7 replies to this topic

[scuba]

Well I've been back on Gleevec for two weeks now at 300 mg.  after having been off Gleevec for 3 weeks.  It seems my blood counts are normalizing:

WBC is back up to 6.1 and most importantly, my ANC is 2.61 - with Neutrophils once again at 43% of the blood.

Platelets have dropped back from 800 to 530 currently.

I have a bone marrow bioposy scheduled next month at M.D. Anderson (Cortes) along with PCR/FISH for my six month check.   It will be at that time when I learn if 300 mg. is working sufficiently to keep leukemic counts dropping.

I have no idea what the leukemia is doing.  Before I at least knew that my counts were dropping quickly along with myelosuppression.  Now it's anyone's guess.  I wanted to go back up to 400 mg.  but my primary onc. disagreed.  He said that the bounce back was expected and that he expects a little myelosuppression to resume in a few weeks time.  He said he wouldn't be surprised if my WBC's/ANC falls back some two weeks from now as the 300 mg. takes hold.  He believes that 300 might be my right doseage to keep leukemia dropping while having less affect on the good cell production.

Any thoughts?  Part of me wants to increase my doseage back to 400mg. - seems like I have WBC room to spare.

There is a chance - according to my Onc. - that my normal cell production is what jump started after gleevec removal and not leukemic production.  He said that will be a good thing and we will confirm next month.

[CallMeLucky]

I recall you saying at some point that your side effects weren't too bad at 400mg, but I'm curious how are your side effects at 300mg?.  You have an interesting perspective as you were on 400, came off so you were able to recognize the difference between being on and off, and now you are back on at a lower dosage.  Does it feel the same as 400?

As for thoughts on 400 vs 300, I say wait and see.  It is only a month or so, even if it feels like forever.  If they were saying stay at 300 for a year and then see how it looks, I might be more hesitant, but if they want to wait another month and see, that seems reasonable.  300 might be enough for you and if it is not, it's not much below where you need to be so the likelihood that the leukemia is going to progress in a significant way seems unlikely.  You still have a decent amount of TKI in your system.  Just be sure you are taking each and every pill.

[scuba]

There is a very noticeable difference between 300 and 400 mg. Gleevec.  With 400 mg. I had to be careful on eating a larger breakfast and a glass of water or orange juice to avoid any nausea feeling.  After a time, I had a rythem down that worked .  I had to keep coffee away for about an hour.

On 300 mg. I can eat a small yogurt cup and that's it and not feel anything.  And I can drink my 1-2 cups of coffee whenever I want.  Also - on 400 mg. sometimes - not all - but sometimes I would get Gleevec "fog" about 1-2 hours after taking.  On 300 mg. - not a hint.

Of course - I don't know yet if the lower dose is working - but my Oncologist suspects that it is given my earlier myelosuppression and PCR/FIsh response at 400 mg.  I'll know more next month when I have my six month BMB.  He expects I'll get some myelosuppression, but not in the danger zone so I can stay on Gleevec.  I asked about going back up to 400 - and he said no need now - best to wait the month to see the results.

Trey may weigh in here - but I am pleased that my platelets are dropping while my ANC and WBC increased back to normal which indicates to me that the Gleevec is working (otherwise I would expect my platelets to keep rising?).  I'll know more in two weeks at the next CBC to learn if the blood counts are holding in the normal range.

[Trey]

The blood counts show a positive trend, although they are not very useful overall.  300mg is not normally a good dosage for the first year (roughly speaking).  It may be enough to bring the leukemic counts down slowly, but it may take quite a long while to get to where you want to be.  Your PCRs were dropping previously, but not falling all that quickly.  I would want to get back to 400mg as soon as practical given your history so far.

[scuba]

I tend to agree - my thinking is to continue like this until BMB next month and then switch to either Sprycel or Tasigna.

[Tedsey]

Michael,

I find it interesting your doctor told you when your myelosuppression will ease up.  If he is right on target with you, send me his name, number and office address.  I will call and beg him to be my doctor (sorry for the sarcasm).  My myelosuppression started practically as soon as I started Gleevec (had to be on a break the first month).  It persists on Sprycel.  I have been diagnosed for 11 months.  Only my last onc tried to play Carnak, (the fortune teller Trey sometimes refers to---I think it is an old Johnny Carson skit).  My current onc will not promise anything.  Well, because she knows she cannot.

Since I have been living with severe myelosuppression, (not sure the grade, but it is probably 3 or 4--as with everything, it is a judgement call), I am no longer waiting to get past it.  I am just expecting to live with it.  I guess it beats the alternative (leukocytosis).  In and of itself myelosuppression is not certain doom.  Just uncomfortable.  We may be lucky and never contact anything our bodies cannot handle.

But I still wish your counts will normalize.  I am hangin' with ya.

Teds 

[scuba]

Hi Teds -

I don't think my Onc was predicting so much as relaying his experience.  He's seen the trend I followed.  And it took 4 months for the myelosuppression to set in. 

I don't recall - did you take any breaks and then resume on a reduced dose?

[Tedsey]

Michael,

I had one break my first month on Gleevec.  Then another about a month later.  First onc never talked about lowering dose when I was on G.  Second onc considered it, but after getting my PCRs back threw the idea out the window.  After three flat PCRs, she switched me to Sprycel.  The saga continues.

Hope all is well.

Teds