6 replies to this topic

[noelani]

My husband was taken off Gleevec after 5 months because platelets were below 30,000. They have now gone, after nine weeks down to

13,000. Red blood cells have gone down enough that he had a transfusion.The doctor says that the only thing we can do is wait for the platelets to

go up. Then she will put him back on a lower dose of Gleevec. Has anyone had the experience of being off Gleevec for more

than a few weeks?

[ChrisC]

A few years ago, after I was dx'd, and after about six months on-and-off-&-doseage-ups-and-downs with Gleevec due to side effects (not low or high blood counts, just everything else), I was off G for four weeks (to see if that helped my body deal with the side effects). My blood work then showed raised WBC and PCR, so I went back on G 400mg for one week while waiting for my Sprycel order to arrive. (G's side effects returned immediately, so I knew it was working!)

What is the reasoning for your husband to return to Gleevec, rather than switch to Sprycel or Tasigna, since he has already shown that he is too affected in his blood counts on G?

[Susan61]

Hi:  I assume your husband is on something else like Hydrea, until the doctor can determine if your husband can take the Gleevec again.  He might have to switch to one of the other TKI drugs like Sprycel or Tasigna if he cannot tolerate the Gleevec.  I hope he gets back onto treatment again soon.  Please keep in touch to let us know how he is doing.

Susan

[valiantchong]

There are people that are taking Gleevec off, however their PCR and CBC monitoring is also critical....Wondering what is his PCR before off Gleevec,  Has he achieved CCR in 5 months ? There are people who switch to Tasigna or Nilotinib second generation TKIs...

[Trey]

That is a long time to be off drug therapy.  He should get back on the lower dosage soon, even if it requires platelet transfusions.

[noelani]

Thanks everyone for responding. The problem is he can not go back on any medication until platelets go back up.They are at 13,000. He had a transfusion but platelet transfusions are not very effective. His doctor is sure it's the effect, even after 10 weeks, of Gleevec. My main question is how do I find any doctor who

has dealt with a patient like this?  I do not want to get a second opinion by someone who, like our doctor, has no experience with what I am now finding is my husband's unique situation.

[Trey]

You are close to San Francisco, so Dr Neil Shah is at UCSF:

http://cancer.ucsf.e...e/shah_neil.php

He is one of the top tier CML Specialist Hem-Oncs.