38 replies to this topic

[Rissa]

I haven't posted in a very long time, but now I have a question.  So my side effects lessened after my first 4 months on gleevec back in 2011.  Things kind of smoothed out for me and I just had occasional cramping in my hands and feet.  I started noticing significant fatigue in 2015.  I just dealt with it figuring it was just the way things are with gleevec.  Last year my husband said I snored a lot so I had a sleep study done and I've been using a cpap for the last 7 months.  That helped some with the fatigue.  In the last year I've had more cramping and the last 3 months it's become progressively worse.  I wake up every night now with severe leg cramps that seem to start in my calf and extend through my foot and up the back of my thigh.  I also have periodic heat in the back of my thighs.  The cramping is not limited to my legs.  I get cramps in my throat, sides, hands, arms, pretty much everywhere.  My balance and memory are both off.  I've been tested for thyroid issues, lyme disease, and diabetes and all came out negative.  My CRP-C Reactive protein is high (1.85) which is like a catch-all for inflammation, so my primary care doctor is sending me to see a rheumatologist next week.  I guess what I want to know is if there is anyone on this board that has experienced these issues.  Did you end up with a diagnosis of arthritis, rheumatoid arthritis, MS, something else?  I take magnesium, potassium, iron, B-12, multi-B, and Vitamin D.  So I think I have my bases covered as far as treating the usual CML cramps.  This situation just feels different.

[Trey]

The cramping sounds like a Gleevec issue.  It is the one issue that has been the worst for me.  Minerals helped, but I still got awful cramps all over my body like you are having.  After 11 years I finally gave up on Gleevec and went to Sprycel last month.  The cramps are now gone.

 

I also had balance issues on higher dose Gleevec, but that got better when I went to half dosage many years ago. 

 

Increased CRP has not been tied directly to Gleevec.  Yours is low-moderate range so not that bad.  And it can change daily due to several factors, so have it checked again a few times to get an average of results.

[gerry]

Okay Trey - why are you now on Sprycel and what was your starting dosage level since you have been PCRU for so long? Was it due to the muscle cramps?
 

[scuba]

Trey - Echoing Gerry, what dose Sprycel are you taking?

 

You really switched so you can live longer - eh?

http://www.kurzweila...rch-mayo-clinic

[Buzzm1]

For Trey, based on 10 years of contiguous PCRU, anything more than Sprycel 20mg would be overkill.

[Pin]

Trey, say whaaaaat?

[scuba]

For Trey, based on 10 years of contiguous PCRU, anything more than Sprycel 20mg would be overkill.

 

Trey is a strong candidate for cessation. Chances are he's functionally cured.

But he has to be comfortable with not taking any TKI. 

[Gail's]

For Trey, based on 10 years of contiguous PCRU, anything more than Sprycel 20mg would be overkill.

Buzz, I'm looking for research on dropping to 20 mg Sprycel. Do you have any links? Lots out about using 50 mg but I need to convince my onc to let me drop to 20 mg.

[Buzzm1]

Buzz, I'm looking for research on dropping to 20 mg Sprycel. Do you have any links? Lots out about using 50 mg but I need to convince my onc to let me drop to 20 mg.

Gail, I haven't done any research on taking 20mg Sprycel.  What I do know is that we should take the least amount of TKI necessary to control our CML, which means that if our CML has been at a low level, or undetectable, for a sustained period of time, this justifies a lower dosage.  It doesn't require a high dosage of TKI to maintain, or control, a low, or undetectable, CML level.  It's good to see more and more of us aggressively lowering our tki dosage.  The less tki we consume, the better.  The lower our dosage, the lower the probability of experiencing side-effects, although we can still experience the same side-effects even at lowered dosage.  If you get a chance post your CML history in your signature.  For some, who have been bouncing in and out, and around, PCRU, on a higher dosage for a period of time, lowering their dosage isn't likely to have a negative effect on their readings, but it will lessen the probability, and perhaps the severity, of side-effects.  Hindsight being close to 20/20, I only wish  I had started my own dosage reduction much earlier; perhaps I could have alleviated some of my own pain and suffering.  

[Rissa]

Trey, thanks for the input.

[Trey]

Dearest Thread Jumpers,

 

I tried cessation to end the muscle cramps and became detectable within 6 months, then got close to MMR levels so I restarted Gleevec 400mg and went back down quickly and should be back to PCRU by now.  This was part of why I changed to Sprycel 20mg daily, since Gleevec did not provide cessation success even after 11 years.  But I also wanted to end the cramps, and maybe change over to another TKI to switch overall effects of the drug. 

 

I did not want to discourage cessation believers with my story.  It is still fuzzy science and no one knows when it will work or why.

[Red Cross Kirk]

Trey, since the thread has already been jumped....

 

What does your prescribing physician think about the 20mg dose?  For my own situation, I've been wondering if changing to a low dose of Sprycel would push me into PCRU.

[scuba]

Trey, since the thread has already been jumped....

 

What does your prescribing physician think about the 20mg dose?  For my own situation, I've been wondering if changing to a low dose of Sprycel would push me into PCRU.

 

Red Cross Kirk,

 

I am on 20mg Sprycel dose right now. It was prescribed to me by Dr. Jorge Cortes (M.D. Anderson) who is an expert in the field. He told me that in his clinical study work, Sprycel has proven to be very potent at low dose and that full dose Sprycel (100mg.) may be too high given the side effects profile (pleural effusion being top). He felt that as long as a patient is in chronic phase, dose experimentation is very safe. He had no concern prescribing my low dose. I'm thankful for it.

 

In my case, I am borderline PCRU at 20mg. I was on 20mg before I even achieved CCyR - The low dose was sufficient to trend my response downward and so I was prescribed to stay on it.

 

I did try cessation even though not PCRU - but over nine months, my PCR zig zagged upward although I never lost MMR. I decided to resume 20mg. to verify that I could reverse the trend. It reversed as expected. I'll try cessation again when PCRU returns for sure (i.e. not borderline like I am now).

 

Trey - Much sorrow that cessation did not work for you. It's possible that switching to Sprycel may impact your bone marrow in a way to enable you to try cessation again. I had hoped you would be truly cured given your long PCRU status. Hopefully low dose Sprycel will be sufficient. No more nausea and you can take Sprycel on an empty stomach. At 20mg.you should not feel any side effects. All the best.

 

(sorry for thread hijack)

[Trey]

What does your prescribing physician think about the 20mg dose?  For my own situation, I've been wondering if changing to a low dose of Sprycel would push me into PCRU.

 

Mine wanted me to start higher but I would not, so we are checking the PCR on short intervals to see how the 20mg works.  Will do a first PCR for Sprycel in February to make sure 20mg is enough.

[scuba]

Hey Scuba

How much better are you feeling on a low dose of Sprycel vs. the dose that you were taking prior to cessation?

Thanks

 

I have zero side effects that I can feel at 20mg dose. The highest dose of Sprycel I ever had was 70mg and that lasted only one week. I did have the expected headache initially which faded quickly, but I also had severe myelosuppression on 70mg and had to stop for about 3 months in order for my blood system to recover. When I restarted it was at 20mg and I have been at that level ever since.

 

On 20mg., I have no sensation that I am taking any drug whatsoever. Even though my red blood levels are still suppressed (barely normal), I don't feel anemic or lack of energy. Traditional diet and exercise I think better explains that I feel well. 

[scuba]

Mine wanted me to start higher but I would not, so we are checking the PCR on short intervals to see how the 20mg works.  Will do a first PCR for Sprycel in February to make sure 20mg is enough.

 

Trey - You should also have a complete blood count taken to verify your dose is not suppressing white blood counts initially. 

[thatguy]

So how frequently are you testing on the 20 MG dose, Trey?

[jjg]

Trey sorry your cessation didn't work out. Mine didn't either but it was in the context of pregnancy and I hadn't "served" the PCRU time that you had.

I get why you didn't share it at the time but it is good to hear you gave it a go. Hope Sprycel treats you well... at minimum dosage

 

Rissa, apologies for thread jump. I do have occasional balance issues on tasigna (don't remember them on gleevec). My biggest trigger for them is swimming backstroke but other then sticking to freestyle I don't have any solutions.

[Buzzm1]

Trey, may I ask if you tested monthly during cessation? and if so, when was the earliest indication that you had lost PCRU

[M.A.]

Mr Tee

 

Sorry to everybody (including Rissa!) for thread jumping... but you asked about going from higher dose to lower dose Sprycel and I thought I would chime in with my own experience in case it's helpful.

 

I have lowered my Sprycel dose twice quite early in treatment (see my signature below). I had chest pains at night on 100mg/day and these resolved when I went to 75mg Sprycel. Fatigue and pimples/long-lasting skin eruptions on scalp, head and chest improved on 50mg/day. The biggest difference for me is that on 100mg and 75mg I had stomach pain that was extremely uncomfortable and this is completely gone on 50mg/day. My blood counts and liver function tests have also improved (I had myelosuppression).

 

I still have some fatigue however,  and since starting Sprycel I have developed stiffness/weakness in calf muscles and low blood pressure and I am now iron deficient (low ferritin) and continue to have mildly raised liver enzymes.

 

I am not recommending my approach to others. I have had many, many sleepless nights because I have done my own dose reduction without the approval of my haematologists. I would have so loved their support as I've found it terrifying at times, but they were both adamant that I had to stay on 100mg until I had at least 2 years PCRU.

 

The main reasons I thought it was worth trying to at least see if a lower dose of Sprycel would work for me are:

 

1. My creatinine increased and eGFR decreased after going onto Sprycel. I also developed proteinuria. I had no protein in my urine for over three years prior to being diagnosed with CML and starting Sprycel. (Disclaimer: I did however have a pre-existing mild, incredibly stable form of diabetic nephropathy (kidney disease due to diabetes)) but it had been very stable for two decades and had actually improved and appeared to have reversed completely for the three years prior to CML (I had no protien/albumin in my urine and had never before had abnormal eGFR or creatinine). I found it very distressing that the haematologists seemed unconcerned with this, in fact it was only me who brought it up, but they insisted I should remain on the 100mg.

 

2. I have a 36 year history of being very sensitive to medications, for example, I get a warning on my insulin pump that my insulin dose is way lower than the doses generally used, but a very tiny amount of insulin controls my diabetes. Same with my enalapril dose (1.25mg/day)

 

3. I weigh 50kg

 

4. I figure after 36 years of type one diabetes I already have some damage to my microcirculatory system so need to be careful taking anything that could damage my system further.

 

I get my next BCR/ABL test in a couple of weeks and I'm crossing my fingers that 50mg/day Sprycel will continue to work for me.

 

Thanks so much to Trey, Scuba, Cleoclans, Kat73, Hannibellimo... all of you ... for posting your experiences. As we don't have much published research data yet on patients' dose reduction experiences and real lived experience of side effects, this forum is worth its weight in gold.