112 replies to this topic

[Gail's]

Billie, I'm about the same. Muscle aches there. Does the magnesium make your stomach burn? I'm taking it with food but wondered if the burning was a fluke or if I should do something different? I am shocked to say that my onc actually agreed that gleevec was causing the muscle pain. First time she's acknowledged anything negative about gleevec. She's seemed to think it was all in my head.

[rnowinski]

Hi Bmorris. I had my liver biopsy and it showed liver damage from Tasigna. I wish I could send you all of my tasigna. I have several unopened packages of it! I am now on a very low dosage of Sprycel (50 mg) and I am having trouble with being dizzy. God I hate this. Make sure you keep up with your lab work and drink plenty of water. Good luck!

[mlk210]

rnowinski - I have the same problem with dizziness on Sprycel. It was very bad in the beginning but has improved greatly in time.

 

Diagnosed 7/2014

Sprycel 100mg 

[Billie Murawski]

Hi Bmorris. I had my liver biopsy and it showed liver damage from Tasigna. I wish I could send you all of my tasigna. I have several unopened packages of it! I am now on a very low dosage of Sprycel (50 mg) and I am having trouble with being dizzy. God I hate this. Make sure you keep up with your lab work and drink plenty of water. Good luck!

rn, I answered your question about what to do about your Tasigna   Billie

[chriskuo]

50mg of Sprycel is not VERY low dosage. There are a number of people taking 20 mg.

[JPD]

Year and a half on Tasigna.

 

First week or two - bone pain and a weird rash/skin "tightness"

 

After that (and ongoing) just hair loss - mostly in my legs and stomach (and naughty bits).  Some probably on my head, but Ive shaved my head for many years so I dont know exactly how much.

 

If it werent for the hair loss, Id be hard pressed to say I have any side fx.

[JPD]

Hi Bmorris. I had my liver biopsy and it showed liver damage from Tasigna. I wish I could send you all of my tasigna. I have several unopened packages of it! I am now on a very low dosage of Sprycel (50 mg) and I am having trouble with being dizzy. God I hate this. Make sure you keep up with your lab work and drink plenty of water. Good luck!

Im not telling you that anyone I know has done this - but I heard, one time, that people give them to their Oncs and that allows their Oncs to get people started on the meds before the insurance and specialty pharmacy shit gets going.  But thats just something I heard and have no first hand knowledge about.

[rcase13]

Hi Bmorris. I had my liver biopsy and it showed liver damage from Tasigna. I wish I could send you all of my tasigna. I have several unopened packages of it! I am now on a very low dosage of Sprycel (50 mg) and I am having trouble with being dizzy. God I hate this. Make sure you keep up with your lab work and drink plenty of water. Good luck!

How long were you on Tasigna before you had liver damage? Did your ALT/AST start creeping up?

[Bmorris]

Ok, haven't been on here for a while. The Tasigna messed my liver up and ended up in the hospital for a week with a temp of 103. Couldn't get it down and couldn't figure out why I had it. Had to go off of chemo for three weeks, until my ALT and AST went down. Now on Srycel 100 mg. can't believe the difference! I've Ben on it for a month and half and the only side effect is hot flashes. My labs are good and liver is doing good.

[rcase13]

Glad to hear things are better on Sprycel. How long were you on the Tasigna before you had issues with your liver?

[tiredblood]

Initially, I had some pretty serious joint pain, but not too bad now. Got the rash pretty early on, but doesn't really bother me.  I went through a period where I would get short of breath with exertion, but that resolved. After being on Tasigna for about a year, my head would itch so badly and on days the itching occurred, my hair would fall out, yet just thinner, like I could see my scalp mostly in the front- not bald.  Later, body hair quit growing and really dry skin set it.  When my skin was at it's driest, it would burn and actually wake me up at night.  Kind of felt like it had something to do with nerve endings. Now, I only have the burning in areas where the hair isn't growing like on my forearms, etc.  Hair became and remains super dry and fuzzy.

 

People on this discussion board suggested:

Dry Skin (CeraVe lotions)

Dry Hair (VO5® Shine, Glow & Go Beauty Oil)- start out with a little bit to see how much you need.

 

Both products have been the best I've tried.  Great advice from our fellow posters. : )

 

Side effects are a bummer, but tolerable if you have them.  I know I really don't want to take this stuff the rest of my life and wonder what kind of a toll it is taking on my body, but it has worked for the CML cells.  Just my experience since I've been on it approx. 1.5 years.

[rnowinski]

How long were you on Tasigna before you had liver damage? Did your ALT/AST start creeping up?

I was on Tasigna for almost two months. Then they took me off it for a month before my liver biopsy. The hope was that the enyzmes would return to normal. They didn't. The biopsy showed damage to the liver. The biopsy was done May8th. As of today, my liver is now functioning in the normal range.Yea! 

[rnowinski]

Ok, haven't been on here for a while. The Tasigna messed my liver up and ended up in the hospital for a week with a temp of 103. Couldn't get it down and couldn't figure out why I had it. Had to go off of chemo for three weeks, until my ALT and AST went down. Now on Srycel 100 mg. can't believe the difference! I've Ben on it for a month and half and the only side effect is hot flashes. My labs are good and liver is doing good.

Do you take the Sprycel at night or in the morning? I was taking it in the morning and having dizzy spells all day, but I wasn't having any night sweats. Now I switched and I am taking it at night. If I am experiencing any dizziness, it is during my sleep. I do have night sweats occasionally so I turn the temp down to 69 and sleep in cotton. Not very sexy but oh well..... LOL

[kavis]

Just passed 6 months on Tasigna.  My counts:

 

76% at diagnosis

1.7% - 3 months

0.01% - 6 months

 

I have very limited side effects.  My liver has been stable, my enzymes were a tad on the low side (have been taking Magnesium pills), I do notice a bit of chest cramping but it's pretty minor overall.  Also my hair is falling out, but I was losing it a long time ago so I can't really say that's a side effect, doesn't seem worse.

 

I was very active beforehand, and slowed down for about 6 weeks as my blood counts bottomed and came back.  But I have energy now, feel pretty normal, have run a half marathon and feel like I can train or do whatever.

 

I think these pills really have no rhyme or reason for side effects, they really do effect everyone differently. But for me, as you can see from the counts, it's been a miracle pill.

[Bmorris]

Rnowinski, I take my Sprycel in the morning. No dizziness, just hot flashes and sweats.

Was on Tasigna for 1.5 to 2 months. Enzymes went up to 500 before I stop taking it.
I've been on Sprycel for 1.5 months now.

[Bmorris]

RCase13,
I was on Tasigna about 2 months before I had issues with my liver.

[Bmorris]

I'm chromeson positive so I wil have to take my Sprycel for the rest of my life. So I'm wondering what it will do to my body long term. I asked my doctor and he really didn't know what to say. So he told me no more than anything else I take,like blood pressure, etc.

Has anyone else ask about that or thought about it. Any long time users on here.

[rcase13]

It's crazy how some have issues with one drug but not another. So far 9 months on Tasigna and my liver numbers are in the low teens. Hopefully it stays this way. I continue to have Thyroid issues though.

[Antilogical]

Bmorris - the TKI drugs have been available for only 15 years (Gleevec) or less (anything else), so no one REALLY knows what the long term effects are.

[DebDoodah22]

quote name="Bmorris" post="175619" timestamp="1437273908"]I'm chromeson positive so I wil have to take my Sprycel for the rest of my life. [/quote]

TREY....is this true? If one is Philadelphia chromosome positive, are they never a candidate for cessation? Please say no