Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I have been reading some of your posts that show you have been on Gleevec for years. I was diagnosed in May of 2008 with a RBC of close to 300,000. I was put on 400mg of Gleevec which I tolerate pretty well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. I don't have the exact lab results, but it was explained to my husband and me that when I was first diagnosed, that they looked at 200 of my cells and 198 showed the Philadephia cells. From my December bone marrow biospy out of 200 cells, 40 showed the Philadephia cells and that I have to have another biopsy in June. I was told that if my cells arent under 20, that the Gleevec is considered a failure and that I should look at other medications? This seems odd to me. My regular blood counts look good every time. Any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi, These results look like FISH results to me. Normally when they do bone marrow biopsies, they will do a cytogenetic test that looks at 20 cells. If you can, try to get the results of the cytogenetic test since that is the one that is considered the " gold standard " . Many doctors will want you to have a Complete Cytogenetic Response (CCR) which is 0% Ph+ within 12 months so it's not odd that your doctor would recommend another drug if you haven't achieved this milestone in a year. The thing is though, the only way you can confirm a CCR is with a cytogenetic test. A FISH test will give you a good idea of what's going on but it's not the definitive answer. By the way, your regular blood counts have very little to do with your disease status. You could be 100% Philadelphia chromosome positive but have a perfect white count. This is why we need regular PCR testing or in the case of someone who hasn't yet achieved a CCR, regular biopsies, to monitor the disease status. Hope that helps, Tracey > > I have been reading some of your posts that show you have been on > Gleevec for years. I was diagnosed in May of 2008 with a RBC of close > to 300,000. I was put on 400mg of Gleevec which I tolerate pretty > well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. > I don't have the exact lab results, but it was explained to my husband > and me that when I was first diagnosed, that they looked at 200 of my > cells and 198 showed the Philadephia cells. From my December bone > marrow biospy out of 200 cells, 40 showed the Philadephia cells and > that I have to have another biopsy in June. I was told that if my cells > arent under 20, that the Gleevec is considered a failure and that I > should look at other medications? This seems odd to me. My regular > blood counts look good every time. Any ideas? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi, From your results it looks like you are a slow responder. The experts like to see you achieve CCR by 12 months. From your testing, it appears that you have had 2 FISH tests done. A FISH test looks at 200 cells. You are considered to be in CCR via a FISH test if the rests show less than 5-8 of the Philadelphia chromosome. You should have had cytogenic results from the bone marrow tests. This test looks at 20 cells and you need to be 0/20 cells to be at CCR. When you achieve this level, you get a number in the Zero Club. It also makes sense to have a PCR test done every 3 months and even some mutation testing if you don't get to CCR by 12 months. If you are getting a sub-optimal response on Gleevec at 400 mg then there are several things that can be done. One of those is to increase the dose of Gleevec. Where are you located? You might want to consider seeing a CML specialist for another opinion on your treatment. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of llomsdalen Sent: January 10, 2009 4:09 PM Subject: [ ] Gleevec I have been reading some of your posts that show you have been on Gleevec for years. I was diagnosed in May of 2008 with a RBC of close to 300,000. I was put on 400mg of Gleevec which I tolerate pretty well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. I don't have the exact lab results, but it was explained to my husband and me that when I was first diagnosed, that they looked at 200 of my cells and 198 showed the Philadephia cells. From my December bone marrow biospy out of 200 cells, 40 showed the Philadephia cells and that I have to have another biopsy in June. I was told that if my cells arent under 20, that the Gleevec is considered a failure and that I should look at other medications? This seems odd to me. My regular blood counts look good every time. Any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Thank you and everyone for your help with this. I am trying to learn and educate myself with this disease and find myself on an emotional roller coaster at times(especially during my menstrual cycle). I am so glad I can come to this group and see other people going through the same things that I am. I consider myself to be a strong person, and I try not to let my kids see me with my weak moments. I have 3 kids ages 20, 17, and 12 and I want them to live as normal a life as possible without always worrying about me.. My husband worries more than I do about my disease, so consequently, we don't talk much about cml, and try to live a normal life. Sometimes I just get so scared and think about everything I would miss out on if all drugs fail me, and if I don't have a match if I have to have a transplant. At the moment, my husband and I are out of work and have financial worries, but I am thankful that Novartis is supplying me with Gleevec. If I have to swich drugs, I only hope the next pharmaceutical company will help too. I have another appointment next week, so I will ask my doctor which tests were performed, and if I can have a copy of my tests. I live about an hour from Seattle, and my oncologist consults with Doctors at Seattle Cancer Alliance Hospital. Thanks again. ________________________________ From: Tracey <traceyincanada@...> Sent: Saturday, January 10, 2009 8:34:55 PM Subject: [ ] Re: Gleevec Hi, These results look like FISH results to me. Normally when they do bone marrow biopsies, they will do a cytogenetic test that looks at 20 cells. If you can, try to get the results of the cytogenetic test since that is the one that is considered the " gold standard " . Many doctors will want you to have a Complete Cytogenetic Response (CCR) which is 0% Ph+ within 12 months so it's not odd that your doctor would recommend another drug if you haven't achieved this milestone in a year. The thing is though, the only way you can confirm a CCR is with a cytogenetic test. A FISH test will give you a good idea of what's going on but it's not the definitive answer. By the way, your regular blood counts have very little to do with your disease status. You could be 100% Philadelphia chromosome positive but have a perfect white count. This is why we need regular PCR testing or in the case of someone who hasn't yet achieved a CCR, regular biopsies, to monitor the disease status. Hope that helps, Tracey > > I have been reading some of your posts that show you have been on > Gleevec for years. I was diagnosed in May of 2008 with a RBC of close > to 300,000. I was put on 400mg of Gleevec which I tolerate pretty > well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. > I don't have the exact lab results, but it was explained to my husband > and me that when I was first diagnosed, that they looked at 200 of my > cells and 198 showed the Philadephia cells. From my December bone > marrow biospy out of 200 cells, 40 showed the Philadephia cells and > that I have to have another biopsy in June. I was told that if my cells > arent under 20, that the Gleevec is considered a failure and that I > should look at other medications? This seems odd to me. My regular > blood counts look good every time. Any ideas? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 , It's great that you're keeping your kids from worrying as much as possible (the more they see you just going about your business, the less they'll worry). But it's also important that YOU have someplace you can go to speak openly and honestly about your own worries. This group is a godsend in that regard. LLS also has face-to-face support group meetings, and they are terrific! it's just such a relief to sit around with other people with this illness, not have to worry about upsetting anyone -- to gripe about the things that get you down. It's amazing how much you all find yourselves laughing! I have family up your way. Whereabouts in Washington do you live? in San Francisco From: llomsdalen@... Date: Sun, 11 Jan 2009 10:36:04 -0800 Subject: Re: [ ] Re: Gleevec Thank you and everyone for your help with this. I am trying to learn and educate myself with this disease and find myself on an emotional roller coaster at times(especially during my menstrual cycle). I am so glad I can come to this group and see other people going through the same things that I am. I consider myself to be a strong person, and I try not to let my kids see me with my weak moments. I have 3 kids ages 20, 17, and 12 and I want them to live as normal a life as possible without always worrying about me.. My husband worries more than I do about my disease, so consequently, we don't talk much about cml, and try to live a normal life. Sometimes I just get so scared and think about everything I would miss out on if all drugs fail me, and if I don't have a match if I have to have a transplant. At the moment, my husband and I are out of work and have financial worries, but I am thankful that Novartis is supplying me with Gleevec. If I have to swich drugs, I only hope the next pharmaceutical company will help too. I have another appointment next week, so I will ask my doctor which tests were performed, and if I can have a copy of my tests. I live about an hour from Seattle, and my oncologist consults with Doctors at Seattle Cancer Alliance Hospital. Thanks again. ________________________________ From: Tracey <traceyincanada@...> Sent: Saturday, January 10, 2009 8:34:55 PM Subject: [ ] Re: Gleevec Hi, These results look like FISH results to me. Normally when they do bone marrow biopsies, they will do a cytogenetic test that looks at 20 cells. If you can, try to get the results of the cytogenetic test since that is the one that is considered the " gold standard " . Many doctors will want you to have a Complete Cytogenetic Response (CCR) which is 0% Ph+ within 12 months so it's not odd that your doctor would recommend another drug if you haven't achieved this milestone in a year. The thing is though, the only way you can confirm a CCR is with a cytogenetic test. A FISH test will give you a good idea of what's going on but it's not the definitive answer. By the way, your regular blood counts have very little to do with your disease status. You could be 100% Philadelphia chromosome positive but have a perfect white count. This is why we need regular PCR testing or in the case of someone who hasn't yet achieved a CCR, regular biopsies, to monitor the disease status. Hope that helps, Tracey > > I have been reading some of your posts that show you have been on > Gleevec for years. I was diagnosed in May of 2008 with a RBC of close > to 300,000. I was put on 400mg of Gleevec which I tolerate pretty > well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. > I don't have the exact lab results, but it was explained to my husband > and me that when I was first diagnosed, that they looked at 200 of my > cells and 198 showed the Philadephia cells. From my December bone > marrow biospy out of 200 cells, 40 showed the Philadephia cells and > that I have to have another biopsy in June. I was told that if my cells > arent under 20, that the Gleevec is considered a failure and that I > should look at other medications? This seems odd to me. My regular > blood counts look good every time. Any ideas? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Pam-- Try not to worry--each one of us is different. In general, the drug is an easy one to take. It has some side-effects that are pretty common to most of us--fatigue (in my case it has gotten progressively less with time), diarrhea, some bone pain, skin roughness or rash, etc. It can vary from one person to another. I am taking 600 mg per day and have been on Gleevec for 2+ years now. At first I was sick and exhausted every day to the point where I was off work for 10 months. Now I am working full-time again. I don't have huge amounts of energy, but enough to do what I need to do with my husband's help. My best tips are: Always take Gleevec with some food, preferably your largest meal of the day. Take Imodium for diarrhea problems--you may have to take up to 3 tabs of imodium at a time. It is a tightrope--you just fine tune the imodium to how much diarrhea you are having. If you feel nauseated, eat a little fresh pineapple or drink some ice cold pineapple juice--that is my favorite remedy. Or sip peppermint tea. Or eat a little candied ginger. Take a nap if you feel tired--say no when you are too exhausted to do things. Ask for help from others--they are glad to give it and it really helps. Be good to yourself and stay in touch with this group. It really helps! God bless, Vicki > > I need some input regarding Gleevec. Just dx with CML 2 weeks ago. > Waiting for Gleeved to arrive via mail order pharm. Just don't know > what to expect. Realizing that everyone is different it's scary enough > just knowing you have CML. I would like to hear positive and negative > effects of taking this drug. > Pam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 > > > > I need some input regarding Gleevec. Just dx with CML 2 weeks ago. > > Waiting for Gleeved to arrive via mail order pharm. Just don't know > > what to expect. Realizing that everyone is different it's scary > enough > > just knowing you have CML. I would like to hear positive and > negative > > effects of taking this drug. > > Pam > > > Hi Pam: First of all welcome to the group. You can talk to us anytime, and we are all ready to give you some support. I also get my Gleevec by mail order. I do not know what Insurance you have, but mine is always on time. I have been on 400 mg. of Gleevec since 2000, and we are all different. After all these years, I still experience the fatigue. Eating the full meal with your pill is important. It avoids the nausea that some, not all people get. You might get some foot cramps, diarrhea, joint pain. You will find most of us just live with it. I can only speak for myself, but I adjusted and you learn ways to deal with it. I have not had any severe side effects. Hope to converse with you along the way. Suzzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 -- Hi Amy: A lot of people have had trouble paying for their Gleevec, and I do hope Patient Assistance helps you out. Most likely they will, but you also can fill out a financial statement with Novartis who makes Gleevec, and if you meet their criteria they will give you your Gleevec for nothing. You will have to check, due to the fact that your insurance does pay a portion. I hope you get it resolved so you can get back onto your medication. - In , " aimesc31 " <aimesc31@...> wrote: > > Hey everyone. I need some help. Recently I had to change insurance coverage, the new insurance does not pay much on my Gleevec. I can't afford to get it. I have applied for patient assistance, not sure I'll be approved. Any other suggestions. I have been out of medicaine for a little over 2 weeks. Thanks for any suggestions you might have. > > Amy B. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 I had the same problem. I found a company called PSI (Patient Services, Inc.) They are awesome!! I don't have the telephone number with me but I will get it and let you have it tomorrow!!! I had to complete an application, but it was a matter of days with an answer!!!!! YOU CANNOT NOT TAKE THIS MEDICINE!!!!!!! Blessings, Jo-Dee From: aimesc31 <aimesc31@...> Subject: [ ] Gleevec Date: Tuesday, September 15, 2009, 8:26 PM Hey everyone. I need some help. Recently I had to change insurance coverage, the new insurance does not pay much on my Gleevec. I can't afford to get it. I have applied for patient assistance, not sure I'll be approved. Any other suggestions. I have been out of medicaine for a little over 2 weeks. Thanks for any suggestions you might have. Amy B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Jo-Dee, I'm afraid I don't understand your comment about not taking the medicine. Is that what PSI told you? They have been paying for my Gleevec for years. Please say a little more about this. Troxel On Wed, Sep 16, 2009 at 6:37 AM, Jo-Dee McKibben <tuskarawaz64@...>wrote: > > > I had the same problem. I found a company called PSI (Patient Services, > Inc.) > > They are awesome!! I don't have the telephone number with me but I will > get it and let you have it tomorrow!!! > > I had to complete an application, but it was a matter of days with an > answer!!!!! > > YOU CANNOT NOT TAKE THIS MEDICINE!!!!!!! > > Blessings, > > Jo-Dee > > > > From: aimesc31 <aimesc31@... <aimesc31%40>> > Subject: [ ] Gleevec > <%40> > Date: Tuesday, September 15, 2009, 8:26 PM > > > > > Hey everyone. I need some help. Recently I had to change insurance > coverage, the new insurance does not pay much on my Gleevec. I can't afford > to get it. I have applied for patient assistance, not sure I'll be approved. > Any other suggestions. I have been out of medicaine for a little over 2 > weeks. Thanks for any suggestions you might have. > > Amy B. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 I just meant that her health depends on taking the medicine as prescribed. She shouldn't have to go without it!!!! PSI is an awesome organization!!! I have let me husband and kids know that someday 60 years from now when I am 105 and pass from old age, I want my obit to say contributions to PSI!!! Jo-Dee > > From: aimesc31 <aimesc31 (DOT) com <aimesc31%40. com>> > Subject: [ ] Gleevec > groups (DOT) com <%40groups .com> > Date: Tuesday, September 15, 2009, 8:26 PM > > > > > Hey everyone. I need some help. Recently I had to change insurance > coverage, the new insurance does not pay much on my Gleevec. I can't afford > to get it. I have applied for patient assistance, not sure I'll be approved. > Any other suggestions. I have been out of medicaine for a little over 2 > weeks. Thanks for any suggestions you might have. > > Amy B. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 I applied for PSI today. Hopefullly I will qualify. Thanks so much to everyone for your input! Love you all! On a more fun note! My son will be TWO in October. I just can't believe what a blessing I received in him. Not looking to have more kids, but sure glad he came along.. Amy B. > > I just meant that her health depends on taking the medicine as prescribed. She shouldn't have to go without it!!!! > > > PSI is an awesome organization!!! I have let me husband and kids know that someday 60 years from now when I am 105 and pass from old age, I want my obit to say contributions to PSI!!! > > Jo-Dee > > > > > > > > From: aimesc31 <aimesc31 (DOT) com <aimesc31%40. com>> > > > Subject: [ ] Gleevec > > > groups (DOT) com <%40groups .com> > > > Date: Tuesday, September 15, 2009, 8:26 PM > > > > > > > > > > > > > > > Hey everyone. I need some help. Recently I had to change insurance > > > coverage, the new insurance does not pay much on my Gleevec. I can't afford > > > to get it. I have applied for patient assistance, not sure I'll be approved. > > > Any other suggestions. I have been out of medicaine for a little over 2 > > > weeks. Thanks for any suggestions you might have. > > > > > > Amy B. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.