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Sprycel Side Effects


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#1 pammartin

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Posted 06 December 2011 - 04:34 PM

Ok, most of the regulars have either read something, commented, offered advice, or had several belly laughs about my recent horn growing experience.  At the risk of this conversation going straight to the gutter, I have to address the horn growth further.  Although my 'horn' did dissipate, I am not entirely sure it was the antibiotic that helped it go away.  I stopped taking the Sprycel at the same time, due to low white count/platelets.  So, as I begin my second week of restart on the Sprycel, once again I am having those 'odd feelings' like my head is full, (not sinus symptoms) this is hard to explain, nerve endings are very sensitive on my scalp, and a tingling feeling accompanies the odd symptoms.  My left ear again is affected, but like last time, there is no noted fluid or infection in the ear/inner ear.  I swear I am beginning to grow another horn, the feelings are exactly the same as they were the last time before it became very painful and almost unmanageable.  Explaining it to the oncologist, I received a response of, 'You must have gotten bit."  Well here I go again, and I do not believe I was bitten by something (again).

I have looked up archives, and even searched the Internet, but cannot find anything that relates to this phenomenon.  Any ideas anyone?  I would really appreciate it.

Thanks

Pam



#2 CallMeLucky

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Posted 06 December 2011 - 04:41 PM

I would post this question on http://newcmldrug.com

Jerry Mayfield and a number of the other participants on that board have had extensive experience with Sprycel (as well as the other drugs) and they may be able to give you some additional feedback.  I believe Jerry was one of the first people to take Sprycel and while he is no longer on it (ponatinib now, I think) he knows a lot about it.  Anyway, might be worth a shot.


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

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Posted 06 December 2011 - 05:09 PM

Hi, Pam,

I've been on Sprycel for over 2 years and I seem to have some of the stranger side effects. Many of us feel that our sinuses have been effected negatively by Sprycel. I didn't even know I had sinuses I'd been problem free my entire life until I started Sprycel and now deal with a stuffy nose and stuffy ears on occasion. I even had sinus surgery last year. My onc believes me and agrees that the issues are probably caused by Sprycel because we have no other logical explanation. One of the other interesting phenomanae I developed last year is supraorbital neuralgia. There is a nerve bundle that comes out behind your eyebrow and for some reason that is irritated and wind can cause me pain, hair blowing (getting my hair cut is a real trip sometimes). The pain is not as severe as tri-geminal neuralgia but it can get very sensitive.  This also developed on the left side, the same side as my frontal sinus issue.

I've spoken to a few people on the newcmldrug website and some of them have definitely experienced sinus problems.

Very interesting drug we're taking.

I hope you are pushing your docs to knock your dosage down to 100mg. In my humble opinion it was raised for all the wrong reasons if it was just to bring your platelets down faster. That would probably take care of your low wbc/platelet counts, too, or at least improve them. 140 mg. has a much higher incidence of pleural effusion. As a matter of fact, even 50 mg. of Sprycel taken twice a day (as opposed to 1 - 100 mg. tab) has a higher incidence of pleural effusion. That is one side effect that scares the beejeesus out of me. Just saying...

Good luck!

Pat


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 Judy2

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Posted 06 December 2011 - 05:32 PM

Hi Pam and Pat. I will be starting Sprycel, shortly, just waiting to get it from Bristol-Myers. Horns!!! Just what I need. Sinus symptoms, too. I developed sinus problems in Sept. 2010, it was a symptom of Wegeners, which I was dx with in Feb. 2011. Once the Wegeners was treated the sinus issues went away. I better not get the sinus problems again. If I think I'm anxious now, just wait, if I can't tell the difference between Sprycel side effects and my Wegeners getting worse I'll really be crazy!!!

Callmelucky, did you say your friend was on ponatinub? I thought that wasn't FDA approved yet. The reason I ask is because I really want to try bosutinib but can't as that is not FDA approved yet. I guess I was wondering if there is a way to get a med, if they are not recruiting for clinical trials and it is not FDA approved?

Judy



#5 SB3

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Posted 06 December 2011 - 07:04 PM

How strange that you mention that your left ear was affected. I restarted on Sprycel a week ago after a week's break due to low counts. I had five 100 mg left and finished those before starting on 80 mg (which I've been on for a week now). After about three days back on the drug, I noticed a red, painful bump developed in my left ear. It is almost gone now but it was the weirdest thing. I mentioned it to the doctor but it's hard to tell if it's drug related or something else. Interesting to note that you had similar problems. Fortunately, I have yet to notice any sinus problems.



#6 pammartin

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Posted 06 December 2011 - 08:11 PM

Hi Judy,

Please do not allow my side effects to cause you concern, each one of us has different responses to the meds, and perhaps you will have no problems at all.  Outside of the first week when I began the Sprycel in October, my side effects have been minimal, that first week I had a whale of a headache and some nausea, but then nothing until I started with the tingly pressure and that darn horn, but that was not until I started on the 140 mg Sprycel, and I was also taking 2000 mg of Hydrea at the same time, so lots of powerful drugs at once.  After I stopped the meds due to blood work results, everything did calm down, but I honestly thought it might be from the combination of the drugs, now I am not so sure the Sprycel is at a higher dose than my body can tolerate, after posting this I thought about the feeling and uncomfortableness, it is almost like I have pressure under my skin, that is more predominate on one side of my head than the other.  My horn was hard as a bone piece, and unmovable, but left quite quickly once the meds were taken away.  Also, I was on 1500 mg of amoxicillian, so perhaps that had something to do with the disappearance.  Either way, try not to get too worried, I have read many posts from people who have little or no side effects from Sprycel and actually switch to this drug because they are less than with the other TKI meds. 

Take care

Pam



#7 pammartin

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Posted 06 December 2011 - 08:14 PM

Mine seemed to be spreading, the oncologist really thought I was bitten by something, although I wrote above I disagree, but I have had sinus problems in the past, and this feeling is nothing like that.  It is not sinus pressure, instead more of a constant pain from the left side of my head to my left ear, a tingling, numb. but painful ache.  (I know that makes no sense at all)  I am glad your red horn went away!  Just hoping I don't grow another one!



#8 pammartin

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Posted 06 December 2011 - 08:18 PM

I am seeing both docs between this week and next, and yes I am going to push for lower dose.  I believe they are a bit fearful, I was on the Hydrea alone in the beginning and it did not lower platelets, then white count starting to rise almost daily, took both Sprycel 100 mg and Hydrea 2000 mg and the bottom fell out of my blood work.  (No wonder Trey called the combination of meds a wild card!)  I am also leery of the plural effusion, I have read enough to know (and before taking hematologist warned) that Sprycel is noted for this side effect.

Thanks for the reply!

Pam



#9 pammartin

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Posted 06 December 2011 - 08:20 PM

Lucky, I posted on the site, but have attempted to return several times to view possible answers and link does not work, nor the bookmark I used when on the site.  Any suggestions?

Thanks



#10 CallMeLucky

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Posted 06 December 2011 - 08:57 PM

I saw your post.  At the time I think the site was having some difficulty because the page was loading slowly, but it seems to be fine now.  I think Jerry runs the site from his basement, lol, so it may be a little slow once in a while.  That site doesn't have as much traffic as this one does, but there is a loyal following of experienced patients.  I would give it a day or so and then check back to see if anyone responds.

Here's the link to your post - http://newcmldrug.co...ide-effect.html


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%
 

 


#11 pammartin

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Posted 06 December 2011 - 09:05 PM

Thanks Lucky!  I will check on the post tomorrow.  Have a great evening.



#12 Judy2

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Posted 06 December 2011 - 09:31 PM

Hi Pam. I was half joking, I'm not really opposed to the unicorn look. I figure, it there's a horn to be grown from Sprycel I'm going to get it. I had such a bad rash on Tasigna (my chin as well as the area between my eyebrows were swollen) that my onc. took a picture of my chin. When I said to  him "Don't  people get a rash on Tasigna?" he said "Yes, but I've never seen this before". As for you taking Hydroxyurea and Sprycel at the same time, I was on Hydroxyurea for 3 days but I took myself off before I started  Gleevec. That was some cocktail you were taking. I'll be starting on 50mg of Sprycel, also having a Rituxin Infusion next week for my Wegeners. Hope a horn is the only thing I grow!!!

Judy



#13 pammartin

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Posted 07 December 2011 - 07:34 AM

Best of luck Judy, and remember, Unicorns are supposed to be mythical good luck creatures!  (that could be why my horn was growing at the back of my head, room for another one on the opposite side)



#14 Judy2

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Posted 09 December 2011 - 07:48 PM

Hi Pam,

I sent you a private message.

Judy



#15 pamsouth

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Posted 10 December 2011 - 11:11 AM

Hi Judy2,

The only private message I have from you is dated Nov 25th, 2011.

Pam


PamSouth


#16 pammartin

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Posted 10 December 2011 - 09:03 PM

I have sent you two in the past two days!



#17 Judy2

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Posted 10 December 2011 - 09:35 PM

Hi Pam Martin. I'm so confused. Were you referring to me,Judy, or to Pam South. I sent you, Pam Martin, a private message but I think Pam South thought I was referring to her so she replied to me, then I replied to her reply to me then she replied to me and now I think you are replying to me but you may be replying to her. Who's on first?

Judy



#18 pamsouth

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Posted 10 December 2011 - 10:09 PM

Judy 2, You are so funny!!!


PamSouth


#19 pammartin

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Posted 11 December 2011 - 09:26 PM

Too many darn pams! (sometimes I think that even if I am in the room alone)  I replied to your messages two separate times, but then remembers something about the changes and how we cannot send a private message until we are 'friends'.  so, after we you accept me (many others would run) then perhaps my private messages will get to you!  Who's on first again?  I think I have the back field but not sure.  hehe



#20 Judy2

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Posted 11 December 2011 - 09:57 PM

NO ! NO! NO! I did get your messages, both of them.  I  never said I didn't, it was Pam South who thought I was sending her a private message(when actually I was sending it to you) so she said she didn't get my private message so I tried to send her a private message telling her I didn't send her a private message but couldn't send her the message so she replied to me that she didn't get the message and you replied to me that you sent me 2 messages so I replied to you that it was Pam South who replied to me not me replying to you. SOMEBODY  PLEASE HELP US!!!........and I am renaming one of you.

Judy






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