13 replies to this topic

[cpsn0000]

How many times can Gleevec be stopped and started before it becomes ineffective? I am on my 2nd time with Gleevec being stopped because of low WBC and PLT counts. I hear that Tasigna and Sprycel are easier on your blood counts especially if you tolerated Gleevec well overall with the exception of the blood counts. Any responses on this will be greatly appreciated. Also meeting with a hematologist cml specialist on thursday so I am excited about that. My current onc specializes in breast cancer and her partner does have some expierence with lukemia but not as much as a cml specialist would.

[cpsn0000]

Was also told can move me down to 300mg once my blood counts rebound here in a week which is the protocol according to the sheet on Gleevec that was given to me by the nurse of my onc. Thoughts on this?

[Trey]

There is no set number of Gleevec breaks allowable.  But if quite a few are required, it would be a good idea to try another drug.  The other drugs may help, but everyone is different.  It is a trial and error thing.

[cpsn0000]

My current WBC count went down to 2.3 and my GR# was 1.1 which was the cause to stop my Gleevec. My plt count went down to 16 back in Novemeber and had to get platletts put in and was off gleevec then for 2 weeks. My plt count this past week continued to drop again and would have continued to reach grade 3-4 again if I stayed on it. Do you know if Tasigna or Sprycel is better tolerated even though I have read they also can cause low white blood cell counts?

[Trey]

Your WBC and ANC are fine.  Your platelets are the only issue.  You could try Tasigna, or it may resolve itself over time.  It is a matter of choice.  I would likely switch drugs.

[cpsn0000]

Since sprycel spends less time in the body compared to tasigna, would it be better to use sprycel since it only spends 5 hours in the body and i get more of a break? The doctor I spoke with in texas said he would put me on tasigna since I have been having problems maintaing my WBC and PLT counts..Your thoughts?

[Trey]

There is no clear answer for everyone.  It is almost a "flip the coin" decision process.  But I would choose Tasigna for low platelet counts.

[cpsn0000]

With Tasigna, it should help not have so many problems with low blood counts is what you are saying?

[cpsn0000]

My current onc has not done a FISH or PCR test, says its too soon. I was diagnosed on 10-6-10 and started Gleevec on 10-8-10. Have had a total of 3 weeks off Gleevec come this Monday with having the two breaks back in November and this current week. They will draw my blood on this consulation appt and review my records, when they draw my blood, since you can do FISH and PCR with blood, can I tell the lab person to make sure they read FISH and PCR or is this something the cancer hospital would need to send out for?

[Trey]

Your Onc is not following correct procedure (NCCN CML Treatment Guidelines).  You should have been having a FISH starting from the diagnosis.  I assume you at least had a bone marrow biopsy (BMB)?

You need a FISH and/or PCR now.  Using blood is fine.  The lab just needs to collect it in a lavendar top tube (check the color when they take the blood sample).  They may either send it out or process it on site if it is a big hospital center.  The lab folks do not know why they collect the sample, they just do what they are told, so asking them questions is not very useful.

You have used up your quota.  Please insert another nickle to continue this session......

[cpsn0000]

I am trying to stink my coins into the computer but wont take it. I really do appreciate you taking the time with speaking with me. I know I am behind on hitting my 1st remission point which is the hematological remission and know I can get their really soon once I am on a medication I can fully tolerate (no more low blood counts). I am more upset at my current onc not going into this great of detail with me, I am so happy I can meet with this new onc on Thursday. If this doesn't work out, I also made an appt with one other hematologist who specializes in leukemia and cml on Jan 18th.

[cpsn0000]

and yes, the BMB was done while I was in the hospital on the 2nd day I was their.

[PhilB]

As you've run out of coins let me see if I can help.  I can't claim anything like Trey's level of knowledge, but I do work cheap!

If they did a BMB at diagnosis then the 'standard' protocol is not to do another peripheral FISH or PCR until 3 months after starting treatment so your onc's seem to be bang on the button there and I would certainly think twice before trying to sneak an extra test directly with the lab technicians.  Not only is it likely to destroy your relationship with your doctors, but it will probably cause problems with your insurance company too and some of these tests, especially the PCR, are not cheap if you end up having to pay for it yourself.  TKI treatment takes time to work at a cellular or molecular level and there is not much justification for testing any more frequently than quarterly for most people.

Regarding where you are now and hitting the first target of haemetological response, this is a tricky one, but not something to get hung up on at this stage.  Although we tend to talk about it in terms of getting counts within normal range, its significance is really about showing that the drugs are zapping the bad guys by getting counts down to normal levels from the original high numbers characteristic of the disease.  Where someone has significant myelosuppression it becomes a bit of a meaningless target, but you can definitely tick the box that says 'yes Glivec hammers my Ph+ cells' which is what it's really about.

Given that you are having problems with low counts then yes switching doctors to someone with more experience of CML may make sense, and yes switching drugs may be worth trying at this point too. Just saw your actual counts from your other thread and I probably wouldn't have stopped G so early second time around if it was me as the numbers were very much in CML-normal range and they may have bottomed out above the danger range anyway.  As to which drug you switch to if you do switch, you pays your money and you takes your choice.

[Trey]

NCCN Guidelines want both a BMB and either FISH or PCR at diagnosis.  And any time there is some type of issue, more testing is needed.  Standard testing guidelines apply when there are no "issues".  The need for the FISH now is due to being off TKI drugs for most of the past couple months because of low platelets.  So the Onc saying it is "too early for a FISH" is acting like there have not been any issues that require closer monitoring.