5 replies to this topic

[reedgirl]

Got the call today from Dr Talpaz's nurse, "take the husband off Tasigna permanently".  The battle of elevated AST/ALT and Bilirubin has come to an end with the liver functions winning.  Tasigna, as good as it did for the leukemia, just is not a friend of my husband and his liver.  Now on to drug # 3 Sprycel.  What kind of things should we be aware of with this drug?  He will begin sometime in the next few weeks, once his counts all return to normal.  I see from some of you a side effect is low counts.  Greg experienced that on Gleevec way back in July, hoping it does not become a problem with this. It seems his system is just too sensitive to these drugs, which is so frustrating.  On one hand we are happy the Tasigna was getting the leukemia under control, but these side effects are just more than any excitement from any good the drugs are doing.

Here's to hoping the third one is the charm!  Any and all input on Sprycel side effects is gratefully appreciated.  One good note is that his brother and sister are being tested for a bone marrow match, hopefully we'll not ever need it

Audrey

[Marnie]

Hi, Audrey. . .

I've only been on Sprycel for 3 weeks now, and so far I am thrilled with it.  I started out on half dose (50 mg) for 5 days, and I think that was a good idea.  I had heard about monster headaches when people started with Sprycel.  I found that I had only a low-grade headache for the first week or so, and I still have intermittent, but very minimal headaches every once in awhile.  I feel a LOT better than I did on Gleevec.  Absolutely no GI issues at all.  On G, I had bad hand and foot cramps that were becoming a problem, and since starting Sprycel, I've had none.

Don't know how well Sprycel is working yet, but if it does its job on the PCR numbers I will be completely thrilled with Sprycel.

I take mine at 7:00 p.m., and that works pretty well for me.  Don't know if that's helped with the headaches or not.

I'm sure that your husband is aware of the possible, though not probable QT issue, and the pleural effusion.  I'm making an effort to cut down on salt right now. . .just feels like a good idea to prevent any sort of edema.  If there's a QT issue, then you need to be aware that antihistimines and some antibiotics can have a negative effect.  Just be sure to read the material that comes with the Sprycel.

Good luck.  I hope that your husband finds that Sprycel does the trick for him.

Marnie

[hannibellemo]

Audrey,

So sorry your husband is having such challenges with his medicine right now. I also experienced hepatatoxicity but mine was from Gleevec. Have been on Sprycel for 16 months and have had excellent results - MMR after 6 months. Side affects seem to be so different for most of us, hopefully your husband's will be fleeting and minor. My counts have been much better on Sprycel then they were on Gleevec so it's very difficult to make blanket statements about these TKIs.

Good luck to you both!

Pat

[VickiW]

Tell your hubby I am so sorry!  I was on Gleevec for 2 years with all the usual horrible side effects and then the stuff stopped working so I was on to Sprycel.  Just coming up on my 2nd anniversary on the drug.  As many have already told you, the initial switch isn't fun with the headaches and bone pain but because my Onc took me off the Gleevec for a week first, the transition went better than most.  Only had the headache for a day or two and the bone pain was gone within a few.    Some other side effects tend to "cycle" with the symptoms getting milder each time until, at least for me, I barely notice them now.  My big problem has been that I had peripheral sensory neuropathy caused by the CML prior to dx which was very, very, slowly progressing on the Gleevec.  However, after the first year, it was put on steroids by the Sprycel and I now have both sensory and motor involvement that is progressing much faster than before and I am now on large doses of Neurontin to control the pain.  I am sure mine is a "worst case" but you should be aware that Sprycel lists "tingling in hands and feet" as a common side effect.

Keep us posted how he does and a huge Valentine's hug to you both!

Vicki

[reedgirl]

Thanks so much everyone for the great information and reply's!  I hope his side effects are minimal as they have been for all of you.  I know these drugs are not without issues, hopefully that is one area these scientists will improve upon.  I really do appreciate all the encouragement and helpful information.  It seems that whatever side effects one could get with these med's he really gets it bad.  He has been dealing with the bad headaches on Tasigna so that wont be anything new if they occur on Sprycel, fortunately ibuprofen works so hopefully it will again if needed.  He wont start the drug until his counts return to normal, last time it took 5 weeks so we'll see about this time around.

Thanks again for the great help!  It's so reassuring to have such great "friends" to turn to for advice and support!

Audrey