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#1 cml-wife


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Posted 16 August 2011 - 01:57 AM

Husband was taken off Sprycel due to peeling skin on his hands... they said it was or *could be* toxicity. But since it kept depressing his WBC and his platelets anyway, and they had to keep taking him off it, they decided to just switch him to gleevec instead of finding out if it really WAS Sprycel Toxicity.

The not so good news... he was diagnosed in March. Started Sprycel in April. Has probably been off the meds as much as he was on the meds since then. He had the blood test done last week and his BCR-ABL was still 95%. He will have a cbc and chem panel done this week and if his levels are OK, he can start the gleevec. Please send good thoughts/prayers/anything!!

And I would appreciate any thoughts on this matter. Anyone have an experience like this?

#2 LoriM58


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Posted 16 August 2011 - 06:12 AM

I was dx in Feb and trying to figure it out myself.   Sorry I don't have any thoughts..... but will definitely say a prayer.


#3 nathaliece


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Posted 16 August 2011 - 06:29 AM

I don't have any experience with Sprycel but will also keep you and your husband in my prayers.  I was dx in 11/10 and have been on Gleevec since Thanksgiving.  After about 6 months (and after splitting the 400mg into two doses of 200mg), the side effects have become fairly tolerable.  Hang in there!

#4 scuba


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Posted 16 August 2011 - 07:55 AM

Sorry to hear about your husbands trials ...

But I would stay on Sprycel - just a lower doseage.  I went through what your husband is going through.  My cytogenetics stayed at 100% with severe myelosuppression (low wbc's, platelets, etc.).  I started with Gleevec over a year ago - same problem, but slower motion (Gleevec took longer to do what Sprycel did in a fraction of the time).

The key is to get a balance between the drug, the body's response and re-population of normal cells.  Most important is having the drug in your husbands system every day so that leukemic cells can get killed.  Over time (months and months) the body will adapt to producing normal cells unaffected by the Sprycel while the leukemic load drops.  In my case it took 7 months before I was stable enough (myelosuppression) to resume Sprycel at 20mg.  (1/5th the normal dose).  And when I did resume, my WBC's dropped again, but not as much.  I was able to stay above 0.5 ANC and stay on the drug.  In just over two months being able to stay on the drug - my Leukemic counts began to plummet.

Sprycel is a POWERFUL drug compared with Gleevec.  It destroys Leukemia higher up in the cell line.  For those who can tolerate it - it drives CML into remission much faster.

In just over two months I went from PCR = 55% to PCR = 0.59%.  My FISH = Zero.  And as important, my WBC's are climbing.

I am not a doctor, biochemist or Trey.  I recommend however that your husband stick with Sprycel a bit longer at a lower doseage - and go on and off the drug to manage the myelosuppression until his body re-balances.  I have confidence it will.  It just takes time.  I went on and off Sprycel twice - and now it's steady - low dose.  One BIG advantage of low dose - low side affects.  I have none that I can detect.  Maybe I don't tan as easy as I use to when diving.  It's possible your husbands skin issues will go away on a lower dose.

(p.s. I do take Curcumin 8grams equivalent along with the sprycel.  There is evidence that Curcumin augments the effects of Sprycel.  It is entirely possible that Curcumin + low dose Sprycel are why my counts are dropping fast.  It could also be just the Sprycel itself - but Dr. Cortes has not seen such a rapid drop using low dose Sprycel.  He uses low dose sprycel in his patients to condition the body (myelosuppression) to get use to the drug in anticipation of increasing the dose over time.  In my case he has chosen to keep me at 20mg.  because I am getting a response.  Cucumin is good for the body regardless so no harm in my view)

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein


Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.


2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#5 Trey


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Posted 16 August 2011 - 08:55 AM

It is a difficult process when side effects -- especially low blood counts (myelosuppression) -- won't let someone stay on the drugs enough to get a good response.  If he had a good response to Gleevec, then switching back is certainly an option.  But there was obviously a reason he was switched previously.  Low dose Sprycel is also an option, down to even 20mg per day.  Or even switching to Tasigna, although Tasigna is often hard on the skin.

The most important thing is to get on a drug at some dosage and stay with it.  If his Onc has not been lowering the dosage of Sprycel when re-starting after his breaks, then that is the wrong approach.  If the Onc is unwilling to go to a low dosage, you might want to consider finding a new one.

Myelosuppression is also not viewed equally by all Oncs.  There are a number of folks here living with very low blood counts and still taking the TKI drugs.  Some take cell booster drugs for a while, and some longer term.  It is also possible that his Onc is too quick to stop the drugs based on myelosuppression, but I don't have that info.  The peeling skin may be uncomfortable, but in the broader view he needs to get the leukemic cell counts down.  That must be the number one priority, even if side effects are difficult and painful.  Not a lecture, just a matter of dealing with that which can really harm you first by doing whatever it takes.

So a combination of lower dosage and accepting lower counts may be required.  Possibly add the cell booster drugs.

#6 CallMeLucky


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Posted 16 August 2011 - 11:21 AM

The fact is, as your onc had originally told you, Sprycel is stronger.  Many people start on Gleevec and then switch to Sprycel if Gleevec is not effective for them (although more are starting on Sprycel and Tasigna these days).  Your Dr is doing it in reverse, and the switch to Gleevec may very well be effective.  Gleevec is a great drug and it comes down to which drug works best for the individual.  Plus, the onc already lowered his dose to 50mg Sprycel and he is still having issues.

It is hard to tell what the correct path is (lower Sprycel more - which most Dr.'s probably would not do, or switch to another drug) the fact he has been off the drug so much and not getting any improvement on the leukemia is not so good.  At this point, if it were me, I would be thinking about getting a second opinion.  You have not mentioned if you are dealing with a cancer center / CML specialist or if you are dealing with a general hem/onc.  If you are not seeing a specialist, given your husband's profile, then I think you should.  You fall into that category of people who should be seeing a specialist - he was diagnosed with pretty high counts and now he is having trouble getting on a drug and staying on it.  There is also the issue that the doctor had him on both Hydroxurea and Sprycel at the same time, which Trey had commented on was probably not the best decision as it really hammered the counts so quickly.  If it were me, I would be making calls to the major cancer centers, geting copies of the paper work, and heading out to see a specialist.  If you are alrready seeing a reputable specialist, then you have to make a decision to either trust them and go on the Gleevec, which could be a good option, or seek out another opinion from another specialist (just because they are a specialist doesn't mean they are good or the right one for you).

Sorry you are having trouble.  Sometimes it is a matter of riding it out, but that is hard for us to do as it is a gamble if we opt to ride it out and we are wrong.  As I stated above, I would hedge my bet and get another set of eyes reviewing this case.

Best of luck.....

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#7 cml-wife


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Posted 16 August 2011 - 10:38 PM

Michael, I will tell him about curcumin. I googled it and it looks promising.

They had been lowering his Sprycel dose each time, but the last time was to 50mg, and then they saw the peeling skin on his hands at that dose, they said they thought he was having a toxicity reaction. (I wasn't there, so couldn't question further, and he likely just didn't think to question it) It was then that they decided to try the Gleevec.

Trey, he has only ever been on Sprycel. Did not tried anything else first. They prescribed the Sprycel first as the doc said he was young, strong and healthy so why not go with the strongest first.

Lucky, he's seen 3 different docs. One was through our private insurance. She wasn't a CML specialist but is an oncologist and was great. Our insurance doesn't cover medications, though... so he had to see another doctor at the VA. This doc was actually a seattle cancer care alliance doctor who rotated to the VA. He is our doc close to home, but my husband works out of town and also has another onc at the VA where he is working. He isn't seeing our private doc at all anymore, it was too difficult to coordinate care.

His job requires him to be away from home. He was unable to find a "regular" job close to home. And I couldn't support us on what I make. He was home for 4 months. He felt he had to go to work. Which isn't a huge deal as there is plenty of medical care over there. They just would have liked him to be completely stable before he went. So here we are. I can't go to his visits and raise hell because he's across the country.

He has a blood draw tomorrow, and will be starting the gleevec when the results are in.

Hopefully the Gleevec will be the ticket. If even once he has to be taken off that, I will insist on a second (4th?) opinion.

I HATE this and I know that I shouldn't be having a pity party but holy hell, we are 32 year olds with 4 young daughters and seriously? This just doesn't happen in real life.... feels like a bad dream.

Thank you all. I really appreciate the feedback.

#8 Susan61


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Posted 19 August 2011 - 10:05 PM

I will pray for your husband to do well on the Gleevec.  Gleevec was first choice of treatment when the TKI first came out, and then they started to use Sprycel and Tasigna as first choice.  I can only tell you that I am glad I was able to tolerate the Gleevec and get good results.  I have been on Gleevec for almost 11 years.  If the Gleevec works for him, just tell him to try to deal with the side effects because they do get better with time for most people.

Sometimes you have to switch drugs to get the right result for you.  Not everyone reacts well to the same drug.

I wish him well on the switch.


#9 momruns


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Posted 23 August 2011 - 07:06 PM

First, I wish both of you the best.  I was DX in Feb 2011 and was started right away on Gleevec 400mg/QD.  The side effects began to wear away at me.  My labs stayed stable with my WBC 2.7 to 3.1 and my Hct 29.  So we cut my dose to 300mg/QD after being off for one week.  Well the side effects did return but half as bad.  I work full time as a nurse in the operating room and cannot be tired there (always over 40 hrs a week) so I rest when I can and as for the GI stress I take probontics daily and it took some of the distress away.  I do not know if cutting the dose helped or my body is adjusting to the new lab levels.  I got my BCR lab work monday so I will get those and know alittle more.  Last test I only had a 1.1 log reduction so I am keeping my fingers crossed.

Keep us posted.


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