Re: [CMLHope] Re: Newly diagnosed with CML
Jeanie...hope you are doing well! Tom In a message dated 3/12/2013 6:02:06 P.M. Eastern Daylight Time, icandoall...@aol.com writes: Good to hear from you Ted. Jeanie Sent from my iPhone On Mar 12, 2013, at 1:11 PM, _TEDBDD@aol.com_ (mailto:ted...@aol.com) wrote: Myl... Don't be too nervous about switching drugs...as you can see from my history below, I have been on 3 TKI's and Sprycel was the answer for me. In fact they had to drop the dossage level from the standard of 100mg/day to 20mg/day because of pleural effusion issues. So far it seems to be keep the CML under control and the side effects are much less than on Gleevec and Tasigna. You might want to start a brief history of your journey as some of us do so that you can communicate the highlight of your journey easily with other CMLers (see below). I have found that each of us seems to react differently to these wonder drugs so you just have to keep experimenting until you find one that works with livable side effects. All the Best! Tom in KY Tom, BD: 8/1941 Updated:8-27-12 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 On Flecainide for AF...still had frequent episodes Q PCR bone@ 0.17 on 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood-7-29-09 ! Started Gleevec-400mg/day-7/31/09 Developed rash ~ 8/19/09 Rash treated with Steroids..improvement Rash worsens~9/22/09 Stopped Gleevec-9/28/09 Restarted Gleevec @300mg/day-10/8/09 Stopped Gleevec-10/13/09-toxic rash\ AF returned infrequently Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 Some AF...increased FLecainde..1, 2x/day Q PCR bone..0.07 Stopped Alcohol…no AF, ½ Flecainide 2x/day Q PCR Blood…Non Detectible-12-13-10 Q PCR Bone..0.01--2-25-11 Q PCR Blood…Undetectible-5-19-11 Reduced Flecainide to 1/2 per day Pleural and pericardial Effusion: stopped Sprycel-12-6-'11 Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction Pleural Effusion clear 12-21-11 Started Sprycel 70mg/day..12-23-11 QPR bone 0.01...2-16-12 Started Sprycel 50mg/day..3-10-12 Chest pains...slightly more PL Eff 4-19-12 Steroid Dose pack to alleaviate..still on 50mgs Change to 20 mgs/day Sprycel..4-26-12 Chest clear, effusion gone-5-14-12 Q-PCR Blood-Undetectible-6-13-12 Neuropathy moving up legs, weakness noted ~7-12 Q-PCR Blood MDA-0.01…8-21-12 In a message dated 3/11/2013 2:55:44 P.M. Eastern Daylight Time, _perkussion@msn.com_ (mailto:perkuss...@msn.com) writes: It seems Gleevec is the first line of defense for CML and is used for other cancers as well. I experienced most the side effects everyone else does but also had severe skin irritations and rashes all over my body. While it brought my WBC counts to a normal range, I just couldn't stand it any more. My onc put me on Sprycel (dasatinib) and I maintained good blood cell counts without all the side effects. I still have minor skin irritations but I can control that with topical lotions and continue to work. No cramps, bone aches, nausia, or diarhea and not the fatigue I had on Gleevec. There are new drugs approved now but Gleevec has been around the longest and is known to work so they usually turn to it first. You will learn to live with CML and get to where it does not take such a toll on your body. On Wednesday, March 6, 2013 11:12:35 PM UTC-6, myli...@_yahoo.ca_ (http://yahoo.ca/) wrote: I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has
Re: [CMLHope] Re: Thankyou
Hi all, Just to keep the newbies updated as to what to expect on Gleevec and other Meds. I started was dx in Jan 2004 after flying home from a trip. I was so tired I couldn't hardly put one foot in front of the other, and as walking is my daily exercise, I started to complain to my son. He said for me to go to the doctor; well I didn't want to but went to my PCD and he insisted, even though I said I really didn't need it. I had never had much sickness in my life, and really didn't think it was anything serious. I had noticed a rapid heart beat and could feel my heart beating after exertion for while at rest for a while, but was trying to ignore it. The next day my PCD calls and tells me my WBC and platelets are in the millions; he had already gotten me a doctor's appointment with a local oncologist for the evening. I still didn't want to go, but my son insisted. From that first doctor's appointment to now, my life was changed forever. At that time my oncologist had a blood lab in his office so he took a blood sample, and without any further testing, he told me he had good news and bad news. The bad news was that I probably had leukemia; the good news was that they had put a drug called Gleevec on the market, and that it would probably save my life. As I said, my platelets and WBC were in the millions. He immediately put me in the hospital as he said I could have a stroke from the high platelets. I was hooked up to a blood cleaning machine, and had my blood cleaned for 4 days straight, however it didn't do much good. They were giving me huge doses of Hydroxyurea along with a few other drugs. As I had never taken many pills, I ask the nurse what they were and the side effect. She didn't know but went to look it up. It seems the pills were huge to me and there were a lot of them. In the meantime I had to get the Gleevec okd by my insurance and there was a $2000 copay. more later-- Blessings Jeanie3 2004 dx put on Hydroxurea and Gleevec 2008 Sept put on Tasigna 2008-9 Put on Sprycel In a message dated 3/10/2013 9:17:11 P.M. Eastern Daylight Time, mylis...@yahoo.ca writes: Thanks Pat - I appreciate it From: Pat pfemail...@gmail.com To: CMLHope cmlhope@googlegroups.com Sent: Sunday, March 10, 2013 9:00:12 PM Subject: [CMLHope] Re: Thankyou Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is _http://cmlsociety.org/_ (http://cmlsociety.org/) and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, _mylis...@yahoo.ca_ (mailto:mylis...@yahoo.ca) wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I wouldn't want to change from Gleevec is that the patent expires in April 2013 in Canada.which will hopefully make it more affordable. This is a big issue for me, as I was recently terminated at work, while I've been off on sick leave - so no more benefits once the notice period is over. I'm sure that I will be denied benefits at any new job I get as this will then be a pre-existing condition. So affordable meds would definitely be good! I never knew medication could be so expensive! I keep telling myself I am not allowed to throw up, because it would be like throwing up $130...lol. Thanks again to all who replied. Pat and Michele - I will have a read through the links you sent me tonight; thanks for the info. 18's back to you Marty. Mylissa -- -- [CMLHope] A support group of _http://cmlhope.com/_ (http://cmlhope.com/) - You received this message because you are subscribed to
Re: [CMLHope] Newly diagnosed with CML
My first onc told me he had a male patient who was in so much pain in his legs and joints he could barely stand it. I think he was wondering why I didn't. I had all the sweats and fevers during my first battle, and it was probably a little of both the CML and the meds. I use to wake up in a sweat and take something for the fever. My spleen never became a problem, maybe because they caught it so soon. My platelets and WBC stayed high for a while; it was a mystery to my onc. Blessings Jeanie3 In a message dated 3/10/2013 10:37:07 A.M. Eastern Daylight Time, mylis...@yahoo.ca writes: I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm againam really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps -- -- [CMLHope] A support group of _http://cmlhope.com_ (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_ (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_ (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] CML Newbie
The platelets will come down; it takes a while to get everything under control; I managed on Gleevec by planning and eating a large breakfast to take with my pills. It seemed like to took forever for them to come down. My doctor checked my blood every few days in the beginning. Don't eat anything spicy and have a large meal when you take Gleevec. I never ate much breakfast and it was a challenge to come up with large meals but I did it. Jeanie3 In a message dated 3/10/2013 10:37:08 A.M. Eastern Daylight Time, mylis...@yahoo.ca writes: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [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_ (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_ (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] CML Newbie
Yes I was on Allopurinal as well for a while. I just remembered that when you posted. Finally taken off both when I went on Gleevec. In a message dated 3/10/2013 4:56:58 P.M. Eastern Daylight Time, wa2...@gmail.com writes: And hi right back at you. You didn't leave your actual name so I don't know who to address this to. All of what your now going through is what initially happens when your first diagnosed with CML and then put onto a TKI which Gleevec is one of. Some of the symptoms that you are experiencing may get much better as your body acclimates to the Gleevec, and some may just linger but in time you will adjust to most of these side effects. Don't be afraid if your doctor decides to switch you to another TKI because some are actually better then some others depending on your body. I'm just wondering why your doctor only put you on hydroxyurea initially and not Allopurinal as well. This drug helps get rid of any access uric acid thus avoiding any symptoms of the gout. Now just to let you know I had CML almost 23 years ago and have never been on any of these TKI's because none were around at the time. I had to get a bone marrow transplant. If any of these drugs would have been around then I would have probably opted for them rather then the transplant. Just because you have CML it shouldn't stop you from living your life. When you get used to having all of these side effects, and I will tell you that they will get better because of all that I have heard from people that are on them. Some have actually gone into PCRU and are not taking them anymore. PCRU is when they can not detect any more CML cells in your body. This may happen to some people on these TKI's So, mystery person, you just keep going on with your life because CML will probably not kill you. However I do suggest that you stay clear of speeding buses, they just may. Whenever I write something I always end it with two numbers... 18 which is a symbol for life. 18's to you mystery person Marty On Sat, Mar 9, 2013 at 4:17 PM, _mylissal@yahoo.ca_ (mailto:mylis...@yahoo.ca) wrote: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [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_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit _https://groups.google.com/groups/opt_out_ (https://groups.google.com/groups/opt_out) . -- -- [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_ (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_ (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
[CMLHope] Update on CML Treatments
Hi all - Dr. Jorge Cortes, one of the world's foremost CML experts, discusses new treatment options for CML and his thoughts about future directions in a new article for a physician publication from MD Anderson Cancer Center which is focused on current research and patient care advances. Regards, Pat Elliott CML patient and advocate OncoLog, March 2013, Vol. 58, No. 3 New Drugs Increase Treatment Options for Patients with Imatinib- Resistant Chronic Myeloid Leukemia By Zach Bohannan In the past year, several new targeted drugs have been approved as second-line treatments for imatinib-resistant chronic myeloid leukemia (CML). These drugs include the second-generation tyrosine kinase inhibitor bosutinib and the third-generation tyrosine kinase inhibitor ponatinib, which may change the standard of care for CML. CML treatment CML is caused by the BCR-ABL fusion protein, a result of the Philadelphia chromosomal translocation. The prevalence of this protein makes CML ideal for treatment using targeted therapies. For many years now, imatinib, one of the first and most successful targeted antineoplastic agents, has been the first-line treatment for CML. “Most CML patients are diagnosed in what we call the chronic phase, which does not carry any recognizable drug-resistant mutations in BCR- ABL, so imatinib usually works very well at first,” said Jorge Cortes, M.D., a professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. The main goal of CML treatment is a complete cytogenetic response, meaning an absence of detectable Philadelphia translocations in the bone marrow. Many patients treated with imatinib have complete responses, but the subset of patients who do not are then moved to a second-line treatment. Thus, there is interest in developing second- line therapies for imatinib-resistant CML, and several drugs are currently under investigation or have recently been approved by the U.S. Food and Drug Administration for this purpose. Bosutinib Because ABL is a tyrosine kinase, most candidates for second-line CML treatment are tyrosine kinase inhibitors, which include dasatinib, bosutinib, and ponatinib. Bosutinib is among the most promising of these drugs. It is generally considered more potent than imatinib, and it can overcome several of the mutations that render CML resistant to imatinib. The side effects of bosutinib are less severe—and most are less common— than those of some other tyrosine kinase inhibitors because bosutinib has less effect on the development of normal blood cells. For example, nilotinib, dasatinib, and several other tyrosine kinase inhibitors also inhibit growth factor receptors such as c-KIT and platelet- derived growth factor receptor. These receptors are important for the normal development of certain myeloid cell types. Bosutinib, however, does not affect these receptors as strongly as many other tyrosine kinase inhibitors and thus causes lower rates of neutropenia and thrombocytopenia than do nilotinib and dasatinib. Similarly, bosutinib causes lower rates of cardiotoxicity and pancreatitis than other second-generation tyrosine kinase inhibitors that are approved for treating imatinib-resistant CML. Conversely, some side effects might be more common with bosutinib. This lack of significant side effects is one reason bosutinib is so attractive. However, Dr. Cortes said, “Although all tyrosine kinase inhibitors are very safe compared with most other chemotherapies, there can still be adverse events, and doctors should explain and discuss possible side effects with patients.” The primary side effect associated with bosutinib is diarrhea, which can occur in up to 80% of patients. However, this is usually minor and manageable. Although bosutinib is superior to many other possible treatments for CML, it is not effective for all patients. For example, the T315I point mutation that can occur in the BCR-ABL gene renders CML resistant to imatinib, bosutinib, and most other tyrosine kinase inhibitors. Ponatinib Ponatinib is a very potent tyrosine kinase inhibitor that was specifically designed to treat the T315I point mutation while maintaining efficacy against all other known BCR-ABL permutations. Although ponatinib has many of the same side effects as other tyrosine kinase inhibitors, its ability to treat a previously intractable mutation makes it very promising. Because it is very effective against T315I-mutated BCR-ABL and in patients who have not responded to multiple other tyrosine kinase inhibitors, ponatinib was recently approved as a second-line treatment for CML patients. New first-line therapy? Stem cell transplant: offers curative potential but with greater risks compared to therapy with tyrosine kinase inhibitors; seldom used as initial therapy but considered for patients who have not responded well to other therapies. Because bosutinib shows so many benefits over other tyrosine kinase inhibitors, Dr. Cortes conducted some
Re: [CMLHope] Update on CML Treatments
thank you Pat, for sharing this article. Very informative. As I am now on Bosutinib, week six and advancing dose slowly, I am wondering if anyone else out there is currently using this drug and if so, what is your experience, side effects etc..Beth -Original Message- From: Pat pfemail...@gmail.com To: CMLHope cmlhope@googlegroups.com Sent: Wed, Mar 13, 2013 3:56 pm Subject: [CMLHope] Update on CML Treatments Hi all - Dr. Jorge Cortes, one of the world's foremost CML experts, iscusses new treatment options for CML and his thoughts about future irections in a new article for a physician publication from MD nderson Cancer Center which is focused on current research and atient care advances. Regards, at Elliott ML patient and advocate OncoLog, March 2013, Vol. 58, No. 3 New Drugs Increase Treatment Options for Patients with Imatinib- esistant Chronic Myeloid Leukemia By Zach Bohannan In the past year, several new targeted drugs have been approved as econd-line treatments for imatinib-resistant chronic myeloid leukemia CML). These drugs include the second-generation tyrosine kinase nhibitor bosutinib and the third-generation tyrosine kinase inhibitor onatinib, which may change the standard of care for CML. CML treatment CML is caused by the BCR-ABL fusion protein, a result of the hiladelphia chromosomal translocation. The prevalence of this protein akes CML ideal for treatment using targeted therapies. For many years ow, imatinib, one of the first and most successful targeted ntineoplastic agents, has been the first-line treatment for CML. Most CML patients are diagnosed in what we call the chronic phase, hich does not carry any recognizable drug-resistant mutations in BCR- BL, so imatinib usually works very well at first,” said Jorge Cortes, .D., a professor in the Department of Leukemia at The University of exas MD Anderson Cancer Center. The main goal of CML treatment is a complete cytogenetic response, eaning an absence of detectable Philadelphia translocations in the one marrow. Many patients treated with imatinib have complete esponses, but the subset of patients who do not are then moved to a econd-line treatment. Thus, there is interest in developing second- ine therapies for imatinib-resistant CML, and several drugs are urrently under investigation or have recently been approved by the .S. Food and Drug Administration for this purpose. Bosutinib Because ABL is a tyrosine kinase, most candidates for second-line CML reatment are tyrosine kinase inhibitors, which include dasatinib, osutinib, and ponatinib. Bosutinib is among the most promising of hese drugs. It is generally considered more potent than imatinib, and t can overcome several of the mutations that render CML resistant to matinib. The side effects of bosutinib are less severe—and most are less common— han those of some other tyrosine kinase inhibitors because bosutinib as less effect on the development of normal blood cells. For example, ilotinib, dasatinib, and several other tyrosine kinase inhibitors lso inhibit growth factor receptors such as c-KIT and platelet- erived growth factor receptor. These receptors are important for the ormal development of certain myeloid cell types. Bosutinib, however, oes not affect these receptors as strongly as many other tyrosine inase inhibitors and thus causes lower rates of neutropenia and hrombocytopenia than do nilotinib and dasatinib. Similarly, bosutinib auses lower rates of cardiotoxicity and pancreatitis than other econd-generation tyrosine kinase inhibitors that are approved for reating imatinib-resistant CML. Conversely, some side effects might e more common with bosutinib. This lack of significant side effects is one reason bosutinib is so ttractive. However, Dr. Cortes said, “Although all tyrosine kinase nhibitors are very safe compared with most other chemotherapies, here can still be adverse events, and doctors should explain and iscuss possible side effects with patients.” The primary side effect ssociated with bosutinib is diarrhea, which can occur in up to 80% of atients. However, this is usually minor and manageable. Although bosutinib is superior to many other possible treatments for ML, it is not effective for all patients. For example, the T315I oint mutation that can occur in the BCR-ABL gene renders CML esistant to imatinib, bosutinib, and most other tyrosine kinase nhibitors. Ponatinib Ponatinib is a very potent tyrosine kinase inhibitor that was pecifically designed to treat the T315I point mutation while aintaining efficacy against all other known BCR-ABL permutations. lthough ponatinib has many of the same side effects as other tyrosine inase inhibitors, its ability to treat a previously intractable utation makes it very promising. Because it is very effective against 315I-mutated BCR-ABL and in patients who have not responded to ultiple other tyrosine kinase inhibitors, ponatinib was recently pproved as a second-line treatment for CML patients. New first-line
Re: [CMLHope] Re: CML Newbie
These drugs will hurt your tummy. Take them with food and watch your liver tests. Sent from my iPhone On Mar 10, 2013, at 6:56 PM, Richard H richard1huff...@comcast.net wrote: All suggestions all all tried and proven aids. However, I take 325mg asprin daily for a blood thinner, Statin drugs, and Advil for the aches and pain. tylenol is a big no'no. I was diagnosed in 2003 and spent 5 years on gleveec. Statin drugs, tylenol, and gleevec put stress on the liver, so need to be monitored closely. Richard H. On Saturday, March 9, 2013 3:17:22 PM UTC-6, myli...@yahoo.ca wrote: Hi there, I was just diagnosed with CML in Oct 2012. Was put on hydroxyurea initially, but am now on Gleevec. My white counts are now at the low end of normal (4.8), but my platelets remain high. Anyone else experience this? Is this normal with CML? Also have been experiencing excruciating pain in my shin boneshave tried hot baths, A535, heating pad etc but nothing seems to relieve it. Anybody found anything that helps with the pain? I've been told not to take tylenol, aspirin or advil as they interact with the Gleevec. -- -- [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] Re: Thankyou
Hi Jeanie, I would like to shake your son's hand for insisting that you go see a doctor when you started having all of those problems. Sometimes we just don't want to believe that something may be wrong with us and we just procrastinate. Your not the only one because when I first knew something was wrong I did the same. Not wanting to go get checked out. By the way, you mentioned that your WBC and platelets were in the millions when you were first checked out. I don't think that your WBC was in the millions but rather in the hundreds of thousands. Your platelets on the other hand were probably in the millions. Was your spleen enlarged or did you have any pain from your spleen? Once someone learns that they have CML or any other cancer then their life does change forever. It is what we choose to do with out lives that really matters. From what I can see about you is that your handling this very well, and I applaud you for trying to help others. 18's Jeanie, Marty On Wed, Mar 13, 2013 at 4:31 PM, icandoall...@aol.com wrote: ** Hi all, Just to keep the newbies updated as to what to expect on Gleevec and other Meds. I started was dx in Jan 2004 after flying home from a trip. I was so tired I couldn't hardly put one foot in front of the other, and as walking is my daily exercise, I started to complain to my son. He said for me to go to the doctor; well I didn't want to but went to my PCD and he insisted, even though I said I really didn't need it. I had never had much sickness in my life, and really didn't think it was anything serious. I had noticed a rapid heart beat and could feel my heart beating after exertion for while at rest for a while, but was trying to ignore it. The next day my PCD calls and tells me my WBC and platelets are in the millions; he had already gotten me a doctor's appointment with a local oncologist for the evening. I still didn't want to go, but my son insisted. From that first doctor's appointment to now, my life was changed forever. At that time my oncologist had a blood lab in his office so he took a blood sample, and without any further testing, he told me he had good news and bad news. The bad news was that I probably had leukemia; the good news was that they had put a drug called Gleevec on the market, and that it would probably save my life. As I said, my platelets and WBC were in the millions. He immediately put me in the hospital as he said I could have a stroke from the high platelets. I was hooked up to a blood cleaning machine, and had my blood cleaned for 4 days straight, however it didn't do much good. They were giving me huge doses of Hydroxyurea along with a few other drugs. As I had never taken many pills, I ask the nurse what they were and the side effect. She didn't know but went to look it up. It seems the pills were huge to me and there were a lot of them. In the meantime I had to get the Gleevec okd by my insurance and there was a $2000 copay. more later-- Blessings Jeanie3 2004 dx put on Hydroxurea and Gleevec 2008 Sept put on Tasigna 2008-9 Put on Sprycel In a message dated 3/10/2013 9:17:11 P.M. Eastern Daylight Time, mylis...@yahoo.ca writes: Thanks Pat - I appreciate it *From:* Pat pfemail...@gmail.com *To:* CMLHope cmlhope@googlegroups.com *Sent:* Sunday, March 10, 2013 9:00:12 PM *Subject:* [CMLHope] Re: Thankyou Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is http://cmlsociety.org/ and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, mylis...@yahoo.ca wrote: Hi there, I want to thank everyone for all the kind responses and helpful suggestions. I can't tell you how much it means to hear that there is a light at the end of the tunnel, I just need to be patient to get there. I will absolutely try the dial soap trick and the tonic water to help with the cramps. For cramps through the day, would it work to carry it in my pocket? Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live in Markham, Ontario, Canada. I am so glad I found this group...I don't know anyone else with CML and my onc is not open to a lot of questions and has told me not to research CML on the internet. Think he's trying to keep me from getting scared. So it means a lot to hear from all of you. It's reassuring to know that what I am going through is part of the experience and not some new added problem. Have to say, this has been a frightening experience but things are beginning to look up, with white cells normal now. I just had cytogenetic testing done last Tuesday and should have the results back from that by the end of March. In the meantime, in speaking to the onc about the bone pain, he thought I should try one week at 200mg, and then try 300mg to see if I tolerate that better. I sure hope so - one of the reasons I
