10 replies to this topic

[Lisal]

Hi all,

I've been on Gleevec 300mg since I was diagnosed in May 2007.  I saw my onc a few days ago. Every time I go in, I complain about fatigue. We've discussed switching drugs before, but always stuck with 'the benefits outweight the side effect of fatigue'  arguement.  I'm just so frustrated with being so tired all the time.  I work full time and I use all my energy for work. Fatigue has been a quality of life issue. The fatigue was much worse at first but improved around 6 months after starting G and again after about a year.

This time she said she is comfortable switching me to either Sprycel or Tasigna.  She left it up to me. I have had an excellent molecular response to Gleevec.  My Quantative PCR's have been negative since Dec 2008.  (My first onc never performed a PCR, so I could have been PCRU prior to Dec 2008, however  I acheived CHR and CCR within 6 months of taking G).

Has anyone else switched from G due to a non-hematological side effect?  I know that everyone's response to the meds are different.  I am worried that I am trading in one side effect (fatigue) for something worse. I am leaning towards Sprycel.  I believe she said that is a once a day and doesn't have the food restrictions that Tasigna has.  Also, I am worried about the QT black box warning with Tasigna.

Thanks for any advice or comments

[ChrisC]

Hi,

My fatigue switched "flavors" when I switched from Gleevec to Sprycel, meaning that while there was still fatigue there were fewer other side effects (that also affected quality of life and activity) and there was a lifting of some aspect of mental fog that was there with Gleevec.

Not sure that is any help, but it would be worth trying the switch and see how it works for you.

Good luck!

[CallMeLucky]

I am also thinking about this, but like you have been hesitant because I am doing fairly well on Gleevec.  If you do it, I am curious to hear how it goes.  A big question for me is what dosage of Sprycel.  I'm not looking to take on Tasigna with the food restrictions and the double dosing.  I am also worried about the Tasigna rash.  With Sprycel, it appears the more severe side effects seem to coincide with higher dosage.  So if I went to Sprycel I am wondering if my doctor would consider 70-80 mg instead of 100 mg.  We haven't discussed in detail other than she said she would switch me if I wanted but warned there was no guarantee the fatiugue would go away and I may develop other side effects.  Also have to consider that when you first switch you have to go back to weekly CBC for a short period.

[scuba]

There is emerging evidence that low dose Sprycel can be very effective for Leukemia treatment:

http://www.ncbi.nlm....pubmed/21821988

http://www.mendeley....s-leukemia-cml/

Like the patient in this study, I am also on 20mg per day.  There are no side affects that I can report.  There is no fatigue, nausea, skin, or other issues.

For those who are looking to make a switch from Gleevec due to side affects - it may be worth looking into starting with a low dose and monitor response, working your way up if necessary.  But as Dr. Cortes did with me...he started me at 70mg Sprycel and then dropped me to 20mg.  He never considered putting me on 50mg...then 40mg....He just went straight to 20mg.  And I have had a 2-log drop in PCR in two months.  I will know more after my 11 November bone marrow results come back.  But I am expecting a tremendous cytogenetic response if not outright PCRu.

Switching from Gleevec to Sprycel is a no-brainer to me.

[Lisal]

I acutally spoke to Dr. Talpaz about this at the CML summit yesterday in Chicago as well as an Oncology RN.  Apparently they start you out at the recommended dose and drop you down as needed.  They said they usually don't start lower than the recommended dose. Also, they said that switching because of severe fatigue is a good reason to switch and if the side effects are worse on Sprycel, I can always go back to Gleevec.  My onc had already said the same thing.

I am trying to get over a sinus infection and when I do, I am going to switch to Sprycel.  Hopefully sometime in the next two weeks. I'll let you know how it goes.

Lisa

[Marnie]

I switched from Gleevec to Sprycel after about 1.5 years.  I had sub-optimal response on Gleevec, but was putting up with the side effects.  After I switched to Sprycel, I realized how lousy I had been feeling.  With Sprycel, I still have fatigue, but not as badly.  I don't have any other side effects, except that the back of my neck feels like it's on fire occassionally.  I did have mild headaches for about a week after the switch.

I would recommend that you discuss with your oncologist starting out at half dose for a week and then going to full dose.  That's how I did it, and I believe that it helped with the headache issue.  Some people have horrendous headaches for awhile after switching.  Also, be sure to take a drug break to get all of the Gleevec out of your system.  I took a 4-day drug break.

My doc wanted to put me on Tasigna, since he had experience with it, and no experience with Sprycel.  However, I really didn't want to go with Tasigna because of the food/schedule issue.  I'm very glad that I chose to go with Sprycel.  I feel a lot better, and my results have been much better than when I was on G.

Sprycel has been in the news lately with regards to high blood pressure, so be sure that you are aware of it and discuss it with your doc.  I'm not too concerned about that data.  I have had no issues with pleural effusion or with QT prolongation.  It is recommended that you have an EKG done prior to switching and then a couple of times after switching to monitor for problems.  Again, I wasn't very concerned.  

Be sure that you are aware of the cost (double that of Gleevec) and be sure that your insurance will cover it.  Also, if you go with Sprycel, go online to MySprycelSupport to get info about their copay assistance program.  I'm not sure if they will continue it after December 2012, but it's worth checking into.

Good luck with your decision,

Marnie

[cbrooks31]

Hello

This is my second time with cml (first time, i had a bone marrow transplant), my doc did not want to put me on gleevec due to the resistant form of cml.  I was started on sprycel 100mg(correction) in may 2011, after about three weeks of treatment I went in the hospital with severe muscle pain and weekness (i thought i had swine flu again), but i ended up having high cpk levels which were wasting my muscles away, literally.  The end result was alot of muscle pain and heart damage, but my point is that you are always trading in one set of problems for another.  I barely survived ny transplant, and I was only 23 at the time.  I am 31 now, and taking 600mg of tasigna daily.  I have a rash that covers my face, some weight loss, and my hairis starting to fall out, but i have more energy now and can get out of bed most days.  I have even started cooking and cleaning again.  You have to take the good with the bad.  No matter what.  There are no treatments with 0 side effect that I have ever heard of.  And compared to a transplant, these side effects are a cake walk for me.  But you have to get some support and understanding from people, and take the time you need to take care of yourself. - take care

[Susan61]

Hi:  I have to say that Gleevec certainly does have a lot of side effects, and the brain fog is very real.  My daughter gets annoyed with me sometimes when I cannot remember something she told me.  My husband has learned to live with it all, and he understands.  I guess I am a very stubborn person to stick with the Gleevec, but I think with me its because when I was first diagnosed nothing worked for me.  We were looking at a BMT or that was it.  So when the Gleevec did what it did, and is still doing it I just cope with it.  I am also older than some of you who want to be more active and productive.  I still can do my housework, and shopping etc.  So unless it stopped working for me, I would probably switch to the Sprycel.

Susan

[Susan61]

Hi Michael:  I am so glad your doing good, and I still follow your progress with all that you are trying to do to make some changes to how CML can be treated.

I hope all of this really helps some of the younger people in the long run, so they can live a very active lifestyle and feel good for a very long time.

Susan

[Trey]

Christi,

Did you really mean that you took 300mg of Sprycel per day? [NOTE: later corrected to 100mg]  I believe 180mg is max dosage for severe cases of CML, so 300mg would be an overdose.  The recommended starting dosage of Sprycel for chronic phase CML is 100 mg once daily.

http://www.drugs.com/pro/sprycel.html

[cbrooks31]

Trey,

You'reabsolutely right, sorry about that.  I was on 100mg once daily.  My brain is very foggy from when i took that stuff, and the bottle and leftover meds went to my doc's office to be destroyed.  I feel bad about that because I'm sure there are at least a few people out there who needed that and can't afford it.  Thank you for calling me out on that.  -Christi