6 replies to this topic

[CallMeLucky]

As I get ready to make the big leap I was wondering if anyone was in a similar situation to mine at any point in their treatment.  I know that my situation is a little different.  I have done very well on Gleevec from a response standpoint (MMR within 11 months and pretty much CMR ever since, with bouncing in and out of detectable).  Side effect wise I was actually doing fairly well too, no stomach issues or anything like that, but the myalgia has gotten so bad I can barely get out of bed in the morning.  So for better or worse I am making the change to Sprycel in the hopes of gaining some quality of life.  I'll note that if the muscle pain was stable I would likely ride it out as I have so far, but it is progressively getting worse, that is what is pushing me to try something else.

I'm trying to get an idea of what to expect.  I know PE and all that is something to watch for.  I know I should expect headaches at first.  The main thing I am worried about is a sudden drop in my counts which have been very stable and mostly in normal range.  I know when leukemia burden is high and Sprycel treatment begins it can wipe out cells very quickly and cause suppression.  I am trying to get a sense of what happens when someone who is essentially doing alright takes Sprycel and how likely it will be that I develop myelo suppression.  Of course we all respond differently but trying to get an idea nonetheless.  I really wish my doctor would start me on a lower dosage, I think it is nuts that I am starting at 100mg given where I am, but she is not willing to go lower dosage unless there is a reason.  My thinking was start out low and ramp up if response is slipping, she wants to start high and come down if side effects are problematic.

[scuba]

"I think it is nuts that I am starting at 100mg given where I am ..."

Gary - I think it is nuts for you to start out at 100mg given where you are. You are PCRu. You have no disease burden to speak. The purpose of your switch is to eliminate side affects from Gleevec and give you maintenance of CML or even help you get off the drug if you can stay PCRU for a few years. 100mg. is too high. Myelosuppression is a real issue with Sprycel.

For comparison - I was NEVER started on 100mg. and I had 100% FISH at that time.  I was started first on 70mg. and then had to drop to 20mg. because of suppression issues and I have been there ever since. AND on 20mg. my FISH went to zero and my PCR fell 3 log in 7 months. I am borderline PCRu right now. If 20mg. can get me to PCRU - then certainly it can keep someone there. I realize everyone is different. Dr. Cortes won't even let me increase my dose (to 40mg.) so I can push it further.

In my opinion - it is nuts to start someone at 100mg. when the disease has already been checked tremendously and invite new side affects to replace old side affects. There is no reason why your doctor could not start you at 20mg. and then check PCRu at 3 months or even six weeks to see if you maintain. Chances are you will still be PCRu - and I believe, your levels will even drop further (way below detection - 4.5 log down). But even if they didn't - even if your levels went up (and they would have to go up 1/2 to 1 log to be significant), you can always increase dose to 40mg. or to 70mg. Perhaps your doctor would be willing to call Dr. Cortes for an opinion (or email) to give her comfort in her prescription. Liability is a real concern for doctor's. It is much easier for them to just follow NCCN guidelines and avoid the hassle of customized treatment.

You have time to try the lower dose approach and see what happens. Imagine if you just stopped taking any drug. It would be weeks and weeks before your body would register the change and you would have plenty of time to just go back to what you were doing.

You have expressed a lot of concern and anxiety over this and so it may not be comfortable for you to deviate from your doctor's recommendation. Only you can make that decision. For me - it's a no brainer, but that's just me. In the end, you have to follow your doctor or else likely have to find a new doctor.

(**It is possible that my 20mg dose is effective because I also take a lot of Curcumin. The jury is out on this. Dr. Cortes has told me that he has many patients doing just fine on 20mg. I have no idea what "just fine" means)

[simone4]

Lucky, have you considered lowering your Gleevec dosage to 300mg.  I had to do

this within 6 months of starting G.  Maybe it will help your fatigue. I  have been PCRU

the last two PCR's.  However, my experience is the longer I am on this drug, and I

assume it would be true no matter what TKI I am on, fatigue has worsened. I just had

to accept that.  Harsh I know, but switching may not help me at all.  Only a new

set of problems and the horrible angst that goes along with that.

Good luck in this decision.  Maybe a lesser dosage of G. might help.

Simone

[CallMeLucky]

Doctor not willing to lower dosage of Gleevec and since I hover right around CMR I don't think 300mg is the best choice.  Also to clarify the fatigue is not the issue.  I have fatigue, but I can live with it, it is the muscle problems.  I am considerably weaker than when I was diagnosed.  I was never supper strong, but I had decent muscle definition and ability to lift.  I could squat my body weight + (at least 150lbs).  I can barely squat an empty bar today (45lbs).  I have trouble standing upright due to the muscle pain in my back.  My arms and legs feel like jelly most of the time.  My issue falls more under Myalgia than fatigue.  I'm not really expecting the fatigue to be any different on Sprycel, but I have been told at the hospital that the change to Sprycel should alleviate the muscle problems.  Just trying to figure out what the trade off is going to be.  I'm expecting my platelets to drop, but they are pretty good on Gleevec 150-190 on most CBC.  My WBC is right at 4 so I don't know what is going to happen there. 

[Sneezy12]

Have you been evaluated for other causes of Myalgia by a Neurologist or for an Autuimmune Disease? Regards, Frank

[CallMeLucky]

In the year prior to my diagnosis I was having acute severe nerve pain.  I was tested by neuro, MRI and found nothing.  I wound up with infectious disease dr who said I had Epstein Barr and it would burn out within 6 mo.  He couldn't say if it was the cause of the nerve pain, but he thought it was.  It cleared up when he said it would and I felt fine.  I began to exercise a lot, was building muscle and feeling great, within a year I went for a physical and found CML.  at the time I felt great no muscle issues at all.  Started Gleevec and did ok for first 6 mo or so then it started.  I had some other side effects like fatigue early on but when the muscle started it just kept getting worse over time.  The exercise slowed down to the point where I can't do it anymore.  I turn 40 next month, I feel much older.  I will be stopping Gleevec in another couple of weeks.  I am going to be off it for about 10 days while on vacation.  Hopefully I will see some relief, I know side effects do not go away that fast, but any relief may be a sign that it is the Gleevec, I just can't see it being anything else.  I will start Sprycel when I get back and hope for the best.  I know there is no free ride with this, but hopefully I can feel better than I do now.

[BY196]

Hi Lucky:

I was almost, but not quite, at MMR with Gleevec when I switched to Sprycel in February of this year for side effect reasons. I too was worried about myelosuppression (I am also on 100 mg) and never had any problems. My counts stayed almost exactly where they had stabilized on Gleevec. One caution: although other side effects have improved a lot on Sprycel--brain fog, GI and fatigue--I do still deal with musculoskeletal pain. To some extent it seems to correspond to my thyroid levels, for which I am always struggling to achieve equilibrium. But some amount of myalgia is always present. My sister who is a doctor wants me to go on Cymbalta to see if that will help, but I'm skeptical of introducing another med at this point.

Good luck--

Beth