Jump to content


Photo

Lowering Sprycel Dosage (20mg) due to low counts


  • Please log in to reply
8 replies to this topic

#1 lopez.troop

lopez.troop

    New Member

  • Members
  • Pip
  • 0 posts

Posted 26 April 2014 - 11:59 PM

Hi. I am still new to all this as I was just diagnosed last month on 3/26/2014 in chronic phase CML. Previously I tried taking the 100 mg Sprycel daily and then every other day and I still developed cytopenia. I saw my hem/onc Friday (4/26) after being off of 100 mg Sprycel for 10 days due to low counts, or as my doc calls it cytopenia. .

So, after ten days off my counts this week were WBC 2.1, HGB 10.3, ANC 1.0, Platelets 134 which is not a big step up from before the break but my platelets and hemoglobin levels came up a bit although they are still on the low end range.

Here is my concern. My onc wants to start me at 20 mg Sprycel this week because he has advised me that I am overly  sensitive to the required 100 mg and even 50 mg so 20 mg seems like the best option right now. He also said that any type of shots of Nupogen to treat the nutropenia and boost white cell production would be out of the question considering I have CML and any type of  boost of white blood cells is risky. Here are my questions:

1. Should I start the 20 mg this week even though my counts are so low already? Or should I ask my doc if we should hold off another week?

2. Has anybody had experience with this type of issue  and what was the outcome? Or have experience taking  a low dose of  20 mg Sprycel?

3.Will a lower dose of Sprycel (20 mg ) lead to disease progression or me not reaching my treatment milestones?

Any feedback is appreciated. Thanks, Jerry



#2 johnny99

johnny99

    New Member

  • Members
  • Pip
  • 0 posts

Posted 27 April 2014 - 06:44 AM

Hi Jerry!

I went through this in the beginning. I started on 100mg and after 3 weeks my platelets fell to 19 (lower bound of normal=150). I had a few weeks break, then again, in total 3 breaks and dose reduced to 50mg. The good news is by 9months counts recovered enough to raise dose back to 100mg. But my response at 9months was FISH 8% / PCR 20%.... so the 50mg had some effect, but not optimal. Now waiting to have my 12months results, hoping I can get to FISH 0% despite all this messing around with breaks and reductions. I really hope no irreversible damage was done.

My recommendations to you would be to stick with the maximum dose your blood counts can handle, especially at this early stage! And don't rely only on your doctor, go see a CML specialist!



#3 mikefromillinois

mikefromillinois

    Advanced Member

  • Members
  • PipPipPip
  • 93 posts

Posted 27 April 2014 - 08:13 AM

Jerry, I too had very low counts in the beginning from the Sprycel (100mg).  I took a break from Sprycel for a couple weeks - my counts rebounded up into the acceptable range - I went back on 100mg and my counts have been okay ever since.  For the first year my numbers were always "low normal" but now after almost three years they are right in the middle normal area.  My own opinion is that beating down the CML in the beginning is the most important thing so I would be uncomfortable taking less than 100mg unless the side effects were absolutely intolerable.  As an aside, I have been PCR undetectable since about six months on 100mg of Sprycel.

Welcome, and best of luck with your treatment!

Mikw



#4 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 27 April 2014 - 10:21 AM

When low counts are an issue it is best to take whatever dosage you an handle, even if it is only 20mg Sprycel.  Some here are on low dosage 20mg Sprycel and it works for them.  Everyone is different in how much drug they need.  You might do well on 20mg, or at least it may keep the CML under good enough control until you can increase it later.  Sometimes it just takes a while for the body to adjust to the drug.  So your Onc's plan to restart at 20mg this week seems reasonable.



#5 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 28 April 2014 - 09:23 PM

Hi Jerry,

I had the same reaction to Sprcyel that you have had - fast drop in counts when taking a higher dose of Sprycel. I started at 70mg and then had to drop to just 20 as you are doing. I have been taking 20mg. Sprycel for more than a year and had a dramatic drop in PCR during that time (I also take 8 grams of Curcumin daily). I am close to PCRU (PCR < 0.01) on that dose. I tried taking 40mg. Sprycel for one 3 month cycle and I had no change in the numbers so I went back to 20mg. No side affects (that I feel) and apart from taking the drug every night, I would not know I had CML. My Oncologist did not want me to take Neupogen for the same reason yours cited. My other blood counts are near normal except RBC's which are still somewhat anemic.


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"


#6 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 05 May 2014 - 12:55 AM

Hi Jerry,

I take only 20 mg a day.  I was on 100 for 2 years, then tried Ponatinib 15mg (yuck) for 6 mo, then back on Sprycel 50 mg for 6 mo, then dropped to 20 mg.  So far have had 3 pcr's, all negative (3 months so far).

I had to lower the dose due to side effects other than low blood counts. 

20 does the trick for me.

Caroline



#7 lopez.troop

lopez.troop

    New Member

  • Members
  • Pip
  • 0 posts

Posted 08 June 2014 - 05:50 PM

Hi everybody, thank so much for sharing your experiences. 20 mg of Sprycel seems to be doing the trick for me. My counts have stabilized and I have my first PCR test next month. Here's to hoping for good news

-Jerry



#8 johnny99

johnny99

    New Member

  • Members
  • Pip
  • 0 posts

Posted 09 June 2014 - 08:33 AM

Hi Jerry! Great to hear you have found a dose your counts can tolerate. As for efficacy, for some people such a low dose is enough to start decreasing the PCR to "safe" levels. I would hope for this, but I wouldn't take it for granted. There is a reason after all why 100mg is the standard dose and not 20mg. Depending on how well you respond, our onc may slowly increase your dose as your normal blood production regenerates and is better able to tolerate the drug, for most people this takes a matter of months. Let us know how it went!

#9 ThePlum

ThePlum

    New Member

  • Members
  • Pip
  • 0 posts

Posted 16 June 2014 - 09:32 AM

I'm on 70mg Sprycel.  I had pleural effusion & peridcardium effusion. I was in the hospital for 3 weeks because my lungs kept filling up despite 2 pumps to drain. Then the fluid was bloody & couldn't figure out why.  Had to have surgery to remove fluid & blood clots from lungs & around my heart.  Oncologist agreed with me that it was cause by the Sprycel.  I was taken off from May to about October of last year.  That's when I was put on the lower dose.  Because of other drugs I am taking, I can only use Sprycel.  Always, always pay attention to side effects, no matter how small it may seem.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users