11 replies to this topic

[Johnc]

I currently take Gleevec

I was in an office visit with Onc for 3 month PCR and he wanted a 1 log reduction and I asked him if I did not get it what TKI would he put me on. He said Sprycell.

At the next visit he indicated that i did not get the one log reduction when the results came back and he said it is now time to switch meds. He wants me on Tasignia. I was very surprised and indicated to him in our  last conversation he said it would be Spyrcell.

Should I be concerned or like Trey  said in previous post it is like tossing up a coin?  I am a little concerned here of the inconsistency.

I have yet to have to be prodded by him except initial office visit but I was fully clothed. Is this normal or do folks have to get into a gown for appointments during their office visits or not?

Thoughts?

Johnc

[idahobeavers]

i dont know depends on your dr. i have seen a number of oncs and specialists. some touched me and others just shook my7 hand when we were done. i have never gotten undresed at any time. as for the med. maybe your onc decided on the tasigna instead of sprycel because of your counts. all of my oncs drug their feet before they put me on sprycel. i started with gleevec went to tasigna and now sprycel.all i can say is try the tasigna .the side effects might not be bad for yo. if so then go to sprycel

[Sneezy12]

What were all your bcr/abl values, and any Fish test results. Regards, Frank

[Johnc]

The value at diagnoses was 4.383 after 3 months it was 4.152 for a - 0.0235 reduction. A very slow start in my book.No fish was run and I questioned that and he wants to go the PCR route. I started with 258k WBC and 458 platelets and some myelocytes and blast cells which cleared up in a couple of weeks after I began Gleevcs.

Johnc

[TeddyB]

The Onc always tries to feel my spleen and lymph nodes (Neck, armpits, groin), i just take off my shirt.

Same with BMB, just took off my shirt.

[Happycat]

John,

You never know what might have happened to change his mind. He might have talked to a colleague about it, and got a recommendation to use tasigna. Or he might have had a drug sales rep in his office presenting him with new data or case studies.  Or he might have done some reading, etc.

Just try to find out how long you will give tasigna a try, and what level he wants you to get to by that time, in order to be assured tasigna is working for you. It works very similarly to gleevec. I think it hits the same binding pocket, just binds more strongly. Sprycel, otoh, binds differently I believe. It definitely also inhibits the SRC kinase pathway, too. So it has different activity compared to gleevec and tasigna.

When I see my onc, he just feels my spleen and liver. I don't disrobe, just push my waistband down a little so it is out of his way.

HTH,

Traci

[LivingWellWithCML]

FISH is more important at this stage, so that your cytogenetic response can be measured.  The shorter term goal is for 0% FISH (CCyR).

If you aren't having trouble with Gleevec side effects, then I might suggest getting a FISH test before considering switching TKIs.  That said, both Tasigna and Sprycel are very effective, so moving to one of those now isn't necessarily a bad decision either...

[CallMeLucky]

I find a few things I don't like about your doctor.

Rush to switch drugs without giving enough time.

Not using proper testing for your stage of treatment (should be running FISH)

Not doing proper physical exams when you visit (should be checking spleen and lymph nodes)

Just my opinion....

[Trey]

You should expect some drop between diagnosis and 3 months.  I would ditch the Gleevec and try either Tasigna or Sprycel. 

http://community.lls.org/thread/4250

[0vercast]

I would consider myself a prime example of why you shouldn't rush to switch meds after 3 months, especially if the side effects you are experiencing from Gleevec are limited.  I almost switched to Sprycel a couple months back, after just 3 months of treatment with Gleevec.  I was just days away from a switch, after trying a two week experiment with 800mg of Gleevec that took a very heavy toll on me.  We were going to wait until the severe side effects subsided before switching drugs, and it took about a month for my body to settle down, so in the meanwhile, we went back to 400mg Gleevec.  During that time, I kept taking FISH tests every month.  My FISH results showed that I had only dropped from 98% upon dx to 84% after three months on Gleevec.  In the next month, I dropped to 51%, and in the month after that, I dropped to under 9% after 5 months of treatment.  I'm glad I stayed with Gleevec.  It's safe and very mild, and I know what to expect, side-effect wise. 

Unless you're experiencing next to no response to Gleevec, or if the side effects of Gleevec are very uncomfortable, I would recommend staying the course for a full 6 months after diagnosis before a drug switch.  Some advice I got on here a couple months ago prior to swtching was to have a mutation test done by your onc to see if you have a drug resistance, and also consider a second opinion from a CML specialist before switching drugs to maybe get some insight on why Gleevec isn't getting the job done.

The only physical exam I ever get is of the spleen and lymph nodes

[Johnc]

I sincerely appreciate everyone's comments/inputs

The Onc reluctantly agreed to one more month on Gleevecs  to see where my numbers come in at which will put me at 5months and 2 weeks. He definitely would not let me up the dose after I requested that a number of times.

Interesting to note that most of you had your Onc feel your spleen and Lymph Nodes where my Onc never did except first visit.

Thanks Again,

Johnc

[idahobeavers]

i have had 4 differnt oncs. 2 of them checked me head to toe everytime and the other 2 didnt bother.