5 replies to this topic

[BY196]

Hello:

I have been lurking since my CML dx in January 2011 but have only posted replies a couple of times. I have benefited greatly from all the information and support here and have sent several acquaintances/friends/colleague to other LLS boards as a result of finding this one. 

I was diagnosed in chronic phase and have been on 400 mg of Gleevec since dx.  For the first few months, I had no/minimal side effects but since about August I have had a lot of musculoskeletal pain and fatigue as well as some bothersome autonomic-type symptoms (orthostatic intolerance, seemingly slow gastric emptying, weird sweating) that may or may not be Gleevec-related.  Luckily, I never had any problems with myelosuppression on Gleevec. My molecular response measured by PCR has slowed: I had a 2.77 log reduction on my last PCR which was taken just after my one-year mark, following a 2.4 log reduction at both 6 mos and 9 mos.  With all this in mind (plus the relatively recent focus on TKI cessation once at PCRU), my onc and I decided I should try a switch and I settled on Sprycel.  My insurance company was completely cooperative, so this is all happening much more quickly than I had expected!

I have three kids and am trying to keep working, so I am worrying a lot about disruption resulting from the switch. I am also making myself a little crazy worrying about new side effects.  I was hoping to get some feedback on the following questions. I have done a lot of searching in the archives so if you've posted on threads I could find by searching for Sprycel or myelosuppression, I've probably read about your story.  That shouldn't stop you from reposting here but I don't want to annoy anyone by re-asking questions that in some cases have been asked before.

1.  For those of you who switched meds, what wash-out period (if any) did you have in between?  Did you wish it had been longer?

2.  For those of you who switched to Sprycel, how long did initial (worse) side effects last? How much did they interfere with your normal activities? I have read many posts where people mention headache, nausea, but I guess I'm wondering whether these are the kind of headaches where you can't get out of bed or the kind where you think every so often boy this headache is a little annoying.

3.  For those of you who switched to Sprycel because of Gleevec side effects, did anyone feel that Sprycel side effects (long-term, not initial ones from starting) were worse than those on Gleevec? Did you experience myelosuppression on Sprycel (especially interested in those who didn't have myelosuppression on Gleevec)?

4.  For anyone who has had pleural effusion as a side effect, how was it detected?

Many thanks for your help!

Beth

[ChrisC]

Hi Beth,

It sounds like you are amazing, actually, working + three kids + CML + Gleevec + already a 2.77 log reduction! How do you do it?!

I am hoping for you that you have a most speedy CML response to Sprycel, and no side effects : )  Good luck!

If you searched you've probably seen my previous postings, so forgive me please if there's nothing new for you here.

1.  For those of you who switched meds, what wash-out period (if any) did you have in between?

          I switched from Gleevec after seven horrible months of side effects, leading to trying reduced dosages and even TKI cessation for a month, after which the CBC and PCR numbers started jumping up and I was switched to Sprycel. I had a one day TKI vacation in between G & S, but that was after a month of "medication vacation" followed by one week of G 400mg while the Sprycel was being ordered.

— Did you wish it had been longer?

          For me it was fine. But because the previous one-month Gleevec vacation had caused my numbers to jump to where I was worse off, PCR-wise, than I'd been two months after dx, I was so very glad to be back on treatment promptly.

2.  For those of you who switched to Sprycel, how long did initial (worse) side effects last?

          I didn't feel any side effects from the Sprycel at the switch (other than one tiny bout of upchucking during the first night), though a good effect was after a few days I was blessed with the heavy blanket of Gleevec "blah" lifting while I was brushing my teeth and I said to myself in the mirror: "I'm back!" However, for the next couple of years I did continue to have debilitating fatigue (five naps per day, etc.) and brain fog, etc. Blood work showed nothing that indicated "there's the cause of the fatigue, let's fix it!" and for the more than two years that I was on Sprycel, those symptoms ruled my life. After two uninterrupted years of PCRU I was given permission to cease Sprycel and have monthly CBCs, CMPs, and PCRs. All's well so far: next month is my six-month PCR, and if it too is 0.000 then I'll feel that a big milestone has been reached. Yay Sprycel!

— How much did they interfere with your normal activities? I have read many posts where people mention headache, nausea, but I guess I'm wondering whether these are the kind of headaches where you can't get out of bed or the kind where you think every so often boy this headache is a little annoying.

  N/A. Others will share their experiences of this for you. As I didn't have headaches, etc., I only mention it to say that apparently not everyone gets them.

3.  For those of you who switched to Sprycel because of Gleevec side effects, did anyone feel that Sprycel side effects (long-term, not initial ones from starting) were worse than those on Gleevec?

  Compared to being on Gleevec, with Sprycel I felt so much better inside, even with the fatigue and brain fog, and let's not forget the huge benefit of no gastric problems on Sprycel: that aspect of Gleevec was best forgotten. I lost a lot of my hearing due to either high WBC (459k at dx) or Gleevec, who knows, but that appears to be permanent. Everyone is different, but for me it was the best change of TKI treatment imaginable. I'm so very grateful for all the work that's gone into all of our CML treatments.

— Did you experience myelosuppression on Sprycel (especially interested in those who didn't have myelosuppression on Gleevec)?

  I had some myelosuppression on both G and S for at least six months after starting each of them, but as with most of us, the numbers mostly normalized, and still there are ups and downs: everyone has that. Over time, when the numbers were too low, we'd do more frequent testing just to keep an eye on things (mostly when NeutAbs got well under 1.0), though I never had to stop Sprycel for low/high numbers. Even when I became PCRU — an over five-log reduction — after four months on Sprycel (I started at an awful 0.0015 log reduction, so that was some response!), my blood work was still low in a number of areas. (Seven months after dx, while on/off Gleevec, the best I'd done was a 1.256 log reduction, so this four-months-to-PCRU after starting Sprycel was the huge gift of "fast and speedy response" that is so precious.)

4.  For anyone who has had pleural effusion as a side effect, how was it detected?

  N/A

I don't know if any of this is helpful to you, or to anyone, but I hope so. All the best to you Beth. Let us know how it goes for you.

ChrisC

[BY196]

Thanks for your input Chris.  It was so reassuring to read that "it was the best change of TKI treatment imaginable."  I'm very risk-averse, so it's good for me to hear that.  I also know exactly what you mean by the Gleevec "blah." If that lifts, it will all be worth it.

Congrats on your speedy response on Sprycel and best of luck with your TKI cessation. 

Beth

[Judy2]

Hi Beth,

I switched  to Sprycel 50mg after Gleevec 200mg didn't decrease my PCR numbers, couldn't tolerate the side effects of 300mg and could not tolerate the side effects of Tasigna. I was off TKIs for 5 days before I made the switch and that worked out well. It is too early to tell if Sprycel is working on a molecular level yet, I have only been on it for about 5 weeks but I have  high hopes for this med. Also, I am tolerating it much better than Gleevec 300mg or Tasigna. I did have a rash with welts, 5mg Prednisone has taken care of that, muscular pain, a Flexeril every once in awhile takes care of that, a liitle nausea at first, but that is now gone, shingles, not sure if Sprycel contributed to that or not and fatigue but I also have other health issues so I feel that may be due to a combination of things. All in all, I like this med the best, I am able to manage the side effects. Beth, keep us posted. please let us know how you do.

Judy

[chriskuo]

My pleural effusion was detected when my cardiologist sent me for a stress test.

I had had trouble exerting myself, and by the time I saw my cardiologist I could not keep

up a normal walking pace.

Before putting me on the treadmill, they did an echocardiogram which detected the fluid.

They sent me for x-rays and to a pulmonologist.  I had well over a liter of fluid on the left

side and about half that on the right side.

They considered draining it, but the final decision was to discontinue Sprycel and take

diurectics.  In about 3 weeks, the effusion was largely cleared and I was able to discontinue

the diruretics and begin Tasigna.

[akjones]

Your situation sounds similar to mine. I just started Sprycel three days ago due to a good but not great response to Gleevec and Tasigna. I took my first Sprycel dose 18 hours after my last Tasigna. The Gleevec side effects were bothersome but managable. The Tasigna side-effects were minimal. I had some weird flu-like response the first day to Sprycel, it was like having the flu for 8 hours, went to bed early and literally slept it off. Felt fine the next day. Only symptom I have today is a bit of a headache, similar to my Tasigna headaches.

I too have a bit of worry about the Sprycel side effects, but my doctor's experience with the most serious (plural effusion) is that if you had minimal fluid retention (puffy eye, etc) on Gleevec then this is very unlikely to be a problem on Sprycel. Also agree with chriskuo that if you do get this side effect and it is serious then you still have the option of Tasigna, which may also get you to PCRU. Only downside is the fasting requirements that are a scheduling problem.

.

Andy