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PE symptoms


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#1 CallMeLucky

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Posted 01 December 2012 - 05:55 PM

I want to ask people who have had PE on Sprycel what symptoms they had early on.

I'm taking 100mg daily for about two weeks now.  For the most part I have felt fine.  I flew on an airplane this morning and after landing I have tightness in my chest.  Feels mostly like gas and I have been belching a lot, which I typically do not do.  I have no shortness of breath, no cough and it doesn't seem to hurt more when I take a deep breath.  So I am thinking that for the most part this is not a PE but wondered what others experienced in early stage. Seems a bit soon since only on for two weeks.  My concern is that the air pressure in the cabin aggravated something that may have been brewing.

I am supposed to fly back tomorrow and suddenly have slight concern.

Pain is left side only in the upper chest (pectoral area and sternum)

Thanks


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%
 

 


#2 felursus

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Posted 01 December 2012 - 06:08 PM

I'm not on Sprycel (I have AML not CML), but I have had a PE.  It was symptomless.   What made it discovered was the fact that I also developed a DVT (self-diagnosed: I'm a PT).  I was in the hospital at the time (in September) and did a lot of walking, so they didn't believe me at first.  If a PE is small enough it won't cause shortness of breath. I don't know whether Sprycel can cause UGI tract issues - I'm sure some people who are taking it will chime in about that.  I recommend you call your MD and report what happened.  Flying with a PE is not a good idea because of changes in air pressure. 

Good luck!

Karen



#3 Teresabourgeois

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Posted 01 December 2012 - 08:25 PM

I've been on Sprycel for almost two years.  I've had My lungs tapped twice.  I can tell you that I cough so much that everyone around me gets sick of it.  It basically feels like I'm drowning.  Laying down makes things worse.  I can tell when the fluid has returned because i get short of breath.  It's tough to walk and talk at the same time.  So I hope this helps and I hope you don't have PE.

Teresa



#4 Sneezy12

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Posted 01 December 2012 - 08:48 PM

Sounds like GERD. Regards, Frank



#5 Sneezy12

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Posted 01 December 2012 - 08:51 PM

Teresa, have you tried other TKI's? Regards,



#6 acb

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Posted 01 December 2012 - 10:24 PM

I have not had PE but I have had the symptoms you have described several times. I have been on Sprycel since diagnosis, July 2010. For me, it was worse in the beginning and has gotten better over time. It is one of those recurring side effects for me. Usually lasts 3-4 days, goes away for a few weeks or more, and then reappears. In the beginning, it seemed to be more severe and last longer. I asked my onc. about it in the beginning, and they told me to take Tums (which I think I did once or twice but don't bother any more). I did cut Mexican food and pizza out of my diet for a while (since they both seemed to make it worse).

The burping actually helps me to get it to go away. So let it out! Quietly, of course, if possible. :-)  If you are able to find a specific cause and/or a resolution, please share!



#7 CallMeLucky

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Posted 01 December 2012 - 11:09 PM

Thank you for responses.  Teresa I appreciate the way you spelled it out because that is what I thought and that is not what I have, no coughing and laying down seems to help if I lay on my side.

I'll keep an eye on it but it really seems more like gas and belching does relive it a lot.  I read about Jet Bloat which can come from flying where cabin pressure can affect your stomach and cause these kind of symptoms.  I'm going to keep a close eye on it.


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%
 

 


#8 Tedsey

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Posted 01 December 2012 - 11:11 PM

I had symptoms, a cough that wouldn't go away, wheezing, maybe a little shortness of breath.  Had an x-ray and it was clear.  I have been on Sprycel for 2.5 years now.  Sometimes I feel weird after air travel.  My trips are mostly overseas, so they are very long.  Therefore, who wouldn't feel a little funky on a long ride?  However, I wouldn't discount being in a pressurized cabin in close proximity to others.  Hopefully you are not coming down with something and it will go away.

Take care. 



#9 super99

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Posted 01 December 2012 - 11:54 PM

I've been on Sprycel for 5 months. I had a tightness in my chest (feel like a heartburn) 5 weeks after taking Sprycel (and after a 30-hour flight). I had headache for the first 5 weeks and it went away. After having a tightness, I've start feeling fatigue and having acne on face, hairlines, neck, ear, chest, back, chicken bumps on arms and legs, hair turns gray. The tightness went away but it has returned  last week.  Laying down makes things worse. I hope this helps and hope you don't have PE. Good luck with your flight.

Super






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