9 replies to this topic

[p.a.m.]

Can anyone help reduce anxiety?  I've been on gleevec 400mg since Apr07.  Numbers have always fluctuated somewhat and doctors have always said they were within reasonable area.  Have many of the side effects from gleevec..  The spasms are the worst as they are disfiguring especially at night with no relief, diarrhea/constipation, swelling of the eyes and legs, nausea, fatigue. The past year numbers have really moved from .02 to 1.1xx. They checked for mutations and found none.  They said I was becoming resistant to Gleevec.  Advised me to switched to sprycel 100mg just this past week.  I'm worried about new side effects, especially the heart/lung issues with taking sprycel. Heard a rash is fairly common also.  Can anyone provide any feedback?

[hannibellemo]

Hi, p.a.m.,

Don't be discouraged, the fact that you could develop a mutation this late in the game is pretty remote. Are those numbers on the international scale? If so, you were just above MMR before they started to rise and are now just slightly above CCyR. If not IS, I don't know what the heck they mean and someone else will have to help you with that!

I started Gleevec in Jan. of 2009 and after 9 months my liver grew tired of the abuse and I developed pretty severe toxicity. I tolerated the initial side effects pretty well, though, eye puffiness, muscle cramps, some GI issues. Switched to Sprycel 100 mg. in October of 2009. I hated Sprycel! Please do not be dismayed by that statement, I've made my peace and I've been on Sprycel now for almost 4 years with time off for a pleural effusion 18 months ago.

Sprycel can have some very severe initial side effects, headache is the most common - I didn't have that. The first night was awful, vomiting, tremors, etc. Then I developed the burning face syndrome (my description). These all got better and after a month just some strange, benign ones remained. Then on Thanksgiving Day the crushing fatigue hit. That lasted for about 4 months and while I never missed a dose I often took it with tears in my eyes - seriously! The fatigue left almost as quickly as it came and except for heat intolerance (which I still have - weird) I did great, reaching MMR after 8 months. At 2.5 years (on Sprycel) I developed a pleural effusion and took a Sprycel break and resumed at 50 mg. At 15 months I regained MMR. I've never developed a rash.

My point is, it seems you stuck with Gleevec despite the side effects, don't give up on Sprycel! There are many on here whose experiences with Sprycel have been fantastic. They tolerate it much better than they ever did Gleevec. That just wasn't my initial experience.

I have EKGs every 4 months or so - never a blip. I keep my blood pressure and my lipids under control - something "recommended" to try and avoid a pleural effusion.

It seems as though a change may be necessary for you. Many people develop a resistance to Gleevec and move on. You can, too! I don't believe in suffering in silence, my entire experience is on this board, feel free to search under hannibellemo. If I couldn't whine to my BIFs on this discussion board, CML wouldn't be nearly as much fun!

Good luck,

Pat

[CallMeLucky]

Far from perfect but life is better on Sprycel than it was on gleevec

[Marnie]

I was on Gleevec for about 1.5 years, and my numbers were not great, but tolerable.  My side effects were not great but tolerable.  When my numbers started to rise slowly, I switched to 100 mg Sprycel.  I started at half dose for a week, after a 5 day break from Gleevec.  The lowered dose helped with the monster headaches that I had heard about.  I had very few side effects and great PCR numbers for the first 2.5 years.  Sprycel worked great for me.  I was its number one fan (and still am, probably).  I am right now recovering from a pleural effusion and am off Sprycel (it's been a week).  Going in for a follow-up x-ray on Thursday and then my doc will let me know if I should start back on my meds. 

So, my comments (for what it's worth), is that sprycel is great. . .it worked far better for me than Gleevec, but be very aware of the potential side effects and be very proactive with your oncologist about how your body is responding to it. 

Good luck.

PS. . .Pat. . .I think you were right about not having a collapsed lung.  I got the doc's report from the thoracentesis.  It didn't mention collapsed lung.  So I guess it was just a really squished lung and a whole crapload of yellow, foamy, disgusting fluid.

[chriskuo]

After I was on Sprycel 100 for about 9 months when I developed a severe pleural effusion.  I used diuretics to eliminate the PE and meanwhile I switched to Tasigna.  However, Tasigna had worse side effects

and I eventually switched back to Spprycel, this time at 50mg.  I have been on this dose for over 5 months and have not developed PE again.  However, I do take Lasix 3 times per week.

[August1]

Hi p.a.m,

I switched from Gleevac to Sprycel about 4 months ago. I also had a lot of GI and abdominal issues with Gleevac and my numbers were "OK." Since switching I have seen a good drop in my PCR (from 1.0 to 0.6). SO far the side effects with Sprycel have been pretty manageable. I did develop a rash (keratosis pilaris) but neither my dermatologist nor my onc were concerned as it's really not bad. As with Gleevac I do have some fatigue and headaches but they are manageable and I am happy to see a positive trend in my PCR. My hope is for this to continue and then potentially move to a lower dose in the future.

WIth both Gleevac and Sprycel I've found some benefit in using probiotics  which helps me a lot with abdominal discomfort. I also take Magnesium and B12.

I wish you the best and am sure you'll do great.

Bill

[Trey]

The key is that if one TKI is not working "well enough", then a switch is a good idea.  It seems to be a good idea in your case.  That is the biggest anxiety reducer, switching to obtain a better response.  As for side effects, we all respond differently.  So we need to try it and see how it goes.

[p.a.m.]

I'd like to Thank everyone for the feedback.  Still extremely nervous but will move forward.  I pray I don't have the PE or other serious side effects. 

[0vercast]

I just made the switch from Gleevec to Sprycel a little over a month ago. I experienced the most miserable headaches of my life for two solid weeks, 24 hrs a day, and then they rather abruptly went away. I also experienced a lack of appetite for about a week, which was kind of ironic, since one of my primary side-effects from Gleevec was a severe lack of taste/metallic taste (dysgeusia, I think), and after ceasing the Gleevec, my taste returned to normal within a few days, yet I had no appetite and didn't care whether I ate or not.

Perhaps you can suggest a reduced dose at first in order to possibly avoid the headaches. I did some research regarding Sprycel headaches, and it appears many get them for the first week or two, but they eventually go away. I can personally attest to that now. Otherwise, it was smooth sailing, and I prefer the Sprycel.