: Gleevec patent coming to an end in U.S. soon
Despite what you may read elsewhere on the Internet, the Gleevec patent is not coming to an end soon in the US. While the original expiration date was May 28, 2013, Novartis was granted an extension to Jan 4, 2015. And as noted earlier, there are other issues as well. http://www.uspto.gov/patents/resources/terms/156.jsp On Mar 11, 11:30 am, Vivi vkrei...@gmail.com wrote: Unfortunately, the U.S. Food and Drug Administration is making it extremely difficult for bio-similar generic drugs to be produced and marketed in the U.S. I'm not familiar with the regulations in Canada but it's possible we won't see a generic of Gleevec all that soon in the U.S. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Re: Newly diagnosed with CML
Dear Newly Diagnosed: The side effects you’re describing are pretty common. They are caused both by CML and treatment. What is important to know is that the longer you are in treatment the more the side effects will diminish, and there are many things that you can do right now to mitigate the side effects and make life easier. This presentation from Carolyn Blasdel, CML nurse practitioner who works directly with Dr. Brian Druker, one of the developers of Gleevec, will help you with managing side effects including muscle cramps. Basically mineral depletion causes muscle cramps, and calcium and potassium supplements can help. http://www.vimeo.com/16220208 This PDF file from a presentation she did for LLS has helpful advice too. http://www.cancereducation.com/cancersyspagesnb/transcripts/lls/35/aawe.pdf Your oncologist was trying to reassure you in mentioning that you may have to try a different drug. There are now more options for CML patients than ever before - six of them - and treatment has become more personalized and tailored to the individual. If you are in the US I suggest you visit the National CML Society website for more information at http://www.nationalcmlsociety.org/ If you are in another country then let me know and I will see if there is a CML advocacy group in your country and provide information. Wishing you the best, Pat Elliott CML patient and advocate On Mar 6, 10:12 pm, mylis...@yahoo.ca wrote: I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
[CMLHope] Re: Thankyou
Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is http://cmlsociety.org/ and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, mylis...@yahoo.ca wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I wouldn't want to change from Gleevec is that the patent expires in April 2013 in Canada.which will hopefully make it more affordable. This is a big issue for me, as I was recently terminated at work, while I've been off on sick leave - so no more benefits once the notice period is over. I'm sure that I will be denied benefits at any new job I get as this will then be a pre-existing condition. So affordable meds would definitely be good! I never knew medication could be so expensive! I keep telling myself I am not allowed to throw up, because it would be like throwing up $130...lol. Thanks again to all who replied. Pat and Michele - I will have a read through the links you sent me tonight; thanks for the info. 18's back to you Marty. Mylissa -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
RE: [CMLHope] how do you subscribe
Hi Rien, here are instructions for subscribing to the group. 1. From the home screen for Google Groups, http://groups.google.com/, type the Group name, CMLHope, in the search field. 2. Press the Search button. 3. Click on the group name. 4. Click on the 'Join group' link. The Join group dialog box appears. 5. Fill in the options on the Join Group dialog box. 6. Click the Join this group button. You are now a member of the group. Let me know if this doesn't work, but it should. Thanks for your ongoing support of CML patients and caregivers! Warm regards from Phoenix, Arizona, Pat Elliott From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of rien jonkers Sent: Sunday, December 23, 2012 9:24 AM To: cmlhope@googlegroups.com Subject: [CMLHope] how do you subscribe Hello everybody, Here I am again! We would like to inform the Dutch fellow-CML-patients how one can subscribe to this group. I tried the link CMLHope.com but if you fill ikn subscribe, a very long technical text appears. Could you give me some help? Thanks, in the name of our magazine for Dutch speaking CML patients! Ciao, Rien -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] how do you subscribe
Hi again Rein: You may be reaching the group page and need to take another step. Look over to the right side for Edit my membership and click on it. There should be a drop down menu that gives you choices on how you participate such as no email, email, digests, etc. It asks what email you want to use, and then at the bottom says, Save these settings. You are not bothering me, there is always time to help fellow CMLers! J Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of rien jonkers Sent: Sunday, December 23, 2012 11:59 AM To: cmlhope@googlegroups.com Cc: theo thissen Subject: Re: [CMLHope] how do you subscribe Hi Pat, Thank you for your quick reaction. However, if I follow your instructions, I get after your point 2 a whole series of links to messages from the group and is still remains impossible to subscribe... Is this because I am trying to get access from Europe??? Sorry to bother you, but this is rather important, because we would like to inform our fellow patients in the next issue of the Dutch Leucemia Magazine... Ciao from the Netherlands, I suppose the weather in Arizona will be much better than here Rien _ From: Pat Elliott pfemail...@gmail.com To: cmlhope@googlegroups.com Sent: Sunday, December 23, 2012 6:08 PM Subject: RE: [CMLHope] how do you subscribe Hi Rien, here are instructions for subscribing to the group. 1. From the home screen for Google Groups, http://groups.google.com/, type the Group name, CMLHope, in the search field. 2. Press the Search button. 3. Click on the group name. 4. Click on the 'Join group' link. The Join group dialog box appears. 5. Fill in the options on the Join Group dialog box. 6. Click the Join this group button. You are now a member of the group. Let me know if this doesn't work, but it should. Thanks for your ongoing support of CML patients and caregivers! Warm regards from Phoenix, Arizona, Pat Elliott -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] New CML Drug Gets Early Approval
Hi all - The FDA today approved the use of ponatinib for resistant CML three months earlier than expected. You can find details here: http://www.medpagetoday.com/HematologyOncology/Leukemia/36462?utm_source=bre aking-news http://www.medpagetoday.com/HematologyOncology/Leukemia/36462?utm_source=br eaking-newsutm_medium=emailutm_campaign=breaking-news utm_medium=emailutm_campaign=breaking-news Dr. Jorge Cortes from MD Anderson, clinical trial lead investigator, puts the drug in perspective for us in this video from ASH last weekend: Study Brings Positive Results For the Most Resistant Types of CML http://www.patientpower.info/video/study-brings-positive-results-for-the-mos t-resistant-types-of-cml?autoplay=1 Nice to have more support in our tool chest should we need it! Best regards, Pat Elliott CML patient and advocate -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: price of gleevec,insurance,obamacare
Hi Draz - Employers in the US typically offer group health insurance plans. Unlike individually purchased plans the group plans do not discriminate on the basis of pre-existing conditions such as cancer and the coverage must be offered to every employee. The type of coverage varies in terms of the employee's cost, the employer contribution to the cost and the level of benefits including pharmacy benefits. If you are considering a position with a US employer then as part of the negotiations you can ask for detailed information on their benefit package, including their health insurance plan and check the coverage out for yourself. Often there are several different choices and more and more there is a trend toward plans with what are called high deductibles - an amount of money the insured person pays before the insurance coverage kicks in. Once you have the information on how they are insured, and what options you may have, then you can check into it further. You should be able to make inquiries as to what they cover and what they charge, and often you can get these details in writing or through a website. You don't have to mention your personal situation. Asking for details of the benefit package is a normal and valid negotiating point for those considering a job here. If you are saying the position is with Google then you may have good coverage - the better, bigger, larger companies that have to compete for good talent tend to offer better health benefits to their employees in order to attract people. If you are working with a recruiter they should be able to help you with this and be used to these types of questions but do not share your personal medical history when you ask for information. Since the health system here is tied to employment it is very common for employers to discriminate against people with costly illnesses and it's best to keep that information to yourself as you go thru this process and even after you start the job. Good luck to you, I hope you get the answers you need and can go forward with your life! Best, Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Draz Sent: Sunday, November 11, 2012 5:20 AM To: cmlhope@googlegroups.com Cc: patrickemailguard-g...@yahoo.com Subject: Re: [CMLHope] Re: price of gleevec,insurance,obamacare Well time to find out how California and Google do it otherwise its pointless to go to the States if my paycheck all goes into medical coverage. Thank you for the answer. Drazen On Thursday, November 8, 2012 7:35:13 PM UTC+1, patrick wrote: Draz, the big picture is that there really is no US healthcare system. We are making some progress. I resisted replying to some other questions about healthcare costs before the election to avoid appearing like I was campaigning. The closest to an answer I can give you is that my friend Michael had not had any healthcare coverage since 2000 because he has both a lifelong health issue (pre-existing condition) and the desire and ability to work. BUT because of one of the provisions of the Affordable Healthcare Act commonly referred to as Obamacare, in October he applied for healthcare coverage with two traditional healthcare insurers and got the two letters denying coverage that he expected. With those two denials he was able to buy pool coverage under the new law and has health insurance for the first time in 11 years! (I think $320 month premium and maximum of $5000/year out-of-pocket expenses). What Tasigna and doctor and hospital visits would actually cost you is too complex to guess. You would actually have to investigate coverage for you, your employment situation and specific location. No, I cannot explain why there's one answer in most countries in the western world and not the US. Well, follow the (insurance) money my mom always said. BTW the full cost of Tasigna in the US is $9475 for 28 days of (4) 150mg/day. Patrick --- On Thu, 11/8/12, Draz dra...@gmail.com javascript: wrote: I'm trying to understand a bit more about Tasigna costs and the US healthcare system. I live in the Netherlands and am looking into moving to the States due to a better job position at the moment all medicine is free for me due to the healthcare system here. How much do you guys pay out of your own pocket each month for the medication (150mg per pill at 4 pills per day)? Do you pay the full 5k per month or do you get a large chunk back? I'm basing my job choice on this because if I can make more money but go broke due to costs then I'd rather stay in Holland. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope
RE: [CMLHope]
Hi Marty- Thank you, that's quite interesting but I'm not sure I believe this. It states the patent will expire in 2021 (not true) and even if it did expire then, why would they need an email address now? Novartis did an investor's presentation this week in Boston in which they outlined their plans for both Gleevec and Tasigna. According to their presentation Gleevec will come off patent in the US in 2015 and in Europe in 2016. The US government patent website also says 2015. Yes, I am one of the many people who is watching this date very closely and looking forward to the price drop! Here is the link to the presentation. See page 16. http://www.novartis.com/downloads/investors/event-calendar/2012/8-strategy- for-growth.pdf http://www.novartis.com/downloads/investors/event-calendar/2012/8-strategy-f or-growth.pdf The report is also interesting in outlining their strategies for moving patients off Gleevec and on Tasigna to retain market share and profitability. There have been some news articles about this recently as well. Best, Pat Elliott CML patient and patient advocate From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Marty Gartenberg Sent: Friday, November 09, 2012 9:36 PM To: CMLHope@googlegroups.com Subject: [CMLHope] Everyone that is currently using Gleevec... I have enclosed a web site that describes when the earliest Gleevec would come out of patent. There is also a field that you can put your email adderss in to in order to possibly get some kind of a discount. I am not sure about this so do it at your own discretion. http://leukemia.emedtv.com/gleevec/generic-gleevec.html 18's Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Sprycel induced PAH
Hi Jeanie- There's no reason why you can't become informed about pleural effusion on your own. Knowledge can help relieve anxiety and also serve as an early warning system. You can find information here: http://www.medicinenet.com/pleural_effusion/article.htm and here: http://www.webmd.com/lung/pleural-effusion-symptoms-causes-treatments Take good care, Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of icandoall...@aol.com Sent: Wednesday, October 03, 2012 12:59 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Sprycel induced PAH Hi Kelly and good to hear from you and glad you are doing so well. I failed on both Gleevec, after 5 years and Tasigna after 3 months and was put on Sprycel. I became PCRU after only 3 months. I just had my 3 month check up and I tried to talk to my Onc about the PE. He said none of his patients developed it and PE was the last thing I needed to worry about. Needless to say, ever since I heard your problem, I am indeed worried about PE. I ask him what the symptoms were and he just said you will know it if you have it. This Onc is one of the top specialist at Moffitt Cancer Center. Go figure. I will still worry about it and hope it never comes. I have been on Sprycel since 2009. Blessings, Jeanie3 -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] price
Gleevec. 400 mg x 30. United States. From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Emile Fichault Sent: Thursday, September 27, 2012 7:53 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] price Pat , Are you talking about the price of Gleevec or Sprycel . Here in Canada (Quebec) , 10 years ago the price was about 3200$ and now it's around 3500$ for 30 X 400 mg . Emile ** From: Pat Elliott Sent: Wednesday, September 26, 2012 11:39 AM Rob - Mine was $3,200 at diagnosis three years ago and is now $5,964.45 a month. Pat ** From: robert goodrich Sent: Wednesday, September 26, 2012 8:08 AM has anyone seen the price of gleevec increase lately,ours is over $3,200. a month now. thanks...rob -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] price
Rob - Mine was $3,200 at diagnosis three years ago and is now $5,964.45 a month. Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of robert goodrich Sent: Wednesday, September 26, 2012 8:08 AM To: cmlhope@googlegroups.com Subject: [CMLHope] price has anyone seen the price of gleevec increase lately,ours is over $3,200. a month now. thanks...rob -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope]
Hi everyone - I work with multiple health media companies. It is perfectly acceptable to share information from an online site such as About.com, and in fact is very much welcomed as that's how they get backlinks and boost rankings for their site in search engines. To do so, the source should be mentioned and the link should be provided. It is not acceptable to take information from an online media company and pass it on as if it is one's own work and that's where people can inadvertently get into trouble. If you're interested in keeping up with the latest developments in CML, and are on Facebook, I suggest you like the page for The National CML Society. This week, for example, the FDA approval of Bosulif (bosutinib) was shared within minutes of the official announcement. The link for the page is: http://www.facebook.com/thenationalcmlsociety Whether you're on Facebook or not, you can find valuable information on CML developments from the NCMLS website at http://www.nationalcmlsociety.org/ Alert boxes on the home page cover major news in our community. If you click on the alert box for Blood Cancer Awareness Month, which is right now, you will find information on several events and new campaigns such as the global What is my PCR? campaign. I know there are some very active people in this group, and many of you help to mentor and advocate for others. Please take advantage of the many new tools and resources that are becoming available to us! Warm Regards, Pat Elliott Phoenix, Arizona CML patient and advocate Speaking 9/22/12 at the live, online Living Well with CML Virtual Patient Summit. Details here: www.cmlpatientsummit.com From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of LearnToBallroomDanceOnline.com Sent: Thursday, September 06, 2012 9:51 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: [cml 2] Fw: Neutropenia - How To Avoid Infections Thank you so much Patrick! My leukemia blog has many readers and I thought that it was great information. I try to address what is most concerning those of us with CML, so again...thanks for the tip. Evidently you are much more resourceful than I am!! Best to you, Michele On Thu, Sep 6, 2012 at 10:30 AM, patrickemailguard-g...@yahoo.com wrote: Michelle, I can assure you that everyone I have ever encountered here responds anytime they can help! I see your posts which I remember because of your LearnToBallroomDanceOnline nickname. I wasn't able to search on the Google group site for your posts but I did find your recent post about asking permission to repost Lottie's article on your blog. I for one didn't respond because I didn't have an answer. But here's an attempt; I went back and read Lottie's post. What she posted was an article from about.com and she included a link to the article http://inhealth.about.com/when-cancer-care-leads-to-neutropenia/neutropenia- a-vulnerable-time-for-infections?did=t5_rss39 Which is actually an article from http://www.bettermedicine.com/ http://www.bettermedicine.com/ so to be totally legit I would suggest you write them for permission. Patrick Galveston - the nation's fastest growing cruise port. --- On Thu, 9/6/12, LearnToBallroomDanceOnline.com ballroom...@gmail.com wrote: From: LearnToBallroomDanceOnline.com ballroom...@gmail.com Subject: Re: [CMLHope] Re: [cml 2] Fw: Neutropenia - How To Avoid Infections To: cmlhope@googlegroups.com Date: Thursday, September 6, 2012, 10:59 AM Just curious; Does ANYONE see my messages? regardless of the content I never see a reply. I know that a lot of you seem to know each other as I read YOUR content, but either no ones sees my posts or I am just not one of the crowd. Thanks, Michele -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- mich...@learntoballroomdanceonline.com www.LearntoBallroomDanceOnline.com -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email
RE: [CMLHope] Re: Depressive side effects
Hi Beth - Here's links to upcoming CML Connection meetings, including the one in Chicago. I hope you can go!! Indianapolis http://conta.cc/Indy0421 Portland http://conta.cc/wash422 Chicago http://conta.cc/chicago0428 Michigan http://conta.cc/michigan512 Also, my friend Scott Seaman who founded the Chicago Blood Cancer Foundation is a great resource for support in your community. While Scott has another blood cancer, his organization supports all of us. http://www.chicagobloodcancer.org/ Take good care, Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of bkbar...@aol.com Sent: Wednesday, April 18, 2012 2:00 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: Depressive side effects Thank you so much Pat.. I will check all out these web sites..I am taking 100,000 a week of vitamin D to get my numbers up, 50,000 for three months didn't budge my number which is 20. I think it is helping overall as well.. I would recommend anyone getting the Vit D (25) test...to see if their levels are normal. Wish I could go to that conference on April 28th. Hope you have a wonderful time connecting with others...Please let me know when Chicago's connection is? You are a doll Pat, so helpful with resourcesI aspire to learn more wth time, and perhaps help other's with this illness in my future. Need to feel a bit better first. Warmest regards, Beth -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: Depressive side effects
ABSOLUTELY! I will write you offline. We could Skype too if you want! From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of bkbar...@aol.com Sent: Wednesday, April 18, 2012 2:11 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: Depressive side effects Thanks Pat. Any chance of a talk via phone one day? Beth -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: Depressive side effects
Hi Beth and group- I wanted to respond to this: wondering if you Pat, or anyone else knows of anyone with cml who has tried alternative treatments completely, through use of herbs and supplements... those things which support health but are contra indicated with the use of the kinase inhibitors? Just wondering if anyone out there has thought about or tried this? - I have not done this personally, but I can share that my PCP checked my Vitamin D levels, partly in response to my concerns about fatigue, and found they were deficient. I am taking 5,000 mg a day and this has really been helpful in boosting my energy and just general feeling of well-being. And I live in Arizona where it is sunny almost every day! I've since read several articles about Vitamin D, and deficiencies are fairly common as we get older, and are also linked to depression. A friend with lymphoma advised me that she faced the same thing, and takes 10,000 mg a day. Both she, and my doctor, say the government recommended amounts are too low. It takes a separate blood test to measure for a Vitamin D deficiency, it's not something that is automatically in our regular blood tests. It may be worth looking into and discussing with your doctors. In terms of complementary and alternative treatments, the CML Advocates Network had a call for people to take part in a study of this last year. Here is the link: http://www.cmladvocates.net/index.php?option=com_content http://www.cmladvocates.net/index.php?option=com_contentview=articleid=15 1:camsurveycatid=3 view=articleid=151:camsurveycatid=3 Those doing the survey are in Europe, and I haven't seen a report on results yet, but will see what I can find out. As far as trying things on our own, there is some good information on the NCMLS website about herbs and supplements that are known to cause issues, so I would definitely review that if you are considering something like that. http://www.nationalcmlsociety.org/living-cml/drug-food-interactions What I see over and over regarding depression and well-being is the suggestion that cancer patients should exercise, well, that's a bit hard when you're dealing with so much fatigue, as we all know. There is a clinical trial underway at MD Anderson with the drug Nuvigil to see if that will help with the fatigue. If so that, may be helpful for many of us. Here is the link to the trial data: http://clinicaltrials.gov/ct2/show/NCT01169753 And, since I am here writing already, I wanted to mention that I will be going to Santa Clara, California on April 28 for the Living Well with CML seminar for the National CML Society and if any of you are also going to be there I would love to meet you in person. Several people are coming in from another group I'm in, and, gosh, it's going to be so great to actually meet these great folks who were there to lend their ears and knowledge when I was first diagnosed and helped make this easier. It's one of many great things going on, check the NCMLS website for more if you are in the US. ( Beth - I think you're in Chicago? There's a CML Connection meeting coming up there.) Hope this helps!! Pat Elliott Phoenix, Arizona -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Depressive side effects
Kelly - I've been working with a patient in Texas who has had similar experiences. I'm glad you wrote about this. He is having trouble getting help too. Pat -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of kellyelise Sent: Wednesday, April 11, 2012 3:50 PM To: CMLHope Subject: [CMLHope] Depressive side effects Does anyone else suffer from severe cycles of depression related to the TKI's? I have taken all 3 (Gleevec, Sprycel and Tasigna). During vacations from these drugs and prior to diagnosis, I had never experienced such severe depressive episodes. I'm talking about a tornado touchdown with complete devastation to the point of suicidal ideation. Can't stop crying, hide from the world and just die. Bleh! They plop me on various antidepressants every time I start a new TKI, which are totally ineffective and increases various side effects. I am one of the oddballs that gets rare side effects and I react badly to just about everything they give me. So, I'm probably the oddball who reacts psychologically to these drugs, too. I can't explain it, control it or avoid it. Just curious - anyone else? Kelly -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Special East Coast Event for CML Patients 4/26
Writing to share a special event coming up that will be of interest to those on the East Coast. *CML: A Decade of Progress - A Future of Promise* Thursday, April 26, 2012 - 6 - 9 p.m. EST Beechwood Hotel; Worcester, Mass. A program from The National CML Society series: An Evening with the CML Experts™ Free event * Includes dinner * Registration required *More info and registration here: *http://goo.gl/ZjFTK** *Space is limited - Register Today!* As you know, countless medical journals and news outlets have documented the remarkable breakthroughs in treating patients with chronic myelogenous leukemia (CML) with tyrosine kinase inhibitorshttp://scholar.google.com/scholar?q=tyrosine+kinase+inhibitorshl=enas_sdt=0as_vis=1oi=scholartsa=Xei=sW-ET8nLKaKU2wXXt_3zCAved=0CEQQgQMwAA(TKIs).But those who are now living with CML and taking TKIs have countless questions about how the drugs work, the long term impact, the reasons for the development of additional drugs and the potential for cure. This event addresses many of those questions. Attendees will hear directly from leading specialists and researchers from the University of Massachusetts who have an in-depth understanding of new therapeutic advances which will soon be available. These advances include those that further address mutations, as well as research focused on the eradication of Leukemic Stem Cells which many believe is the key to an eventual cure. The National CML Society’s Evening With the CML Experts ™ programs enable participants to interact with some of America's leading experts in CML research and treatment. Programs provide the latest news and information on emerging therapies, side-effect management, research and more. Attendees also meet others from the CML community and can learn about services provided by NCMLS. An unrestricted grant from Novartis Pharmaceuticals has helped make this program possible. Portions of the program will be available to the public via videotape at a later date. Watch for announcements. *For more information on The National CML Society please visit our Facebook page or **http://www.nationalcmlsociety.org/*http://www.nationalcmlsociety.org/ Or just send me an email and I am happy to help. Best regards, Pat Elliott Phoenix, Arizona CML patient and patient advocate -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: Tasigna Users
Kelly - Have you ever looked into NeedyMeds.com? http://www.needymeds.org/ It's a nonprofit started by a doctor and they have aggregated information on patient assistance programs that help with drug costs. Might be able to help you with some of your costs related to the PAH. You could also contact the Patient Advocate Foundation http://www.patientadvocate.org/ and The National CML Society also assists CML patients with medical cost issues http://www.nationalcmlsociety.org/contact-us Sorry you are dealing with all this, hope you find some solutions, and soon! Pat -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of kellyelise Sent: Tuesday, April 10, 2012 10:05 AM To: CMLHope Subject: [CMLHope] Re: Tasigna Users Thank you for your response, Susan. Quite frankly, it feels as though these drugs are sucking the life right out of me. I hate them with a passion. Good for you for managing so long without them. I am sorry you suffered such awful side effects to the Gleevec. The insurance issue is a huge problem for me, too. My PAH supplies are well over $7,000 per month. My co-pay is $1,500 per month - which I don't have. I suspect it will only be a matter of time before they cut me off. My co-pay for the Tasigna is $3.30 per month - go figure. I have odd dreams where I go off and live somewhere else with my closest friends and childrenparadise? lol Marty - you are so funny! Sometimes I think stepping in front of a speeding bus would be a viable option...and then reality sets in and I know it is not. Thanks for making me laugh! 18s, Kelly To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group athttp://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: need Cleevec for my son
Hi all - Gleevec was approved by the FDA in the US for adults with dermatofibrosarcoma in 2006. As best I can tell the request coming in to this group, and to other patient groups, is from someone in a country where it is more difficult to get Gleevec and who may be using a translation tool to communicate in English. Here is some information from Walgreens: It is thought that Gleevec can help treat dermatofibrosarcoma protuberans (DFSP) by blocking the signals from an abnormal protein made by a gene called the PDGFR fusion gene. DFSP are tumors that grow under the top skin layer, and it seems that the PDGFR fusion gene makes the abnormal protein that causes cancerous cells to grow. Gleevec may work by blocking the messages from that abnormal protein that could harm the normal function of cells. It is an individual choice, of course, on whether to help someone out by sending drugs to them, but one should be aware of the risks taken when doing so and be fully informed. Regards, Pat -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Suzieq Sent: Saturday, March 17, 2012 7:53 AM To: CMLHope Subject: [CMLHope] Re: need Cleevec for my son Michelle: I'm with you on this..it was the first thing I thought of when I saw the post. 2nd, was the dermatofibrosarcoma ?? My antenna's came up, sorry. And, as you pointed out, the spelling or poor grammar. I liked Pat's response. Suzieq -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: need Cleevec for my son
Thanks all. It's my background - including many years in technology. Everything said online in a group can become public and there are more and more ways that every comment made online is being stored and made available to law enforcement, the IRS, employers, prospective employers and, of course, advertisers. We mainly hear about the advertising end but it's much deeper. As long as health insurance in the US is tied to employment for people under the age of 65 there are many reasons to be cautious while online. Many of my younger CML friends have to remain hidden with their illness out of fear of losing their employment or being able to get another job if they lose their employment. Someday I hope to be able to provide a guidebook for patients about all of this and, hopefully, also be able to provide some safer avenues for discussions. From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of myvet...@aol.com Sent: Saturday, March 17, 2012 11:11 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: need Cleevec for my son Me Three. greenie In a message dated 3/17/2012 1:07:14 P.M. Eastern Daylight Time, ballroom...@gmail.com writes: Yes good response Pat! Someday I may learn to be more diplomatic and PC...lol! On Sat, Mar 17, 2012 at 7:52 AM, Suzieq sheila.a.wat...@gmail.com wrote: Michelle: I'm with you on this..it was the first thing I thought of when I saw the post. 2nd, was the dermatofibrosarcoma ?? My antenna's came up, sorry. And, as you pointed out, the spelling or poor grammar. I liked Pat's response. Suzieq -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- mich...@learntoballroomdanceonline.com www.LearntoBallroomDanceOnline.com http://www.learntoballroomdanceonline.com/ -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] need Cleevec for my son
Marwan- In the US, those sending prescription drugs to others can be punished criminally and face fines or possible jail time. Please contact the drug manufacturer, Novartis, regarding their assistance programs. Good luck to you and your son. Pat -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Marwan Abdeh Sent: Thursday, March 01, 2012 4:38 PM To: cmlhope@googlegroups.com Subject: [CMLHope] need Cleevec for my son Dear Sirs My son has dermatofibrosarcoma and badly needs GLEEVEC Medecine as I cannot afford Pls put me in touch with donnators who can send the medecine. Pls safe my son.Kind regards Marwan Abdeh -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Re: loss of effectiveness of gleevec and sprycel
There are several reasons for a loss of response, your physician will need to order testing to determine if there is a gene mutation. In the meantime, education on current CML options can help ease your mind. This is also a topic we all need to think about and a key reason why the National CML Society and Patient Power have teamed up to bring current clinical information from the country's top experts directly to patients through video interviews. Please see what Dr. Michael Mauro from OHSU has to say, from ASH 2011, in this interview: Considering Your Treatment Options to Better Manage CML http://www.patientpower.info/video/considering-your-treatment-options-to-better-manage-cml There are additional interviews on Patient Power from ASH on the three FDA approved drugs and the two additonal drugs now in clinical trials and showing very positive results for those dealing with loss of response. In short, there are more options than ever before for us and many reasons to be optimistic! Hope this is helpful! Pat Elliott Phoenix, Arizona On Mar 12, 10:54 am, skink1100 d_c...@comcast.net wrote: I have had cml for nearly 10 years. For several years I was at the not detectable level in my pcr tests. Last year the gleevec seemed to no longer be as effective...and my doctor switched me to sprycel...about 4 months ago...my results continue to decline, although my blood looks ok. Has anyone had a similar experience...could it be a new mutation? Where does on go from here...getting worried. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: loss of effectiveness of gleevec and sprycel
Hi Greenie - Cave Creek is a wonderful town..home of the infamous Horny Toad restaurant..and some fantastic artists too. One of my favorite bead stores is there. I hope your friend is aware of the Phoenix CML Connection group - the next meeting is Saturday, March 24. Barb Stanley is the facilitator, a survivor of 10+ years. There's more info on the NCMLS website or I would also be happy to provide info too. http://www.nationalcmlsociety.org/what-we-do/cml-connection Let me know if YOU ever get out to Arizona, I would love to meet you and show you around! Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of myvet...@aol.com Sent: Monday, March 12, 2012 12:18 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: loss of effectiveness of gleevec and sprycel Pat, thank you for this information, it's going to be very helpful. A good friend of mine lives in Cave Creek, AZ. Greenie Ft. Myers, FL. In a message dated 3/12/2012 2:08:23 P.M. Eastern Daylight Time, pfemail...@gmail.com writes: There are several reasons for a loss of response, your physician will need to order testing to determine if there is a gene mutation. In the meantime, education on current CML options can help ease your mind. This is also a topic we all need to think about and a key reason why the National CML Society and Patient Power have teamed up to bring current clinical information from the country's top experts directly to patients through video interviews. Please see what Dr. Michael Mauro from OHSU has to say, from ASH 2011, in this interview: Considering Your Treatment Options to Better Manage CML http://www.patientpower.info/video/considering-your-treatment-options-to-bet ter-manage-cml There are additional interviews on Patient Power from ASH on the three FDA approved drugs and the two additonal drugs now in clinical trials and showing very positive results for those dealing with loss of response. In short, there are more options than ever before for us and many reasons to be optimistic! Hope this is helpful! Pat Elliott Phoenix, Arizona On Mar 12, 10:54 am, skink1100 d_c...@comcast.net wrote: I have had cml for nearly 10 years. For several years I was at the not detectable level in my pcr tests. Last year the gleevec seemed to no longer be as effective...and my doctor switched me to sprycel...about 4 months ago...my results continue to decline, although my blood looks ok. Has anyone had a similar experience...could it be a new mutation? Where does on go from here...getting worried. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Living Well With CML Summits
Hi All - There was a series of (free) meetings in several cities late in 2011 featuring key CML experts as speakers and the opportunity for patients in those communities to meet each other and learn together. The series is sponsored by Novartis, in conjunction with The National CML Society. There was a lot of positive feedback and they are being offered again in 2012. Below are the upcoming dates and cities. Orlando is coming up really soon!! You can click on the link to get speaker bios, times, locations, etc and to register. Please also help get the word out to others. Living Well With CML Summits 2012 are scheduled for: Orlando, Florida - March 24, 2012 Santa Clara, California - April 28, 2012 Broomfield, Colorado - May 5, 2012 Newton, Mass. - May 19,2012 Dallas, Texas - June 9, 2012 Portland, Oregon - July 14, 2012 https://www.seeuthere.com/rsvp/invitation/inforegistration.asp?id=m2c6ee-46VZ9V8PWZF54sutEventRoleID=m2c6ee-4BX56QMG4B4ISsutGuid=40980 I think we all know how isolating it can be have have this disease and how much it means to meet other people, in real life, and chat with them and share a few stories and hopefully a few laughs as well.Also, getting the latest information on the new TKIs, efforts toward a cure and other clinical developments is always helpful. If you have questions about these let me know and I will do my best to get you answers. Warm regards, Pat Elliott Phoenix, Arizona CML patient and advocate -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics
Not sure why people are not posting here, but they are definitely out there posting, and in multiple groups. The public visibility of posts may be a key factor for this group, especially in the US where healthcare is dependent on an employer in so many cases. People still have questions and need answers –one extreme example I saw was a person in a group for cats with feline leukemia, who got nonsense answers back, an indicator of how desperate people can be to find resources and what they may encounter. Our population is growing, which is a good thing from the standpoint of the growth coming from survival. The need for accurate information is growing too with the expansion of treatment options and the new clinical trials focused on side effect support and cures. It does seem like people are the most engaged in the first two years. The drug company literature is focused on the first two years as is the content of many of the educational programs they fund for patients. We all know that is inadequate. Many of us are working hard, around the world, to change this and developing new support services for the long run. In the US, patients are now able to meet others face to face through the CML Connection support groups which are growing in number and need experienced, educated leaders to serve as facilitators. In some countries people whose only choice in the past was to use translation services to participate in English language groups now have educational materials and groups online in their native language for support. There’s a lot going on, and many positive developments, with more to come. Pat Elliott Phoenix, Arizona From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Victoria Reiter Sent: Saturday, February 25, 2012 7:58 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics It IS strange that no one, or very few, CMLers are posting. Have we become fatigued with focusing on our chronic condition and its side-effects? How many of us have decided just to get on with our lives and to live as fully as we can, trusting that Gleevec or the other inhibitors will keep us going? I think we may have forgotten how dismayed (euphemism) each of us was when we were first diagnosed and how glad we were to find this website and the information and support we received from it. Perhaps there are other, newer CML websites meant to provide information without demanding any personal, emotional involvement on the part of the reader. No doubt pioneers eventually get tired. Maybe that's what's at work here. On Sat, Feb 25, 2012 at 5:50 AM, cmlhope@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics http://groups.google.com/group/cmlhope/topics § https://mail.google.com/mail/html/compose/static_files/blank_quirks.html#13 5b42244878824f_group_thread_0 FINALLY RELIEF FROM CRAMPS [1 Update] § https://mail.google.com/mail/html/compose/static_files/blank_quirks.html#13 5b42244878824f_group_thread_1 No posts [1 Update] http://groups.google.com/group/cmlhope/t/538b0e9d8515a9e8 FINALLY RELIEF FROM CRAMPS dstuede...@aol.com Feb 24 05:05PM -0500 My husband found an ointment that really eliminates the excruciating leg cramps (a side effect of Gleevec). It is called Pain Gon. It reacts fast when applied to the affected area. For more information call Heather Duncan (Quad City Physical Therapy) at 563-359-3799. http://groups.google.com/group/cmlhope/t/dbc4f55a359a3eaa No posts myvet...@aol.com Feb 24 08:33AM -0500 I'm receiving posts. Seems that no one is sending out emails. greenie In a message dated 2/24/2012 12:46:29 A.M. Eastern Standard Time, joy...@htc.net writes: Where did everybody go??? Have not received a post for many days now. Checked my email settings and quarantine box. Everything looks good. Can't believe no one is posting. Anybody else having problems, other than Richard and I? Joyce in IL -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope You received this message because you are subscribed to the Google Group cmlhope. You can mailto:cmlhope@googlegroups.com post via email. To unsubscribe from this group, mailto:cmlhope+unsubscr...@googlegroups.com send an empty message. For more options, http://groups.google.com/group/cmlhope/topics visit this group. -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed
[CMLHope] Re: Facebook Group
I'm a CML patient and healthcare journalist, and wanted to make you aware of the following resources I work with to bring news to the CML community. Facebook page - CML World - covers global news and events in the CML community. http://www.facebook.com/CMLWorld Facebook page - The National CML Society - Nonprofit organization for US patients, page covers NCMLS services and activities, including meetings of local community support groups (CML Connection) plus news/ information about the CML community including clinical developments, patient stories, legislative updates, clinical trials updates. http://www.facebook.com/thenationalcmlsociety Facebook page - CML Advocates Network - Open to all, news from and about the work of the international CML Advocates Network which represents patient groups from 51 countries and every continent. I represent the US to this group. http://www.facebook.com/pages/CML-Advocates-Network/ Patient Power CML Health Education Center - Health website founded by leukemia (CLL) survivor and medical journalist Andrew Schorr, a friend for 25+ years Video interviews with leading CML experts from major medical centers such as MD Anderson, OHSU and key clinical conferences such as ASH, ASCO as well as multiple video programs with CML patients and caregivers. http://www.patientpower.info/health-topic/chronic-myelogenous-leukemia Rob - I would be happy to contribute to the CML Hope Facebook page as well. I also welcome input and topic suggestions from members of this group. Our community is growing larger and larger every year, as is the need for information. There are multiple groups on Facebook now (Use the search box to find them). I'm sure the newly diagnosed would greatly benefit from the experience and support that others could provide as they seek answers to many, many questions. Warm regards to all, Pat Elliott Phoenix, Arizona CML patient and e-patient advocate On Feb 23, 8:25 am, Robert W Neill Jr r...@rwneill.com wrote: I wanted to mention that we have a Facebook group now for CMLHope.Com Not as many people seem to use email groups as they did in the past. It would be good to get more activity in the Facebook group. http://www.facebook.com/pages/CMLHopeCom/294037421385 Rob -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] LLS US CML Co-Pay Program Reopens Jan 3
Happy New Year everyone! Now for some good news! For US patients - The LLS Chronic Myelogenous Leukemia (CML) Co-Pay Assistance fund will re-open on Tuesday January 3, 2012. The maximum CML fund assistance award will be $500 (five hundred dollars). http://www.lls.org/diseaseinformation/getinformationsupport/financialmatters/cop\ ayassistance/ Hope this is helpful to some of you in the new year! Pat Elliott Phoenix, Arizona -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Looking for answers
Tammy - First, although it may be hard right now, try not to panic. There are several options for patients who lose their response to Gleevec. What is most important is to find the right answers for your personal situation. Per your email, your doctor is looking at alternative medication options as well as transplant, and covering all the bases in the interest of providing you with as much information as possible. You should also arm yourself with information. Here is a link about additional treatments for CML: http://www.nationalcmlsociety.org/living-cml/therapies It's not clear from what you have said whether additional tests have been done to determine what, if any, mutation you may be experiencing. You need to know the exact state of your disease to know what options are the right ones for you. If your doctor is not a CML specialist then you may need to have your doctor consult with an expert in CML or consider going to one directly. I suggest you get in touch with the National CML Society on Tuesday at 1-877-431-2573. They are a nonprofit organization dedicated to supporting CML patients and caregivers, and can assist you with more information and in locating a CML expert near you should you need one There are many medications now available in addition to Gleevec and hopefully one will work for you. If not, and a transplant is needed, as does still happen in some cases, there are many avenues of support to help you. I hope you have the answers you need soon. Pat Elliott Phoenix, Arizona -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Tammy Sent: Monday, December 26, 2011 8:33 PM To: cmlhope@googlegroups.com Subject: [CMLHope] Looking for answers My Gleevec stopped working and my wbc went to 18. My Dr is talking about changing my meds and wants me to talk to the transplant team. I am so scared. She says that it not a matter of it stopping working. She says that alot of times another chromozone (sp??) seperates and the new meds will stop working at some point too. I was in remission for about 8 and a half years. Any advise her??? Sent from my NOOKcolor -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Looking for answers
Beth - You're very welcome, and thanks for the kinds words. For those who don't know me, I'm a health journalist and a survivor of both breast cancer and CML. One of the health media companies I work with, Patient Power, just completed multiple interviews at the American Society of Hematology annual conference in San Diego, including one with Dr. Brian Druker. We took a break for the holidays, but will be adding more programs in the next few weeks. You can find our CML Education Center at: http://www.patientpower.info/health-topic/cml There are interviews with medical experts AND several patients who've shared their journeys with CML, and also a great caregiver named Arthur Murphy who talks about how he and wife share the journey together - figuratively and literally - on bicycle tours. Best regards, Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of bkbar...@aol.com Sent: Monday, December 26, 2011 9:25 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Looking for answers Pat...I just read your email..you are always so helpful to all of us and full of resourcesand hope...I reponded without reading yours first... Thank you from all of usBeth in Chicago... -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Re: Specialty Meds on Prescription Solutions
Hello Parson - I am a CML patient whose prescription was initially handled by a regular pharmacy, which was a nightmare. I changed insurance plans and that resulted in getting the prescription through a specialty pharmacy, which brought greatly improved service, the back up support of pharmacists and nurses if needed, and other advantages.I get reminder calls to refill the drug, and if I forget to do so, which I just did for the first time, they call me again. I am always able to schedule the deliveries on a specific day and specify whether or not I want to require a signature. The UPS delivery person always comes at about the same time of day on delivery day and is very professional and courteous. It's not clear to me why you would not be able to specify delivery dates or set them up in advance which would give you more control.You should also be able to require a signature which would prevent packages under bushes and such, problems which seem like a delivery company issue rather than a specialty pharmacy issue. I was sorry to read of the problems you've had, and hope you find some solutions that will work for you and your wife. Take care, Pat Elliott Phoenix, Arizona On Dec 14, 12:45 pm, Parson parson1...@gmail.com wrote: Hello, I've joined this group as my wife has CML. She has her insurance via my work coverage which happens to be through United. Recently we found out that United had deemed Sprycel a specialty medication and we'd be forced to fill her prescription via Prescription Solutions. (a sidenote, isn't it wonderful to know this is a specialty medication, more special than the rest? ultimately, aren't all medications specialty as they all are formulated to do something specialized? it's so insulting when insurers use such transparent tactics to squeeze the customer.) Anyway, I am very concerned about this turn of events. We have had packages delivered to neighbors, left in the bushes below our porch or had missed you stickers left on days when I have not left the house, period. When I voiced this concern, I was given the option to have the medication delivered to my wife's work (not a valid option given her employer) or for it to be delivered to a UPS Store (!??!?!) Has anyone else had any dealings with this company? I'm very concerned that if there are any complications or delays with shipping. Any suggestions for dealing with them? I was told you can submit an appeal for a permanent opt out via United, has anyone else tried this? I'm planning on doing so as a matter of course, but was curious to see if anyone had any luck to begin with. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Re: ordering Gleevec or imatinib from a Canadian Rx company
Carol - Imatinib/Gleevec is not available in generic form from Canada. I have seen ads for so-called Canadian pharmacies claiming to sell generic Gleevec but would not trust my personal health to them. The National CML Society offers assistance in dealing with insurance and co-pay issues and would be able to help you further. http://www.nationalcmlsociety.org/ Good luck to you and your husband, Pat Elliott Phoenix, Arizona On Oct 27, 6:36 pm, Catlubr tigerlv...@cox.net wrote: Hi all, I haven't posted for a very long time. I need assistance with information from anyone who is getting their Gleevec or imatinib from a Canadian pharmacy. If so, which one? My husband, Clyde, may be switching over to Medicare and we discovered how expensive it will be for Gleevec on Part D. Does anyone go through Canada to obtain the drug? If so, do the Drs. approve of ordering the generic form via the brand name drug? Any assistance will be greatly appreciated. Carol Furumoto Clyde Dx 9/99 -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] OnControl
SKI606 is Bosutinib. Findings were presented at the most recent ASCO conference. Regards, Pat Elliott Phoenix, Arizona http://www.ascopost.com/articles/september-2010/bosutinib-may-have-a-major-r ole-in-cml-.aspx Bosutinib May Have a Major Role in CML By Alice Goodman September 2010, Volume 1, Issue 4 On the heels of the positive studies of nilotinib (Tasigna) and dasatinib (Sprycel) as first-line therapy for chronic-phase chronic myeloid leukemia (CML), promising results for another tyrosine kinase inhibitor-bosutinib-were presented at the 2010 ASCO Annual Meeting. Two separate studies reported at the meeting showed that bosutinib was effective as second- and third-line therapy in patients for whom imatinib and other therapies have failed. The first study found that half of the patients who were either imatinib-resistant or imatinib-intolerant achieved a complete cytogenetic response (CCyR) with bosutinib.1 The second study suggested that bosutinib was also effective as third-line therapy in chronic-phase CML, after failure on first-line imatinib and second-line dasatinib.2 We see very good activity for bosutinib in both second- and third-line therapy, with high levels of response, said lead author of the first study and senior author of the second study, Jorge E. Cortes, MD, Chair of the CML Section, Department of Leukemia at M.D. Anderson Cancer Center in Houston. Noting that toxicity of bosutinib was acceptable in these studies, he commented, Bosutinib is a contender for a major role in the treatment of CML. Bosutinib is 30 times more potent than imatinib. This drug inhibits BCR-ABL signaling in CML cells and is active against all imatinib-resistant mutations, with the exception of the T315-I clone. Pfizer is sponsoring a phase III study of bosutinib as first-line therapy for patients with newly diagnosed chronic-phase CML. The trial is currently accruing patients. Second-line Therapy Dr. Cortes presented a multicenter phase I/II study in patients for whom prior imatinib therapy failed.1 Phase I was a dose-finding study that included 18 patients treated with bosutinib at 400, 500, or 600 mg/d. The phase II trial included 276 patients treated with bosutinib at 500 mg/d. The median age was 52 years, median time from diagnosis was 4 years, and patients had been on prior imatinib therapy for a median of 2.3 years. About 70% were imatinib-resistant, and 30% were imatinib-intolerant. At a median follow-up of almost 3 years, median duration of bosutinib therapy was 13.7 months. Three-quarters of patients had dose interruptions, and 45% required dose reductions. The dose of bosutinib was escalated to 600 mg in 33 patients (22%). Of the 109 patients evaluable for best response, an overall response was seen in 102 (94%), and complete hematologic response was observed in 99 (91%). Of the 214 patients analyzed for cytogenetic response (CyR), a major CyR was observed in 136 (64%) and complete CyR was seen in 106 (50%). Of the 151 patients evaluated for molecular response, a major molecular response was seen in 79 patients (51%) and a complete molecular response was seen in 49 (32%). Response rates were higher in imatinib-intolerant patients than in imatinib-resistant patients. Time to achieve a major CyR was about 6 months, but responses continue to improve over time, Dr. Cortes said, and are continuing well into the second and third years of therapy. At 2 years, median progression-free survival (PFS) was 77% in imatinib-resistant patients and 86% in imatinib-intolerant patients. The majority of patients are still alive, Dr. Cortes said. Adverse events on treatment included diarrhea in 84% (grade 3/4, 9%), rash in 34% (grade 3/4, 9%), nausea in 44% (grade 3/4, 2%), and vomiting in 36% (grade 3/4, 3%). Fluid retention was uncommon, and pleural effusion occurred in 3%. The rates of grade 3 or 4 myelosuppression were as follows: thrombocytopenia, 24%; neutropenia, 16%; and anemia, 12%. Third-line Therapy A related poster focused on third-line therapy with bosutinib.2 The poster, presented by Hanna J. Khoury, MD, Winship Cancer Institute at Emory University in Atlanta, showed that bosutinib was effective and well tolerated as third-line therapy in 90 patients with chronic-phase CML in whom both first-line imatinib and second-line dasatinib had failed. In imatinib- and dasatinib-resistant patients, a complete CyR was reported in 6 (22%) of 27 evaluable patients, a complete hematologic response was reported in 18 (86%) of 21 evaluable patients, and a major molecular response was observed in 6 (27%) of 22 evaluable patients. Cytogenetic and molecular response rates were higher in the 23 patients who were on study due to intolerance to imatinib or dasatinib. The starting dose of bosutinib was 500 mg/d, with escalation to 600 mg if required. Median duration of treatment was 6.1 months in this ongoing phase II trial. Thus far, 3 patients have died and 14 have had disease progression. With a follow
RE: [CMLHope] Re: French health service further investigating Gleevec
CML is my second cancer. I too want to know all of the risks and potential side effects, especially as more TKIs, and therefore more choices, become available. My medical team and I balance multiple considerations, and need data to do so. We have already had to address the potential risk of increasing the chance of a recurrence of the first cancer while considering changing my TKI. This involved two expert opinions, one of which was inaccurate. Fortunately we were able to consult with a third expert, one who is only focused on CML, and get the data we needed to make the right choices. Separately, I feel very strongly that patients with any type of cancer deserve to know the full risks they face from their treatments, including the risk of developing blood cancers down the road, so they can make informed choices, be aware of the potential warning signs, and optimize their chances for recovery. Pat Elliott Phoenix, Arizona -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] French health service further investigating Gleevec
Hi Vivi - This study from MD Anderson published in August 2011 found no current evidence to suggest that exposure to TKIs increases the risk of developing second cancers. Regards, Pat Elliott Phoenix, Arizona http://www.ncbi.nlm.nih.gov/pubmed/21846902 Abstract Success of tyrosine kinase inhibitors (TKIs) in Chronic Myeloid Leukemia (CML) has given patients hope for a long disease-free-survival. A longer-survival raises the question of late-effects including the development of another malignancy. Records of 1445 patients with CML/Myeloproliferative Neoplasm or other hematologic malignancies treated with TKIs were reviewed to investigate the frequency and characteristics of second malignancies (other than AML, ALL or MDS). The number of second cancers was compared with the number expected from the Surveillance, Epidemiology, and End Results database. After a median follow-up of 107 (range 13-362) months after CML/MPN diagnosis, 66 (4.6%) patients developed 80 second cancers, including skin (31%), prostate (15%), melanoma (13%), digestive system (10%), kidney (4%), thyroid (4%), breast (3%), CLL (3%), hepatobiliary (3%) and other cancers (14%). Excluding non-melanoma skin cancers, 55 second cancers were seen in 51 (3.5%) of all patients treated. The risk of second cancer was lower than expected risk (observed-to-expected ratio 0.6, 95% confidence interval 0.44-0.81). Second cancers occur in a small percentage of patients receiving therapy with TKIs for hematologic malignancies, mostly CML. There is no evidence at the moment to suggest that exposure to TKI increases the risk of developing second cancers. -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Vivi Sent: Tuesday, September 13, 2011 4:47 AM To: CMLHope Subject: [CMLHope] French health service further investigating Gleevec In a recent article in L'Express, the French equivalent of Time Magazine, there is a report on the French health institute's expanded investigation of a group of cancer drugs, including Gleevec. The investigation of Gleevec is aimed at learning whether its use leads, over time, to a risk of additional or secondary cancers. I believe this is something I am going to talk to my onc about, to see if she is aware of the study and, if she is, to find out if she knows of any preliminary results. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] leukemia heredity
You're welcome Ruth, happy to help. Glad your brother is taking a stronger interest in learning more, we have several myeloma programs on Patient Power for him. While you're in there, you may also find some of the CML programs helpful too. Patient Power's founder, Andrew Schorr, is a CLL survivor, and I'm both a CML and breast cancer survivor. We have a strong focus on blood cancers, as well as many others, in our interviews with top doctors and inspiring patients. www.patientpower.info Best regards, Pat Elliott Phoenix, Arizona -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of marcon Sent: Tuesday, August 30, 2011 8:48 PM To: c...@yahoogroups.com; cmlhope@googlegroups.com Subject: [CMLHope] leukemia heredity After I read the replies from Pat Elliott and Suzie Q I realized I needed to clarify my reason for going to a geneticist. It wasn't because of the family history of leukemia, but because of breast cancer history. My sister had breast cancer. I had the test for BRCA 1 and BRCA 2 , and the result was negative. As I recall, the geneticist was interested only in the medical history of my parents and siblings. Aunts, uncles, and cousins didn't seem to matter. I think I had this test about 3 yrs. ago. (About 4 years ago I joined The Sister Study. The study follows the sister of a sister who had breast cancer. It's a 10-year study, partly government funded. The study is a questionnaire that asks for medical history, and health, exercise, and dietary habits. The questionnaire is updated periodically.) Re the interview on Patient Power, I'll be sure to watch it myself. And I will pass it along to my brother. When 1st diagnosed he said he didn't want to read anything about MGUS. Whatever the dr. told him was enough. Now, about 6 months after dx, he is receptive to new information about MGUS and myeloma. So thank you, Pat, and thank you, Suzie Q, for your help and understanding. My best to you, Ruth Marcon -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Newly diagnosed
Hi Drazen, and welcome to the CML Community. Most of us have been in your shoes, and know the early stages are a critical time where you want to learn all you can, and are absorbing a lot of information. There are literally hundreds of resources you can go to, as well as support groups like this one where people share their personal opinions and experiences. It's easy to hit information overload very quickly - there's a whole new language and much more to learn right now. You will get there, but it takes some time. I suggest that you start your research with the organizations that are dedicated to providing current, accurate CML information for patients. These include the National CML Society in the United States and the CML Society of Canada. If you are in another country I would be happy to help you locate support there. To address your specific question on PCR tests, I'm providing some links below. Best wishes to you, and feel free to also write me via direct message if I can be of further support. Pat Elliott Phoenix, Arizona http://www.nationalcmlsociety.org/living-cml/monitoring-tests http://www.cmlsociety.org/?q=node/87 -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Draz Sent: Wednesday, August 03, 2011 1:32 AM To: CMLHope Subject: [CMLHope] Newly diagnosed Hi all, First time poster here, recently (3 weeks ago) I've been diagnosed with CML at a chronic stage with white bloodcell count 309. Treatment started of with Glivec (Imatinib) and almost 2 weeks ago they switched it to Nilotinib and I was placed in the researchgroup. Last week Thursday my count was 64 and the doctor said it was ok for me to start working a few hours a day and so on. All great news considering it's cancer, we're talking about. Now according to the Nilotinib research documentation I should be receiving PCR results but I have no idea when or what those actually are. Can someone shed some light for me when these results start coming in cause so far I've only been getting white bloodcell count. Regards Drazen -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Something new cropped up:
Hi all - I too have experienced skin, hair and nail changes since starting treatment, mostly the type of changes one sees when skin is extremely dry. I've found articles related to dryness and traditional cancer treatment to be helpful. There are several tips for nail care in the following article: Chemotherapy and Your Nails: How to Care For Them, from women's health site, EmpowHER.com. While the article is written to deal with traditional chemotherapy it does offer some helpful information and tips for us as well. http://goo.gl/fXR3g Hope this helps! Pat in Phoenix -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] 200mg/day effective for normal male?
The risk is a lack of response and that could lead to multiple complications including going into blast crisis. This could put the patient's life at risk. The standard dosage is 400 mg/day. How is the patient being monitored and what have the tests shown? Has a reason been given for not following the standard protocol for CML treatment? Pat in Phoenix -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Dour Daze Sent: Friday, June 10, 2011 1:26 PM To: CMLHope Subject: [CMLHope] 200mg/day effective for normal male? What would you expect to transpire to a newly diagnosed cml patient chronic phase... male 6'0 if he is treated for a long period of time (more than 7 months) on 200 mg/day of Gleevec? What is the risk of the lower dosage? DD -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] A New Blog on Social Media for Patients
Please note the following about the prior message: The Patients Voice is one of the many patient-focused services from Healthcare Landscape. Healthcare Landscape is a medical market research company, which conducts surveys with all the different people involved in the healthcare process. These range from patients and their carers, to medical professionals such as nurses, pharmacists, physicians and academics. Our mission is to discover what they think and what their experiences have been. -Original Message- From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of thepatientsvo...@googlemail.com Sent: Friday, March 25, 2011 2:56 AM To: CMLHope Subject: [CMLHope] A New Blog on Social Media for Patients A New Blog on Social Media for Patients Dear Friends, Welcome to the latest blog from The Patient Experience. With this blog we are exploring the usage of social media by patients. In particular the possible uses of a new web site called Treatment Diaries for patients. It would be great to have your comments and thoughts about the site and perhaps anyways it could be improved. To visit the blog please go to http://www.patient-experience.com/index.php/treatmentdiaries-com-social-medi a-for-patients/ Blogs are a wonderful way for our members to connect with each other. This is a great opportunity for you to share with other members and enrich all our knowledge. Do feel free to add any sources of information which you think will be of interest. Feel free to share this blog with anyone you know might be interested. If you have any suggestions for future blogs or please do let us know. Best wishes Belinda Belinda Shale The Patients Voice http://www.thepatientsvoice.org -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] no more posts
Livia - You raise a good point that concerns many people with health conditions, not just those with CML. The ability to obtain employment, to remain employed and various other aspects of life are now determined in part by some companies on the basis of the information they are able to obtain through sophisticated Internet search profiling systems. In order to be active and participate in groups you can use just your first name or develop a personal user name and use a throw away email address (gmail, Hotmail, etc.) that does not directly identify you or tie to your personal home or business information. There are many ways to participate online and remain safe. It's important to understand that everything you post is online forever and is searchable in some way. You are free to do whatever you think is best for you and your personal circumstances, and it is wise to do so. This is just another aspect of advocating for and protecting one's health in an Internet world. Thank you for bringing it up. Best regards, Pat From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of livia klescova Sent: Friday, March 25, 2011 7:22 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] no more posts I LOVE this group, but I am also concerned that our private information we share here is available to the public. You can google your name and first thing that posts is CML. That's why I keep reading posts, but rarely publish anything. Maybe I can change my name from my first name and last name to some nickname? Any suggestions? Livia. --- On Wed, 3/23/11, sylwia sylwiamrow...@gmail.com wrote: From: sylwia sylwiamrow...@gmail.com Subject: Re: [CMLHope] no more posts To: cmlhope@googlegroups.com Date: Wednesday, March 23, 2011, 2:55 PM Hi,. I tried to stop receiving messages of this group, twice! And To unsubscribe from this group, send email to http://us.mc1207.mail.yahoo.com/mc/compose?to=CMLHope-unsubscribe@googlegro ups.com cmlhope-unsubscr...@googlegroups.com - DOESN'T WORK :( I have not been posting in this group in moths, too. Pls, let me know if you'll find the way to stop receiving messages. And thanks for information about public acces to this posting group. Best wishes :) 2011/3/23 cmler lbai...@gmail.com http://us.mc1207.mail.yahoo.com/mc/compose?to=lbai...@gmail.com Just wanted to let you all know i have stopped posting in this forum because even though Google tells you this is a private group and only members can read it, other websites that archive public groups are archiving our messages and making them available to the public. I've tried to get this fixed, but cannot. Therefore, I have not been posting in this group in months and will not from now on. I just thought the rest of you should know. -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com http://us.mc1207.mail.yahoo.com/mc/compose?to=CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com http://us.mc1207.mail.yahoo.com/mc/compose?to=CMLHope-unsubscribe@googlegro ups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Gleevac
Sounds like you guys would really like to meet each other. Why don't you form a Florida group through the National CML Society? They have a CML Connection program, where patients in different cities can get together and support each other. We just had a nice meeting yesterday of CML patients in the Phoenix, Arizona area. You can find more information here: http://www.nationalcmlsociety.org/what-we-do/cml-connection You can send an email to conn...@nationalcmlsociety.org for more information. Pat from Phoenix -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: mussel cramps comming more frequently (need advice)
I've tried all of Barb's recommendations and have found them helpful. Also, here are a couple of references with good info. Mayo Clinic: http://www.mayoclinic.com/health/muscle-cramp/DS00311 Google Health: https://health.google.com/health/ref/Charley+horse Pat in Phoenix -Original Message- From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of Barb Sent: Monday, November 29, 2010 6:41 AM To: CMLHope Subject: [CMLHope] Re: mussel cramps comming more frequently (need advice) I have been on gleevec 5 years and on tasigna now. 3 years.. both provide the cramps you describe. Lots of water is helpful yes. Also drinking a glass of tonic or quinine ( Lime but no gin!!) provided me relief from those cramps that wake me in the night. taking calcium pills and good vitamins help too. Barb in AZ On Nov 28, 1:24 pm, mustar...@aol.com wrote: In a message dated 9/23/2010 8:41:31 A.M. Eastern Standard Time, bf...@hotmail.com writes: I, too, have had cramps and in weird ways. The arch of my foot, the middle of my back, my thumb, etc. My primary care doctor immediately said I was dehydrated. Because of the gleevec, the electrolyte imbalance can happen sooner for us than for most people. So, although most folks wouldn't be dehydrated at the same water intake level, we will be. I've started being a lot more diligent in drinking water and the cramps have really eased off. If I have a rough day at work with a lot of meetings and a lot of coffee coupled with not much water; that night I will notice the cramps are worse. I've also noticed that if I do a lot of yard work, for example, and don't drink a good amount before starting, the cramps are much worse. So, it all seems to tie together. I was struck by how quickly and definitively my doctor said dehydration. Like most of these things, everyone responds differently, but that's what I've been doing to combat them. Bob On Sep 22, 9:47 am, DAWN RODEGHIER drodegh...@sbcglobal.net wrote: Hello to all, I've been on Gleevic since it was approved for use in the US in 2001. After about a year I started having cramps in my legs at night. Now I get cramps in other areas also, hands, feet, back. They are coming much closer together and I've been losing a lot of work. Many of you have complained of this problem, has any ones Oncologist tried mussel relaxers and if so did they help on the occasions when the cramps were happening. Any help and or advise is more than welcome! Jim Rodeghier -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] AARP Medicare
AARP is hosting a free webinar on the new healthcare law. The New Health Care Law: Things You Need to Know Wednesday, October 27, 2010, 7:00-8:00 PM Eastern Time (6:00-7:00 Central, 5:00-6:00 Mountain, 4:00-5:00 Pacific) Questions? E-mail newhealthcare...@aarp.org. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Anyone aware that Glivic and Panadol pain tablets taken together will create extensive Liver damage
The product package information shows that paracetamol should not be taken with Glivic/Gleevec. You can find more information through a Google search as well. Pat in Phoenix Some medicines and Glivec may interfere with each other. These include many medicines that are eliminated from the body through the liver: St. John's wort, a herbal medicine found in many products that you can buy without a prescription paracetamol, a medicine found in many common pain relievers and cold remedies (e.g. PanadolR, PanadeineR, CodralR, TylenolR) antibiotic medicines such as rifampicin, ketoconazole, erythromycin, clarithromycin, itraconazole antiviral medicines used to treat HIV/AIDS dexamethasone, a steroid medicine medicines for high cholesterol, such as simvastatin medicines used to treat epilepsy, such as phenytoin, carbamazepine, phenobarbitone warfarin, a medicine used to prevent blood clots some medicines used to treat mental disorders and depression some medicines used to treat high blood pressure and heart problems cyclosporin You may need to take different amounts of these medicines or you may need to take different medicines. Your doctor and pharmacist have more information. If you have not told your doctor about any of these things, tell him/her before you start taking this medicine. _ From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of pjgeary Sent: Sunday, October 03, 2010 3:57 PM To: cmlhope@googlegroups.com Subject: [CMLHope] Anyone aware that Glivic and Panadol pain tablets taken together will create extensive Liver damage Anyone aware that Glivic and Panadol; or paracetimol pain tablets taken together will create extensive Liver damage Any data, I am being advised by my Pharmacists to stop immediately as their syatems are red carding this Any news anywhere _ From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of cmlhope+nore...@googlegroups.com Sent: Sunday, October 03, 2010 11:17 PM To: Digest Recipients Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 1 Message in 1 Topic Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics * Optimum Sprycel dose [1 Update] Topic: Optimum Sprycel dose http://groups.google.com/group/cmlhope/t/607e18111b280f04 peg peghardi...@hotmail.com Oct 02 01:18PM -0700 ^ Okay... for Beth and those waiting for the outcome of my meeting with the doc that did Sprycel developemental research...here it is: 100mg IS the recommended dose. Does he have patients on less?... Yes...and here is his criteria for reducing the dose: 1. Side effects (he says all side effects on this drug are reversible with reduction or discontinuation)...or...2. Zero achieved and maintained on PCR...verified at least once with BMB. In regard to starting at a lower dose and tapering up to 100mg, he said he does not understand why MD's would want to advise their patients to do this, and cautioned against it. He understands that the thought is that it gives the body a chance to adjust however, he feels that it also gives the chromosomes a chance to become resistant and could result in Sprycel not being effective. Sort of the same way that taking less of an antibiotic than you would need to overcome an infection allows the infection to become resistant to the antibiotic. For those who are changing from Gleevec because of serious GI side effects and are concerned that Sprycel might be the same... he said that Gleevec is well recognized as the cause of severe gastritis and severe diarrhea in many folks. While there have been some incidents of Colitis with Sprycel, not many, and generally speaking most folks will not have any serious GI side effects on Sprycel. However, a break between the two is recommended to allow GI irritation from Gleevec to settle before introducing Sprycel. In regard to pain medications for headache, etc Contrary to popular belief, with Sprycel, Tylenol is OKAY! However, Aspirin, Ibuprofen, Advil, Motrin, Aleve, Naproxin Sodium, or narcotics containing any of these ARE NOT OKAY. They can thin the blood too much when combined with Sprycel. Caution must be taken when adding any med to Sprycel that can thin the blood. In my case, I do occassionally use Celebrex, which can cause the same problem, however, he said it is probably okay as long as my platelets are normal and I only use it occassionally. He believes that current research will soon produce something better than the current TKI's but for now both 2nd gen TKI's, Tasigna and Sprycel, are stronger than Gleevec and should produce better results at supressing CML in more people. Hope sharing this is helpful to you. Keep the faith! peg -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com
RE: [CMLHope] Gleevic/Tasigna
Hi all - Here's the FDA's announcement about approval of Tasigna for first line use. Pat in Phoenix http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm216181.htm Excerpts: FDA Approves New Indication for Tasigna Approval expands use in treatment of rare type of leukemia The U.S. Food and Drug Administration today approved a new indication for Tasigna (nilotinib) for the treatment of a rare blood cancer when it is first diagnosed. The cancer, called Philadelphia chromosome positive chronic phase chronic myeloid leukemia (Ph+ CP-CML), is a slowly progressing blood and bone marrow disease linked to a genetic abnormality. The FDA granted Tasigna a priority review for Ph+ CP-CML. The agency completed the review in six months. The new indication for Tasigna was approved under the FDA's accelerated approval program, which allows FDA to approve a drug to treat serious diseases with an unmet medical need based on an endpoint thought to reasonably predict clinical benefit. The company is required to collect additional long term efficacy and safety information data confirming the drug's benefit. The accelerated approval program provides earlier patient access to promising new drugs while the confirmatory clinical trials are being conducted. _ From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of bkbar...@aol.com Sent: Sunday, August 01, 2010 3:55 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Gleevic/Tasigna Clarification! Tasigna is not THE first line tx, but it now is A drug which may be used as a first line option along with Gleevec...I believe Dasatinib is soon to follow as it is far more potent a drug than Gleevec..But the data available on the two more recent drugs is much smaller than Gleevec's run of the last 10+ years. So Gleevec is tried and true, but for many who are intolerant or resistant to the Gleevec...it's nice to know there are other options...glad you are doing so well... Stay well!!! Beth -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Re: Harley Ride For Leukemia
Kathy - Thanks for the update! I've posted information about Greg's ride, and a link to his site, on the National CML Society's page on Facebook. http://www.facebook.com/pages/The-National-CML-Society/218127862572?ref=ts You're right, his story is one of encouragement for everyone with CML. Please send thanks to him on behalf of NCMLS. Pat in Phoenix -Original Message- From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of kda...@cin.com Sent: Saturday, July 31, 2010 5:37 AM To: CMLHope Subject: [CMLHope] Re: Harley Ride For Leukemia Update on my husband's Harley ride for Leukemia from Key West to Homer, Alaska He arrived in Homer in 12 1/2 days, 9,446 mi. This was no 'ride in the park'. 700+ riders started in Key West about 180 finished. Riders had to follow a certain route, go through check points and sleep beside their bikes. He had encounters with bears, mountain lions had to have new pistons put on the bike, but no health problems. He has been on 200mg/day of Gleevec for 10 yrs. This should be an encouragement to all those diagnosed with CML. We don't have the total amount of money raised for Leukemia Lymphona Society, but I will post it when we find out. You can see whole map with lots of photos at: www.hokaheygreg.com, click on Follow Me. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] Post some photos
Yes, thank you Ted, the photos were wonderful Pat (Phoenix, Arizona) _ From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: Thursday, July 22, 2010 9:07 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Post some photos Ted, Thank you for the wonderful photos! Angie (CANADA) --- On Fri, 7/23/10, Ted fanruif...@gmail.com wrote: From: Ted fanruif...@gmail.com Subject: [CMLHope] Post some photos To: cmlhope@googlegroups.com Date: Friday, July 23, 2010, 3:17 AM Hi everyone ,this is Ted, 19 years old from China,i was diagnosed with CML since Feb ,2010,with the bcr/abl of 0.55. I started to take Gleevec since Feb 21,2010. The effect is awesome , this May I checked the bone marrow again, I have reached the CCR, and the bcr/abl is 0.02. These photos were taken by myself in Chengdu Research Base of Giant Panda Breeding Camera is Canon Pro1,lol -- [CMLHope] A support group of http://cmlhope.com http://cmlhope.com/ - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Hey Everyone
Greetings to all, this is Nana Pat, I thought since we have (2) Pat's maybe this would be less confusing. In my last post, I was telling everyone how my PCR numbers have been climbing and I was to see a heart specialist, and then maybe put on Spyrecel . Well, I decided I would go through my primary doc to have this set up, so I wouldn't have to drive 100 miles for an EKG which is not going to tell them what they need to know...and I haven't gotten around to it YET but will soon. Regardless, I am going to continue the Gleevec as long as I can force any amount I can down. The pills that I was put on for appetite, I really can't see a difference in my appetite but sure is harder to wake up as I take them at night but if I take it in the daytime, I'm droopy. Hope this will soon pass and I get an appetite. In the meantime, I am smoking a lil weed when given to me...and my daughters friend has been so kind to share with me as much as she can. It really gives me an appetite. In the meantime, I wanted to ask someone who might knowcan I take a baby aspirin a day or maybe one every other day? Seem like I was thinking I was told not to take aspirin. Anyway, I thought this might keep my blood a lil thinner to get through these clogged arteries. Someone respond please if you know. I'll keep in touch when I go to the heart specialist and let everyone know what is going on. Also, where is the best place to read up on the sprycel? I still don't think it is for me, but would like to research it. I hope all is well and safe and continuing to beat the beast(CML). Good Luck to those of you who are newcomers...we know how you feel and we understand. Love, Peace, Hope Prayers, Nana Pat (the TN Turtle) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Happy Birthday/Anniversaries
Just wanted to congratulate everyone on their continued success...it seems we have several members who have much to be thankful for and are celebrating. Gleevec is such a miracle pill but then there is a price to pay for it keeping us alive. I had asked in an earlier post how often is it necessary to get a BMB. I have had only one, about 4 months after being diagnosed in Nov. 2004. When I ask, my doctor at Vanderbilt tells me the PCR test is all that is needed. All my blood work, WBC, platelets, etc have always been normal. I'm a bit worried since so many of you seem to get them yearly. If someone is a patient of Dr. Druker's, can you tell me what his views are on this because I consider his opinion very valuable. I appreciate everyone sharing information. Love, Peace, Hope Prayers, Pat R - Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Congratulations Jeanie
I'm not a 3 yearer YET, but just wanted to congratulate you. I've had a heck of a 2 years trying to adjust to the Gleevec, found out I have emphysema, I've suffered but it's been worth it just to still be here. So I no longer take my b'days for granted. May you have continous success. Love, Peace, Hope Prayers, Pat - Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Spring Greetings to My CML Family
Hello Everyone, Just wanted to email everyone and let you know that even though I haven't posted in a while, you are still in my thoughts and prayers. For the past few months, I haven't been on the computer very much at all, not even to read the posts. I read several last night and again tonightand still trying to catch up. I've sorta been in this "funk" state of mind and to be honest trying to get my mind completely off of the CML for a while. I'm having trouble tolerating the Gleevec. I end up a lot of times throwing it back up when I take it or I have dirrehea so bad, it doesn't stay in my system long enough to work. My numbers are back up...6900 out of 100,000. I went to the doctor this past Thursday but won't know those results for 2 weeks. I'm anticipating they will be up even higher. I had the virus/flu (doctors really don't know what to call it but are prescribing the TamiFlu for all the different cruds/viruses that is rampant in my area.) Everyone in my family had it one by one and I escaped it while everyone else was so sick.but BAM I was the last to get it. I was deathly sick for 48 hours. My temp got up to 104.5 and I couldn't get it down...I was like this for about 12 hours. Once I was able to get the Tamiflu pills and fever reducer to stay down, my fever finally broke. I've got a pain in my stomach right above my belly button that will not go away so having a catscan for it next week. In May, I will probably be undergoing exploratory surgery for the edometriosis that is killing me. It's just one of those things I've put off and tried to live with. My sister-in-law Benny that I took care of for a year when she had this muscle disorder just last week had to have a complete hysterecomy. It was cancer and it was from her doing nothing for years about her endometriosis. Cancer was in her uterus, ovaries and lymph nodes in that area. She is having surgery again as soon as she is recovered from this surgery for breast cancer, and they also found a mass on her spleen. She has had a rough time and has not been a good patient at all. It's been so tramatizing for me and her 2 sisters just trying to be there for her. My husband had a scare recently. We were told he could have prostate cancer. He had the most severe case of prostatis he's ever had(always had trouble due to kidney stones over the years) but his PSA test came back good but the catscan showed up calicification in his prostate gland and he is going to have surgery for that in the near future. He only has one kidney so he is at danger of being blocked off should his prostate gland swell again. We don't know all the details about the surgery yet. Jim put it on hold until his sister had surgery and until we all got over the crud, but it will be scheduled for this month some time. It's just been a lot going on and none of it good I'm afraid. I am Godmother to 2 little girls, a lifelong friend of my daughters and I have been babysitting them until their mother gets back on her feet. It's a long story but her landlord sold the house she was living in and she hasn't been able to find another place yet so they are all here with me at the present time, I keep them while she works. I partially cleaned my mother's former room out so they would have a room. I don't know how long I will be able to do it but I'm really enjoying it right now. The girls are 3 and 5, the 5 year old is in pre-school so I only have 1 of them most days. Children just have a way about them of brightening your day and lifting your spirits. They call me Nana-Pat and they love being here with me as much as I love having them here with me so we all prosper from the situation. If my daughter doesn't go back to the monster she was with, I think my daughter and her friend may rent a place and be room mates and split the bills. Thats their plans at the moment.I've lost so much weight I had to remove my rings from my fingers as they were falling off. I'm down to 111 lbs now. I look so thin, pale and frail I just hate going out in public and the first thing I hear is, how much weight I've lost and how I almost didn't recognize you. I was hoping by now to be able to get the BMS drug but my doctor keeps telling me I don't qualify. I don't understand. Hasn't it been FDA approved? It seems to me since I am not tolerating the Gleevec well and all the side effects, surely I could get it. I've started having the night sweats again and the bad headaches, and the bone pain is horrific at times, not to mention how severe the dirrehea is. I've dealt with it for 2 years now but I'm starting to worry about myself and the doctor doesn't seem to be very concerned. He's mentioned transplant but why he keeps bringing it up I don't know as I do not have a donor STILL. We have this same conversation every visit. I thought my mind was screwed up and my memory.but my doctor.I just don't know about him.Has anyone had any problems with vision problems due to the Gleevec. I've alwa
