28 replies to this topic

[elvis]

I just started Sprycel four weeks back and doing my blood work regularly every week for the first weeks.

My last 2 ALT readings are :  40 and 43  (Normal range 5-37 as per my lab)

My last 2 AST readings are : 33 and 47 ( Normal range 10 - 47 as per my lab)

My ALP levels are in normal range ( 77 and 73 Normal Range 33-97 as per my lab)

Does anyone have similar experience of this fluctuation when beginning sprycel?  Are there any options or suggestions to manage liver function better?

Any input or advise is greatly appreciated.

Regards

elvis

[Trey]

Not high enough to worry about.

[elvis]

Thanks Trey.

[winespritzer]

Hi Trey,

My AST is 78; ALT is 156 and ALP is 132 after 1 month on Sprycel..

I've been taken off 5 mg Crestor by internist who told me not to worry.

Oncologist said he'd perhaps lower dosage if test at end of this month shows higher readings.

Both doctors said I could drink milk thistle.

I think the internist also said liver can sometimes repair itself.

Thanks,

Winespritzer

[Trey]

Yours are more in the range where something should be done if they persist that high.  If other drugs can be reduced or eliminated first that would be a good idea.  Otherwise a drug holiday may be needed.

[elvis]

What is Milk Thistle? Does milk thistle really help in cases of liver toxicity caused by meds?

[winespritzer]

Dear Trey,

Thank you very much for your reply. Oncologist noted the alt was 30 before I started Sprycel  treatment. I began the 5mg Crestor after beginning the Sprycel.

Not even sure what can bring the numbers down. Wondering if  I somehow have hepatitis.

Next blood test is April 25th and doctor will consider dosage reduction if nec. Hope I don't need a drug holiday. He said it was prudent to wait 6 weeks after the high readings but is waiting 8 weeks, 3 mos after initializing Sprycel.

Internist said those high numbers can go higher before I should worry.....should I now worry about him????

Holy cow,

Winespritzer

And am off the wine for sure

[winespritzer]

Hi Elvis,

I read online that milk thistle (from the ground up seeds) is good for liver health. It's hard to find - maybe at Whole Foods.  I was cautioned by some on these posts that I should check with my doctors. So I stayed off for a few weeks.  Now, both have said, for me, that it is OK to drink it.

Good luck,

Winespritzer

[GerryL]

Always best to check things out.   Mind you when I started to mention some of my supplements to my doc he didn't seem too concerned.

I've started taking a liver detox supplement (which includes milk thistle) now I'm not on a TKI.

[hannibellemo]

Hi, winespritzer,

I developed liver toxicity on Gleevec back in 2009. In May my AST/ALT was 26/23. At the end of July they were 52/88 and when I went to Mayo for my 9 month check in August they were 531/1112! I was immediately taken off Gleevec and Prilosec. The counts continued to increase up to a high of 752/1344. I felt great, an ultrasound showed my liver looked normal however, it was definitely a drug induced hepatitis. It took 8 weeks for them to return to normal and I started on Sprycel in October. Later, after it was all over, my local onc, who was very upset that he had missed it, mentioned that he didn't think I would have qualified for a liver transplant because of the CML. Sometimes, it's a good thing when doctors don't share!

Please make sure your onc keeps a close watch; anything over 100 in ALT bears watching.

Good luck!

Pat

[Trey]

I would wait for the next blood tests to confirm.  You are not in any danger of liver injury.  The liver counts drop after drug cessation, so it is drug induced, not necessarily real damage.  I don't know if milk thistle helps, but I doubt it. 

[winespritzer]

HI Trey,

Thank you for your absolute support.  I think the milk thistle will help me .05% for psychological reasons. I am already on a sort of low fat diet but I told myself I could go for a liver transplant if nec. Am just hoping that I not have to reduce my Sprycel.  I just got my next monthly supply and at $480, that's a big chunk of change.

Winespritzer

[winespritzer]

Holy Cow!

Thank you for sharing. I will definitely manage my oncologist. Now I know I might have to go with reduced or zero Sprycel. Guess I'd go on Gleevac.

Meanwhile everyday that I arise I look at my eyes to check for eye puffiness, another Sprycel side effect.

What happened to your CML numbers while you were off the meds? And did you revert back to pre-diagnosis symptoms? Also did you then have to adjust to the side effects of Sprycel?

Thanks so much,

Winespritzer

[winespritzer]

Dear Gerry,

Wondering what your liver detox is called; will check with doctors and also why are you off the tki? Do you have a toxic liver?

Thanks,

Winespritzer

[hannibellemo]

Hi, winespritzer,

It was kind of a double bummer because my FISH came back that I had reached CCyR on the same day they took me off Gleevec! My PCR did increase in the 7 weeks I was off any TKI waiting for my liver function numbers to return to normal, but I can't remember what it was.

I hated Sprycel for the first 6 months (you can search my posts for the details but I wouldn't worry about it if I were you because you seem to be doing fine and my experience has nothing to do with yours). I was MMR at 8 months on Sprycel and then at 2.5 years developed a pleural effusion. Off Sprycel for almost 3 months for that to resolve and lost MMR in that time period. I am now on 50mg. Sprycel (2 years) and regained MMR quickly and am sitting at .02% on the International Scale.

I sleep on a 4" wedge and it does wonders for the eye puffiness.

Good luck!

Pat

[Tex]

Pat,

Your PM box is full.  I tried to answer but...well, maybe we can have more than five PMs when they finally switch this thing over.

[hannibellemo]

Thanks, Tex,

I cleared my box late this morning to be sure I'd get your message if you had time to answer. Read your post, very nice, leaves the door open if someone wants to walk through.

Pat

[hannibellemo]

Sorry for the short hijack, Elvis!

Pat

[Marnie]

Winespritzer. . I love your comment that you "manage your oncologist."  That's what I feel like I do. . .I only wish more patients did this.  So may people do not get involved in their own treatment.  Anyway. . .thanks for that quote. 

Marnie

[elvis]

I am very pleased to see the amount of information that is being shared.  All of this information really helps and puts things in context.

Thanks everyone.  I will keep my numbers posted after my scheduled blood tests on April 18th.