17 replies to this topic

[CallMeLucky]

I know this question can't be answered easily - hence the catch 22 with personalized medicine, it is personal.

Nonetheless I find myself in a situation where I will be going in to see my onc in a few weeks.  I am about 17 months into treatment on Gleevec 400mg.  I hit milestones pretty quickly.  I was diagnosed in 7/2010 and was MMR in 3/2011.  I went PCR negative in 6/2011 and then jumped back into detectable PCR but still low level >3log reduction.  From a treatment standpoint I feel I am doing well and the disease is under control.  This PCR will be telling to see if it is undetectable again or if it stays at the low level (going up is always an option, but I'm not expecting that to happen).

My issue lies with side effects, they are not terrible, but for the most part I feel pretty lousy most days.  I am 39 years old and I feel like I am well into my 60's.  My muscles hurt and I am quite tired.  I try to exercise to push through it, but it is getting harder.  I feel I am getting weaker (I can not lift as much weight).  This may be muscle or simply fatigue.  I also have some trouble concentrating and getting motivated, which can impact my work, again I feel this is fatigue driven.

So I am considering changing drugs.  I have spoken to my doctor about this before and she is open to the idea.  I have held back because I feel like I am doing pretty well on Gleevec and I don't want to jump out of the frying pan and into the fire.  I'm going to be furious with myself if I switch drugs and my counts tank or I wind up with a serious side effect from a more powerful drug.  On the other hand, I want to have some of my old life back.  I am tired of being tired and feeling like crap.  I hear some people say that when they switch drugs it is like getting their life back, others not so much.

My doctor does not appear to be the type to mess with dosage too much.  I don't think lowering my dosage of Gleevec is a good idea so that means moving to Sprycel, most likely 100mg or Tasigna 300mg bid.

So which one?  That is the question.  I lean towards Sprycel because it is one pill a day with no eating restrictions.  But the side effects of Sprycel like pleural effusion and the pulmonary hypertension make me think twice.  Tasigna is hard with the scheduling and I worry about skin issues since my skin has been sensitive to Gleevec and I have had some mild rash.  I think I would trade some skin issue in place of the muscle pain and fatigue, but I don't want to look sick to my kids and I don't want to be in a situation where the skin issues become painful.  I don't worry too much about the QT longation issue as that doesn't seem to really be prevalent.  I think both drugs will keep my CML under control - obvioulsy I don't want to see my counts tank.  So which drug would make the most sense to try with the intention of trying to get away from fatigue and muscle pain as much as I can?

I had read a study where they inferred that Tasigna seemed to have less side effects than Sprycel and since I have done well on Gleevec, it seems like Tasigna would probably work well for me.  Not sure if Sprycel opens another door that could be better or worse.  I wish there was a test that could tell how you would do on the drug before you take it.  Not easy changing from one to the other.

Looking for input from all, but particularly those of you who have switched, especially anyone who has been on all three.

Thanks for the input.

[Dina]

Hi Lucky,

If I were you I would switch to Tasigna. We are so close in age, I'm 36 and Tasigna is working great for me.

I don't have any pain whatsoever, and the only side effect that I'm having is a dry skin on my face.

I can go to the gym and still do all kinds of excersizes without any limitations.

However I didn't have any PCR tests yet so I don't know hows the drug working there, hope and pray just as great

as I feel just fine on it.

Dina

[MJB]

I think it is wonderful that you ahve been responding so well! And I totally understand you're wanting to switch! Side effects are such an individualized thing that all you can do is try and see what your experience is. It seems logical to my uneducated mind that because Tasigna is basically a stronger version of gleevec you should  expect a similar good response. Is there a down side to trying a different drug? if you don't like it can you go back to Gleevec?

At my last onc appointment we discussed my unhappiness with the weight gain I have experienced on Tasigna. The doc was not enthusiastic about my switching to sprycell but would do what I wanted. I opted to try a small dose reduction to see if that helps with the side effects. I have to say that on 300 twice a day I feel more like my pre-cml self and ALOT better than I did on Gleevec!! I have my fingers crossed that my bcr-abl doesn't go up again on this lower dose!

Which one is your gut telling you to try? I say go for it!!

Good luck Lucky!

I Forget

[CallMeLucky]

Thanks for the feedback Dina,

MJ - I think I always just figured I would go to Sprycel, but for some reason I feel like my gut is leaning towards Tasigna, but I just don't know.  I can honestly say that I am 50/50 on it with some practical reasons why I think Sprycel would be better for me, but then in the gut I think maybe Tasigna.  I worry about being compliant with Tasigna.

[Taylor]

I'm on Tasigna 300 bid (I'm 25 years old); it's the only TKI I've been on.  I do have a fatigue issue but it's not debilitating and it is much better than before I was diagnosed.  I have been on it since last February and I'm at the point where side effects seem minimal, although they cycle.  I too was worried about the QT thing--it actually gave me a serious anxiety problem for several months in the summer--but as you said, it's not really a big deal.  I am losing/not regrowing much hair on my scalp and my body hair's growth is insanely slow, but this only started at the end of September and I hope it comes back around.

In any case, I would lean toward Tasigna as well if I were in your shoes, particularly since I kind of see Tasigna as "Gleevec 2.0" while Sprycel is different.  The dosing issue is hard.  I just got married two weeks ago and while we aren't going out much to keep a budget, I do find there are times when it is difficult to stay with dosage, or you may be out when you don't expect to be and don't have your medicine with you to stay on track, etc.  I occassionally have done 16/8 hour dosing interval on Sundays (my schedule gets very messed up due to Church in the AM and needing to eat afterward), sometimes Saturday is necessary, although I don't like the way my body feels the next day.

But looking at the big picture, I've grown to see the dosing schedule as the main frustration.  Rarely do I cramp anymore (usually only if I stretch my feet weird), my bones and joints hardly ever hurt anymore either, except sometimes upon waking up.  Some headaches but never a killer one.

One other thing: if you have sharts, Tasigna may be a nice change for you.  I had them due to having my gallbladder removed and still eating fast food (too fatty), but Tasigna has given me basically rock-hard stools.  The no-wipers were great at first but I have had problems with hemmoroids so you'd also need to consider more fluids/magnesium/stool softener.

Pros and cons but most of it seems like it would be familiar territory for a Gleevecker.     

[CallMeLucky]

It's interesting what you post.  It sounds like you have the same side effects I do, but not as bad.

[tiouki]

Hello Callmelucky,

I answer here because I was in the same situation after I was diagnosed, I absolutely wanted a 2nd generation TKI but didn't which one would be better for me.

Finally I was asked to get into a trial with sprycel, It's been more than three months now and I don't regret it. One thing that is nice with sprycel is that you can take it anytime during the day (at dinner time it's better actually), which I think makes things easier and make you think less of the disease compared to Tasigna.

About side effects I have absolutely none with sprycel (I am 22). If you have no lung problems + a quite young age (39) you should not fear pleural effusions as they are very rare in that case. Things were worse with 70mg twice daily, especially for older people (mainly) which could not metabolise the drug very well.

I know little about Tasigna but I think it's also a great drug and better tolerated than gleevec for sure. But here are some of the advantages of sprycel if that can help you

Good luck!

Pierre

[CDW]

Gary,

as you rightly identify medication and the associated side effects are a highly personalized issue - just because someone is doing well on a particular drug doesn't mean someone else won't have more difficulty with side effects on the same drug - but I know you know this and I'm preaching to the choir.

I've been on Tasigna for 13 months now as a first line treatment and it got me to PCRU real quick ~6 months and stayed there (knock on wood). All the side effects I've had with it have been minor and also cyclical: hair loss (grew back), body hair loss (not a bad thing but grew back, just thinner), slight rash on face (went away, but needed some hydrocortizone for a few days), slight skin rash (my skin is just a bit dry these days), Headache when i first started (went away after 2-3 days), some acid reflux (again managed this and it went away). This may seem like I've had a lot of side effects but overall they've all been minor (level 1).

the good news is I'm 33, go to the gym 2-3 times a week and can run 3-5 miles at reasonable pace without feeling too tired. I work 40-50 hours a week and earlier in the year i was managing to do 12-14 hour days for a period. Admittedly that would make most people tired and I did need to rest a bit more on the weekend, but who wouldn't?

Overall I'm really pleased with Tasigna. I find the dosing schedule to be a non-issue; now that I have a routine I can work it into my day pretty easy. I do 0930AM and 1030PM. It is simply a case of getting a watch with an alarm and remebering to take my meds with me when i go out. I took my meds last week half way through my golf lesson, no worries.

I remarked to my wife this week that if it wasn't for the constant uncertainty regarding medication access (i.e. who pays for it - my situation is complex) I really would forget i had leukemia 99% of the time because I feel pretty normal.

As someone mentioned earlier, Tasigna is allegedly Gleevec 2.0. As your body is already used to Gleevec then the transition may be easier, I don't know for sure. If I was in your shoes I would progress to Tasigna as it is from a similar family and if it's good fit for you then all is well. If you don't like it then you still have the dasatinib option.

My other personal view, and this is me being pessimistic but cautious, is if my results started seeing an increase on Tasigna then Gleevec isn't going to fix that and I have the option of going to dasatinib. I want to keep dasatinib as my (different) standby in case nilotinib/imatinib doesn't work out for me - simply keeping my fallback options open should there be a bump in the road later on. Again, this is my pessimistic "what if" brain thinking.

Good luck with whatever you choose and I am aware of my bias due to my good experiences with Tasigna Let us know the path you choose to take. 

best wishes all

Chris

[CallMeLucky]

Chris - that was a great response with a lot of good information to think about.  Thanks for posting this, I will take a lot of what you said into consideration.

Gary

[BPilgrim]

I also have major fatigue on Gleevec, and wonder if switching to Tasigna is pointless since it is essentially a suped-up Gleevec that binds to the BCR-ABL in the same way.  Wouldn't that mean the side-effect profile would be the same for a patient on either drug? 

Anybody have thoughts on that?

[CallMeLucky]

It depends on what is driving the fatigue.  Tasigna is a more targeted TKI so it does a better job of hitting its intended target, wheras Gleevec also hits other targets unintentionally.  Fortunately when they were developing Gleevec these additional targets were not a show stopper.  So if the fatigue is being driven by Gleevec hitting something that it doesn't need to hit in order to control CML, then there is a good chance that Tasigna, which may not be hitting those other targets will not result in the fatigue side effect.

From what I understand, fatigue is common across all the drugs, but for many, it appears that Tasigna and Sprycel can cause less fatigue than Gleevec, or at least that is what I am planning on finding out.

[GerryL]

Hi Lucky

Sound like you have made the decision to switch - good luck with whichever one you choose.

[BPilgrim]

That's very interesting about the targeting.  I'm seeing my onc on Monday to have the first serious discussion about switching.  I wonder which drug he'll lean toward.  Good luck.

[Trey]

More info:

http://community.lls.org/thread/4250

[grannyd]

Hi Lucky. I have only been on Tasigna but I can tell you that the only side effect I have is fatigue. I just turned the BIG 60 a couple of weeks ago so that & I don't work outside the house anymore may have ALOT to do with the fatigue. I have been taking it since Feb. 1st of this year. I hit CMR in 6 months & only pray I can hold onto that. I am up at 5 AM every day, drink my coffee & take my morning pills at 7:30. I eat by 7PM & take my evening pills by 9:30. I have tried alot of schedules & this works best for me. I ask my specialists about the times & was told they are perfect, I have never missed a dose yet!!! I wish you all the best in your decision & pray all will be good with you! prayers, granny d

[janne]

Lucky,

I was on Gleevec for two years. Had great response, although I often had to adjust the dose to accommodate my work obligations due to side effects and not wanting to miss work. Still, though had great response. At 24 months the fatigue finally just got to me. I was so tired of being tired and on that particular day, the muscle fatigue and weakness just got to me. The cognitive/ concentration issue was just miserable at that point and I was not liking it. I did take a break (my risk, not a recommendation) and when resuming drug therapy, I went on Tasigna. Not having tried Sprycel, I cannot speak for all three, but I can say the fatigue has been much less off of Gleevec. I am mortified by the reports of patients on this board who have attained PCRU and their fatigue and other side effects have persisted at the same level. The illness diminishes but the poor quality of life overtakes them due to drugs. I would encourage you to change drugs. This is really a quality of life issue here. You are a young father who needs to recover some quality to your life. I personally am in favor of pursuing Sprycel in the near future, at a dose that will allow an optimal response without compromising my energy and overall quality of life. BOTH are important to me and I have to find this balance in this treatment. I am grateful to the doctors such as Dr. Cortes (he is not my doctor) who are willing to acknowledge side effects as being as pertinent of an issue as halting the progression of the disease (per Michael's report). I also would emphasize that just because you switch drugs to find side effects that are less of an interference with your desired quality of life, there is no reason why you could not turn back to Gleevec. Trey made a rather humerous comment on that note once, to the effect of it NOT being an irreversible decision.  I did that too, while adjusting to the initial skin inflammation I had with Tasigna. I came back to it gradually (no more skin inflammation) and had a great response throughout my "experimentation". My doctor's response was, "I don't care, as long as you are on something!" I cannot emphasize how important to me the quality of life issue is. I am all too aware of the necessities of "following the rules" in regard to taking these drugs, but I have more room for risk-taking due to family responsibilities being behind me and I am willing to push it a little. I made my peace with God a long time ago. Good luck Lucky. You should have your quality of life and I believe you will have less of these side effects if you change. If not, you can certainly change back.

[Judy2]

Hi Janne, I read your very interesting post. -     " I did that too, while adjusting to the initial skin inflammation I had with Tasigna. I came back to it gradually (no more skin inflammation) and had a great response throughout my "experimentation".     Through your experimentation where you able to take Tasigna without any skin inflammation or did you still have some but in a mild form? What was your initial inflammation like? I'm swithching to Sprycel because after only 3 days of Tasigna the rash was so bad on  my face that my chin and part of my forehead were swollen. My onc wanted me to restart Tasigna, after being off it for one week (the rash did clear) ,at one pill per day but I did not feel comfortable with that so I'm about to start Sprycel. I also have idiopathic urticaria and angioedema so I start out with a very sensitive skin. Just curious as to what your experimentation consisted of. Thanks.

Judy

[janne]

Judy2,

I responded to you with a private message in regard to your question. Janne