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Could a Little PE Be OK?


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#1 Tedsey

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Posted 15 October 2012 - 11:21 PM

For a year now, my onc (and I, of course) noticed that I have been wheezing.  I am on 100mg Sprycel.  Is it possible to have a little PE and have that be OK, or have it come and go?  I am now running.  I have not really noticed any issues.  However, today, for the first time, I had some trouble getting air in.  On the return trip I was fine, but didn't run as long.  I chalked up the wheezing to late onset asthma.  Fall is always my worst season for allergies too, but I haven't really been affected for a long time.  I have never had asthma before, but I am sure the air quality where I live is horrible, (Chicago is across the street and we are near O'Hare Airport).  My onc has not wanted to make a big deal out of it.  I am seeing her Nov. 1st and will bring it up again.  The wheezing occasional, and no more since I have been running.  So, I guess it is not PE.  But I was just wondering.

Thanks,

Tedsey 



#2 Guest_billronm_*

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Posted 16 October 2012 - 01:13 AM

Hi Tedsey,

I don't have any breathing problems, and I never had asthma,or allergies, but I've been having some problems with wheezing the last few weeks. It sounds like my chest is talking to me sometimes. I have been very inactive the last several months, and we have goldenrod, and Queen anns lace growing all over the place this year on our property. This has been such a strange year for our weather I really think everything in our environment has changed. I just saw my onc 2 weeks ago and I mentioned it to him. He listened to my chest and lungs and heard nothing.  I'm glad he didn't listen to my brain, he would have heard nothing there either. Since I had pneumonia 3 weeks after dx 5 years ago, every time I get a cold they do an x-ray, I had a chest x-ray 3 months ago and it was fine. I feel we just put so much stress on ourselves that we experience all kinds of strange harmless feelings. I'v been going through that since I was in my twenties,I won't tell you the things I have gone through because I don't want to plant a seed.

  It's really strange you wrote this now because I've been thinking about you a lot these last few days. I know your little ones are just starting school, and wait until you get the surprises they bring home.I have 2 grandsons 7 & 9  They go to a catholic school because the public schools in Erie are just out of control. Anyway my youngest grandson Jess the 7 year old is going to be in a play Nov. 17 and he is going to be a blowfish with allergies! He's been practicing his lines for a week already, which are everytime someone else in the play says the word blowfish he has to sneeze. He's driving my daughter nuts. The best part is HEE_HEE my daughter has to make his costume! I went through that more times then I can remember when my daughter was growing up. Even when the dancing school ordered the costumes her teachers wanted extra sequins etc. which I had to sew on by hand. I wasn't even that good at sewing on buttons I looked it up on the internet and I have a pretty good idea on how to make the costume but I'm going to let her sweat it out a bit.You know how we always say when you grow up you're going to have kids just like you.( You'll get there). So my daughter never wanted a girl because as she got older she knew I was right. Now she's finding out that raising 2 boys is pretty intimidating too. We come from a family of prudes, but she didn't realize it until now.

She thought she was so cool while she was growing up. Now shes the prude!  I love it  I'll have to send you a private message to tell you how they caught her off guard a year ago. Love Billie



#3 Trey

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Posted 16 October 2012 - 08:57 AM

It could be a combination of the PE and seasonal issues (such as fallen leaf mold, which is hard on the lungs).  If the breathing is more difficult when lying down, then it is PE; so try lying down when you have the breathing issue after running.  If it does not affect your breathing significantly when lying down, then a little PE is not so harmful.  But keep monitoring. 



#4 hannibellemo

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Posted 16 October 2012 - 02:31 PM

Teds,

They should be able to see even a little PE on a chest x-ray; mine was quite small when it was discovered. The problem with small PEs is that they have the capacity to grow  into larger, more incapacitating PEs in a very short period of time.

Good advice from Trey - keep monitoring.

Hope it's nothing more than a continuation of this season's very obnoxious allergy season!

Pat


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"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>


#5 CallMeLucky

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Posted 16 October 2012 - 03:33 PM

Chest x-ray would be good to establish baseline and see if there is anything at this point.  Also be aware of PAH.  They say it is very rare but it is something to watch for with Sprycel.

Probably asthma, but keep an 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%
 

 





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