Early on my platelet count fell below 100 and unless it changed I would have to go on a Gleevec holiday. I too was very worried; fortunately, my count went back up, so I didn't have to go off. However, I checked with the cmlhope group (groups.google.com) and found a number of knowledgeable members there. They told my that the current standard was not to go off Gleevec for a platelet issue unless your count fell below 50. I don't know what the current practice is for WBC, but you might join that group and ask them.

Thanks for the info - I will try that cmlhope group. I've read that the WBC should not drop below 2,000 however the WBC is broken into several separate counts and the one having to do with infection is the one they worry about. I'm not sure what that number should not fall below. My platelet count is good right now and so is my hemoglobin count. Hopefully being off the Gleevec doesn't make those number drop again. I'll check out the group to see if anyone has any info. Thanks again.

Check out http://www.cmlinfo.org and the section on low counts. You are also very welcome to join the worldwide Asian CML Support Group.

I can give you the number you are looking for. You stop Gleevec for fear of infections when the Absolute Neutrophil Count (ANC) goes below 1000. This is what CML expert doctors recommend. You calculate ANC by multiplying WBC with the neutrophil percent. Suppose your WBC is 2000 and neutrophil percent is 20%, then you multiply 2000 by 0.2 and your ANC will be 400 which is below 1000.

The neutrophils are infection fighting white blood cells and if they go too low, you can be in danger of getting infections. CML expert doctors say to stop Gleevec when ANC is below 1000 and platelet counts are below 50,000.

However, since too many Gleevec stoppages can affect remission, some doctors add white cell boosters called Neupogen which boosts up the white count allowing Gleevec continuation. Dr. Druker had a 2003 article on Practical Management of CML on Gleevec, I may still have the article and can pass it to you to show your doc. Write to my private email at anjana@pacific.net.sg

Hope this helps.

Best Wishes,
Anjana
wife of Royston
d/x Jan 2002
400mg Gleevec
PCRU

I have just been on Gleevec since middle of March 2009 and they took me off starting today. I am scared to death & hope they know what they are doing. I have a terrible rash so that is why they are taking me off even though my blood levels are good.My Dr. said he would never take me off but now they are? I guess there are some other drugs that they can try but I don't see the Dr. til July 8th. So I guess we're in the same boat, I am to knew to this & really don't know much. Best to you, Patti

Dear Patti,

My husband's doctor uses Prednisone which is a steroid to treat severe Gleevec rashes, it works well and I know other CMLers who have had their rashes disappear with steroids. Maybe your doctor is taking you off Gleevec until the rash goes away and then put you back on. There are new drugs like Sprycel and Tasigna which are backup drugs to Gleevec so do not worry.

Here is a portion from Dr. Druker's nurse, Carolyn Blasdel's teleconference on Gleevec side-effects. Hope this helps.

Best Wishes,
Anjana
wife of Royston
d/x Jan 2002
400mg Gleevec
PCRU

http://aoic.net/cancersyspagesnb/transcripts/lls/35/aawe.pdf

Skin Problems- There are some common Gleevec side-effects like
rash, dry skin, fragile skin that tears easily, changes in
pigmentation (skin gets lighter in color) and easy-to-sunburn skin.
In case of itchy rashes, hydrocortisone cream helps. If it is not
strong enough, prescription steroids such as triamcinolone cream can
be used. Claritin which is an oral antihistammine can also be used
as can Zyrtec and Benadryl.
Occasionally, someone gets a severe rash which requires oral steroids
and stopping Gleevec. It is then restarted while tapering the
steroids.

Thank you so much for all the help. I am going to call them & ask about some of these things to try.

Patti :)

Thanks for all the posts. Anjana...I printed Dr. Druckers article after locating it on the web. Lots of good information in that article and thanks for informing me about that. I was at the doc yesterday thinking I was going to have a bone marrow biopsy....office messed up on the scheduling so I'm having it done on Friday. They want to see if there are still leukemia cells in the marrow. One positive thing I found out yesterday...My count, after being off the Gleevec for 3 days went from 2,025 to 3,035. My ANC count is still good...I'm not in danger of infection. Once the bone marrow biopsy is done, the doc will have a better idea how he will treat me. Patti, I know the feeling..I'm scared to death about going off the Gleevec, because I know I have nothing blocking those leukemia cells. I'm trying to stay positive. This website, and the website (groups.google.com) are good....alot of good information can be gotten from others in the same boat. Take care.

Thx for sharing your experience! Like specialk1957 and Patricia2009, I was scared when my dr took me off G after just 3 weeks because all my blood counts had dropped below normal and the ANC was 700. After two weeks my WBC went up to 3500. Evidently, according to my dr, while anemia is not uncommon with Gleevec, this drop in WBC effects around 10% of G patients. He plans to get me back on at the full 400mg dosage. Does anyone know how long G stays active in the system after stopping the daily dosage? Hugs to all of you dealing with CML. And, special thx to Anjana for your website and information!

I was off Gleevec for 3 weeks, then was put on 200 mgs and now back on 400 mgs. My WBC went up from 2,000 to 5,250 in the time I was on nothing and 200 mgs. However, after being on 400 mgs, it started to go back down. I'm at 4,900 right now, but this Thursday, I'm headed for a 2nd opinion on this. I'm just very worried about the "what ifs". I'm not sure how good it is to be going on and off Gleevec. I also had another bone marrow biopsy done in the time I was off the Gleevec and while the cancer cells decreased alot, there were still cancer cells in the marrow. This is driving me crazy...hopefully the 2nd opinion doc will have some answers.

Karen, good luck with the second opinion. I have decided to get one too and it is scheduled for October. Please keep us posted on your progress. Hugs, Marie

Hi: everyone I am a new CML patient, I just start my gleevec a month, lot of thing I don't understand,First my WBC is low than 450 now, my dr. want to see me another week. I was also wondering some data, before my dr. give me gleevec, she did some blood test which she called baseline data, the BCR-ABL1 is 243%,but I remember I had a blood test before the I just found my wbc was high (17), the BCR-ABL was 2.34%,(one month ago) is anybody know what is different, I asked my Dr. she seemed could tell me clearly. thank you very much

When my son was diagnosed with CML 1st thing I did was look for doctors in our area who have experience with CML. Luckily the dr. who was already treating my son had been part of a research team directly related to CML and Gleevec. One thing he stressed from the very beginning was not to miss any dosages. Once taking Gleevec and if you are off for any amount of time CML has the tendency to build a resistance to the Gleevec. For those of you who haven't had 2nd opinions please do!!!!!

Dear specialk1957, I'd like to know what your second opinion doc said about going off gleevec. Earlier studies said it ran the risk of building resistance to the drug. Many patients are reporting that their drs are temporarily taking them off gleevec for one reason or another now, so maybe the protocol has changed on this. How are you doing now? Haven't heard from you for a month. Sending good wishes to you and all our cml group members!

Hi cmlsam3, My second opinion doc took me off Gleevec because my bone marrow biopsy showed no change in the # of cancer cells within each chromosone group. I believe the chromosone's are broken down into groups of 20 and in each group, 20 of the cells were cancer cells. I just got my bloodwork after being off the Sprycel for 3 full days. My platelets went up to 29,000, my hemoglobin went up to 11.9, but my WBC is 2.18 and my neutrophils dropped to 740, which is under the 1,000 they want them at. It's just never ending for me right now. I need to have a major discussion with my doc on Friday. I just don't know the answer. I'm frustrated right now...I read where people have been on Gleevec for years and years and their blood counts are stable. I was concerned about going off Gleevec...worried that it would affect the bone marrow, but my 2nd opinion doc said there are no studies that support that. Thanks for responding to this posting. I hope things work out for you too!