Guest guest Posted July 16, 2009 Report Share Posted July 16, 2009 I went today to have my wbc checked and it is UP again!!!! I am soooo frustated! When I fell last week and went to the ER, they checked it then and it was 28,000. That is the lowest it has been since I was dx with CML and I was excited. I thought, finally, it's working for me. Well today it is back up to 44,000. I just don't know what I'm doing wrong and it just really frustrates me. The Dr checked my Gleevec level today to see if my body is absorbing it. I go back on the 27th and he plans to switch me to Tasigna then. My question is: if the Gleevec is not working and Tasigna is in the same group of meds, then what makes him think the Tasigna will work? I was dx in February and have not been in remission yet!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 Zavie/All First I'd like to thank you for the articles. Learning more about this disease is both scary and empowering. I've been on the increased dosage of Gleevec from the 400mg I took for a year, and am now currently taking 600mg. I feel like I did in the beginning week with Gleevec. My whole body feels like it's humming or vibrating. I'm more tired, and feel cold all over. It's been in the 90's here in Bellingham, so I've had no problem going outside to get warm. My Oncologists want to wait 6 weeks to do a PCR test to see if this increase is helping or not. I'm trying not to worry too much, but it's hard not to. How do you all remain calm when one drug fails you? God Bless, ________________________________ From: Zavie <zmiller@...> Lomsdalen <llomsdalen@...> Sent: Saturday, July 25, 2009 10:02:28 AM Subject: RE: [ ] Up and down!!!!!!!!!!! Hi ,  I’m not positive, but my guess is that you will need a BMB to check the mutations.  Most patients don’t go the route of transplants any more. The big problem is the mortality rate. Less than 50% of transplant patients are alive after 5 years. For my money, it should only be considered as a last resort. It was done in the early days when there was no other treatment available.  CML can be very scary. Also, knowing too much is also scary. It is often said by all the experts, if you were destined to get cancer, then CML would be the best one to get. Today, nobody dies from CML. 15-20 years ago it was a death sentence.  Look at this article  http://www.cdhb.govt.nz/chlabs/miscdocuments/CML_Monitoring_Guidelines_Jul%20200\ 7.pdf  This is why you need a CML expert treating you. In your case, the Gleevec dose would have already been increased. Because they waited so long, you might as well have the mutation testing just to be sure. Only a CML expert is in the best position to decide what to do.  Here is another one  http://www.cmlsource.com/managing_cml.php?lang=1  Note that the Canadian recommendation says that you should achieve CCR after 18 months, not 12 months.  In your case, I would seriously consider switching to Tasigna instead of Sprycel. Both drugs appear to be better than Gleevec. I say better because they both get you into remission faster than Gleevec. But over time, Gleevec achieves the same results, but takes longer.  I saw a presentation on Tasigna by Dr. Talpaz recently and it is clearly better than Gleevec. The only thing that they don’t know is how well it does over time.  The problem I have with Sprycel is one of the side effects is pleural effusion. This can be life threatening.  I know this is a lot of stuff to digest, but what I am really saying is that you are going to be fine.. Off to a slow start maybe, but in the end you will catch up and be fine.  Zavie  Zavie (age 71) 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 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie  ________________________________ From: Lomsdalen [mailto:llomsdalen@...] Sent: July 25, 2009 10:52 AM Zavie Subject: Re: [ ] Up and down!!!!!!!!!!!  Thank you Zavie.  I will ask my oncologist to perform the test for mutations. Is this a blood test taken from my arm, or do they need my bone marrow to find this out?  I'm sure alot of people have run into this same problem, and I know I have options, but every little bump in the road really scares me!  Even with the other two options besides Gleevec, do many others go ahead and put their names on the Bone marrow registry ahead of time?  Thank you,  ________________________________ From:Zavie <zmiller@...> Lomsdalen <llomsdalen@...> Sent: Friday, July 24, 2009 4:38:56 PM Subject: RE: [ ] Up and down!!!!!!!!!!! Hi ,  Just to let you know that this is a great plan. The simple solution is to increase the dose and it might even be the correct one. I would want the experts to do eliminate that it might be a mutation. If it is a mutation, then you would want to switch to the appropriate drug that is effective against it.It may even be Sprycel.  Hang in there,  Zavie  Zavie (age 71) 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 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie  ________________________________ From: [mailto: ] On Behalf Of Lomsdalen Sent: July 24, 2009 3:08 PM Subject: Re: [ ] Up and down!!!!!!!!!!!   Hi everyone. I was diagnosed in May '08 and at the time, I remember my FISH(sp?) test results showing all 200/200 being positive for Philadelphia chromosome cells. After my BMB and BMA in December, they decreased to 20cells out of the 200 cells tested. I had another BMA and BMB done a couple of weeks ago, and now my cells show 42/200 for the Philadelphia cells. Not good news. I am currently waiting for the CML specialists at Seattle to decide the next step for me to take. From the beginning I have been taking 400mg of Gleevec, and my Oncologist in town has told me to increase it to 600mg. until he is told by the Doctors in Seattle what to do. I tolerate Gleevec well, and wonder if any of you have similar stories or any advice, especially if the Doctors want to change me to Sprycel instead of trying an increase in my Gleevec.. All advice is greatly appreciated, ____________ _________ _________ __ From: Zavie <zmillersympatico (DOT) ca> groups (DOT) com Sent: Thursday, July 16, 2009 8:38:36 PM Subject: RE: [ ] Up and down!!!!!!!! !!!  Hi , One thing that you want to do is get a copy of all your test results. You don't have to be a rocket scientist to understand them. By just comparing two sets of results you can easily see if you are improving, remaining stable or getting worse. As far as the acronyms are concerned, you can always look them up. The better way is to ask on this list and someone will explain them to you. OK - CCR means Complete Cytogenic Response. This happens when they do a BMB or BMA and the results are 0/20. No evidence of the CML. Now watch what happened. In order to explain what CCR meant, I had to introduce two new acronyms. Now I have to define them. BMB stands for Bone Marrow Biopsy and BMA stands for Bone Marrow Aspiration. These are the tests they do when they sick that huge horse needle into your hip and haul out some marrow for testing. So . what is the difference between a BMA and a BMB? Both tests take out some marrow but the BMB test also takes out a piece of bone. (It doesn't really but then we start to get technical again). Enough she screams!!! But I haven't told you what MMR is yet. Now I have to be very careful and try to explain it in a simple way.. This is difficult because to do it right I have to bring in things like PCR test and you really don't want to know what PCR stands for. MMR means Major Molecular Response. This is a perfect place to be with your CML. Once you achieve this level of remission there is virtually no chance that you will ever relapse with your CML. Now to confuse you a lot more, if you have achieved MMR it means that you have at least a 3 log reduction with your CML. I mention this because you will come across the term 3 log reduction. Simply, it means you are in MMR. To explain what a 3 log reduction means, I will have to give you a course in mathematics. One thing that will help you is to bring along a tape recorder with you.. Oops . they are now called digital recorders. Record the meeting and then you won't miss anything or misunderstand what he said. Good luck and report back after your meeting. Zavie Zavie (age 71) 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 3.7 log reduction Jan/09 3..8 log reduction May/09 e-mail: zmillersympatico (DOT) ca Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: groups (DOT) com [mailto:] On Behalf Of Sent: July 16, 2009 10:30 PM groups (DOT) com Subject: Re: [ ] Up and down!!!!!!!! !!! Hi Bobby and thanks so much for the info. I was just going by what my dingbat Dr told me in SC....he said I should be in remission within 6 mths. I am not sure if the Dr I am seeing right now is a CML specialist or not. The Dr I saw while I was in the hospital was and I really liked him. The one I see now is his partner but they work in different offices and towns. I'm not sure what CCR and MMR is. I get all confused on all of the abbreviations and the meanings of everything. I guess I just maybe misunderstood the Dr. I was just expecting to be in remission by now and it's not happening but I won't expect that for quite some time now since you told me all this. I WILL be having a long talk with my Dr on the 27th and hope he can tell me why, what, when, where and how cause I am surely taking me a book with a ton of questions for him and I won't leave until I get some answers!!! BLessings, WEndy From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929% 40gmail.com> com> Subject: Re: [ ] Up and down!!!!!!!! !!! groups (DOT) <mailto:% 40groups. com> com Date: Thursday, July 16, 2009, 12:38 PM Hi , I think you are quite right to be upset about the rising wbc, and perhaps your dr. should have you on hydroxyurea to help reduce it. But, I think you are a bit hasty in expecting to be in remission only 6 mos.. after being dx. Hematological remission, yes, that could happen that soon if Gleevec is working for you. I never reached cytogenetic remission for 10 years! I was dx in 95, went through 3 trials , first Gleevec, then two combining Gleevec, and still did not reach ccr. Sprycel is what put me in CCR and not until I had been on it for 10 months. I'm in the Ariad trial now, still hoping for the magic pill that will put me in MMR, after 14 yrs.! You certainly could be one of those that Gleevec is not working for, and that is the miracle of todays drugs. There is Sprycel and Tasigna to fall back on. Believe me, as much as we all want to be in remission, it is really to soon for you to be upset because you have not achieved it yet. Sometimes drugs don't all work for everyone, and there certainly is the possibility of Sprycel or Tasigna working for you. Gleevec didn't work for me, but Sprycel did, I don't know why, maybe because some of us are more resistant to one drug over another. Do you go to a CML expert? Please don't get so frustrated, we are all so different and what works for one will not work for another. Goodness, I am in my 6th trial trying to get one to put me in molecular remission and keep me there, but have never attained that yet, only CCR, but I'm happy with CCR, it's sure better than nothing. Hang in there, your dr. will get you on one of them and hopefully you will see better results, but please don't rush it, today is a good time for all CML'ers, lots of good things happening in the research department. Take care, Bobby On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54 <wendyphillips54>wrote: > > > I went today to have my wbc checked and it is UP again!!!! I am soooo > frustated! When I fell last week and went to the ER, they checked it then > and it was 28,000. That is the lowest it has been since I was dx with CML > and I was excited. I thought, finally, it's working for me. Well today it is > back up to 44,000. I just don't know what I'm doing wrong and it just really > frustrates me. The Dr checked my Gleevec level today to see if my body is > absorbing it. I go back on the 27th and he plans to switch me to Tasigna > then. My question is: if the Gleevec is not working and Tasigna is in the > same group of meds, then what makes him think the Tasigna will work? I was > dx in February and have not been in remission yet!!!!!!! > > > > -- a Doyle/dob 1929 DX /CML/1995/Interfero n/hydrea 2/00 - Gleevec Trial, OHSU, Dr. Druker 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " 7/04 - Sprycel Trial, MDACC, Dr. Talpaz 3/05 - CCR 12/07 - Ended trial due to Pleural Effusion 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz #840 Zavie's Zero Club #840 Quote Link to comment Share on other sites More sharing options...
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