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, in the
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.
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] A
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
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
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
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
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
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] 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
