10 replies to this topic

[Taylor]

Hi everyone,

I mentioned a week or so ago that I was self-experimenting with moving to a half dose of Tasigna due to possible/perceived cardio toxic effects.

One thing that has been hard on me lately are blood sugar crashes. I had some pretty bad when I first started the drug, but adapted and watched what I ate.

Now that I'm testing the half-dose, it's like these crashes have returned all over again.

Is it possible that my body had to relearn how to process things on a full dose and is now trying to strike an equilibrium again? Does that sort of thing ever happen to anyone who has gone on a drug holiday or dosage reduction?

[Marnie]

I haven't noticed anything.  I was on Sprycel 100 mg.  9 day drug break and lowered to 70 mg.  15 day drug break and lowered to 50 mg. 

I do notice that lately I've had massive cravings for cheese.  But I think that's something else.

(a total lack of self-control)

[chriskuo]

Tasigna can have significant effects on glucose levels.  Tasigna may not be the drug for you, regardless of dose..

[Trey]

There is some amount of adaptation required going on or off the TKI drugs.  As with most side effects, individual results will vary.

[tazdad08]

I have been on a half dose of Tasigna for about 6 months now. My onc wouldn't back me with this, he says that there is no medical evidence that 200mg once a day will maintain me. I done it without his consent, and when I went back for my 3 month check up my wbc was at 9800. I was in the upper 4000's on 200 mg. I will see what my test shows in a month. unfortunately.... it hasn't helped much with the side effects. Any advice on what else to look at on my cbc??

[GerryL]

Hi Taylor,

I'm not across Tasigna, being a Gleevec gal, but are you entirely sure it is the Tasigna and not something else going on.

I thought the Gleevec was responsible for my neck issues, but I've been off it for close to 3 months and I'm still having issues. So doc was probably right and it wasn't related to the TKI. LOL

[Trey]

JW

Your WBC is at the upper end of normal.  If the absolute neutrophil count is the part that is relatively high, or the EOS is high, that would be more of a concern than if the absolute lymphocyte count is relative high.  The neutrophil/lymphocyte percentages do not mean much by themselves.  CML is a disease mainly of the neutrophil/EOS lines (granulocytes), so if they start showing as high, that could be a leading indicator.

[tazdad08]

Thanks Trey for the time that you dedicate to this board. Your knowledge is a great value. I will check the numbers that you recommend later today. Thanks again!

[susanlathers]

TKI withdrawal?

   After 6 yrs of TKI, all 4 of them, I asked oncologist if I could go off Tasigna for a while to see if I felt any better.  Surprisingly she agreed to a "drug holiday".  That was Sept and my PCR was .067,  CBC and other blood tests all normal.  By Dec PCR had gone up to 70%, blood sugar had returned to normal (Dr. finally admitted Tasigna dramatically affects blood sugar) and my hair stopped falling out.  These were the only 2 side effects that went away while on drug holiday. All my blood test, including white count, remained  within normal range during that 4 months I was off TKI even tho PCR rose quickly to 70 %.  I still felt just as lousy every where else, so will assume it's just the way my body is and will look at other methods to deal with it.  All total I was off TKI 4 mo. I've been on Bosutinib since Jan and it frequently makes me so very nauseated but I will keep trying it.  Haven't had PCR yet but assume it will come down quickly. regular blood test every 2 weeks and they are normal so far.

   I had to get this experiment out of my system and put a lid on any hopes I could go off TKI, at least until they develop something else that will kick every one of  those pesky little devils out once and for all.

   Acceptance has never been a strong attribute of mine but I am getting better and better the older I get and CML has been a good teacher.

Susan

[Marnie]

Hi, Susan. . .

I don't think I'll ever be a candidate for TKI cessation, either.  I've been a turtle the whole way.  Darn.