Jump to content


Photo

Sprycel and strong tremors


  • Please log in to reply
5 replies to this topic

#1 Taylor

Taylor

    Member

  • Members
  • PipPip
  • 17 posts

Posted 07 March 2014 - 09:48 AM

Hi everyone,

I mentioned in another post that I took my first dose of sprycel last night at about 6:30PM

I woke up at 1:30AM feeling really cold, so I rolled closer to my wife and then began to feel weird. Was it a panic attack coming? Then I started shaking really violently as though I was nervous...which happens only at my max (like when I went to the ER for my first a-fib attack). But mentally I didn't feel that nervous.

My shaking got really strong and woke up my wife. We thought maybe I was really cold. Then I hopped on here and saw Pat (hannibellemo) mention an episode of shaking and then nausea/vomiting the first dose, then settling down. I thought "huh! That's odd."  A few minutes later an amazingly strong and quick wave of nausea came upon me, my wife brought è a trash can, and I had some strong dry heaves. Then, just like Pat, things started to settle down and I stopped shaking within a minute.

So, anyone else have that happen when starting sprycel? Hoping it's just a one-time deal... I couldn't fall asleep till 4:30am because of some adrenaline that built up, so I'm taking the day off (good thing it's going to be a beautiful day). But I can't do that every day.



#2 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 07 March 2014 - 11:13 PM

Adjusting to these medications can be rough, the key is if it passes.  Give it some time and it should settle down.  Hope you feel better soon.


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%
 

 


#3 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 08 March 2014 - 07:40 AM

Hi, Taylor,

Yep, sounds very similsr to my experience.  I had those tremors, without the vomiting, for several weeks. They lessened in intensity as time went on but I could generally expect them around 11:00 p.m. or so every night. I wish I could remember what time of day I was taking my dose - I think it was with dinner. I had a bunch of little side effect that were bothersome but that first night was one for the record books.

Good luck and feel free to contact me for spport if you want to.

Pat

P.S. Here's a link to my first post after starting Sprycel   http://http://commun...art=15&tstart=0


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#4 winespritzer

winespritzer

    Advanced Member

  • Members
  • PipPipPip
  • 101 posts

Posted 08 March 2014 - 05:24 PM

Hi!

I took my first dose of Sprycel on Jan 24th and remember shivering with rattling teeth from chills. That still happens to me still every now and then. Thus far all of the side effects seem to come and go. 

Am wondering if the body self corrects the white blood and platelet counts back to normal over time.

Also does anyone have liver difficulties? Mine needs monitoring and I've only been on 100mg for a little over a month. I just bought milk thistle tea to keep myself hopeful!

Am grateful  to everyone who shares on this site.  It definitely makes me feel less alone in this new world.

I considered returning to part time work with a 90 minute commute in each direction but my twice daily naps made me realize I'm not 100% spiffy yet.

Best,

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#5 Trey

Trey

    Advanced Member

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

Posted 09 March 2014 - 10:31 AM

It is most likely the thyroid responding to the drug change, which will probably self-correct over a couple months.  All TKIs can confuse the thyroid, resulting in a raft of side effects such as chills, brain fog, skin issues, hair loss, etc.  It is likely more of an issue than has been addressed by researchers.  But the good news is the body can adjust.

http://www.foxnews.c...-working-right/



#6 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 09 March 2014 - 05:03 PM

Interesting, Trey, I never put the two of them together; it makes sense though. I remember feeling cold for most of that first winter I was on Sprycel.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users