I saw a pulmonologist today and discovered the cause of my mystery problem. I'd been having problems w/breathing out and what I call "involuntary exhalation". The doc said my right diaphragm is paralyzed - could be from the cancer or damage to the phrenic nerve from pleurodesis etc. He is going to do testing to confirm and also check how much oxygen I'm actually getting. Has anyone ever had a paralyzed diaphragm? If so did it get better?

Have to say in a way it was a relief because I don't like the unknown - now I know what the problem is and it's not in my head.

_________________
Dx NSCLC stage IV - many tiny spots in right lung, pleural effusion Dec. 26, 2005
1/06 begin 6 rounds carbo/taxol/avastin
5/06 NED! until
10/06 two new spots right lung
30 treatments targeted radiation successfully treats spots
12/06-1/07 fluid in right lung, drained twice.
2/07 pleurodesis to seal pleural lining - is successful as I havn't had fluid since
3/07 go on Tarceva, severe rash, but keeps cancer away until
scan 1/08, several new spots still in right lung, nothing elsewhere.
2/08 start carbo/taxol/avastin again - same chemo regimen as doctor thinks it may work again.
4/16 scan shows only one spot in pleura, SUV greatly reduced! Continue on carbo/taxol till next scan.
May 2008 develop extreme shortness of breath - pulmonary embolism. Now off Avastin permanently and giving myself blood thinner shots indefinitely.
Switch to Alimta
6/19 4th round Alimta - PET/CT results. No progression, growth. However 2 areas in lung have higher SUV. But for now will remain on Alimta.
10/27/07 PET CT - 2 spots in lung smaller but several small new spots on liver, possible lymph node near left lung and a spot in lower left pelvis lit up. Switching to Navelbine.

Have never heard of your problem before but sure am glad you have an explanation. I also hate the unknowns. Good luck.
Nina

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[size=75]I am 59 years old. Was diagnosed with adenocarcinoma of the left upper lung in Feb 2003. Have had surgery, chemo (carboplatin and vp16) and radiation therapy on the mediastinum. My first set of scans was done Oct 2003 and were clear. My latest screening was a chest film in Jan 2004...so far I am clear. I have a husband, Chuck, who has been wonderful and two children...each of them has a 4 year old boy.
April 19,2004, clean CT of the chest!
July 16th, 2004 clean MRI of the brain and clean chest xray.
Oct 22, 2004..clean CT/PET...yea!
Feb1, 2005 Clear chest x-ray and MRI of the thorasic and lumbar spine. Well, clear x-ray and almost clear MRI. The actual report sees a blip on the T7 vertebral space. If pain increases we will rescan early, otherwise wait til May, 2005
June 1, 2005..had CT/PET scan and all is still clear. Next scans are scheduled for December.CT/PET combo done on Dec 5, 2005. Still NERD. The word infinitesimal was used to describe my chances of reoccurrence. YEA!
6/14/06 Oncologist released me. Said to have my PCP continue annual checks and x-rays. Its been almost 3 years since any treatment. Yea!
8/7/06 3 1/2 years since any treatment.
12/06-Chest xray reads NED...released from my radiation oncologist. I am suppose to make sure my PCP follows me carefully.
2/8/07 MRI Brain...NED [/size]7/23/07 PET/CT NED
3/18/08 MRI Brain...NED
11/12/11 I am now 67 years old and still NED.

I havent had the experience of a paralyzed diaphram, but I did get a paralyzed vocal cord during the lung surgery I had.

I think there was something I heard during my respritory rehab that they can give you a device to stregthen the diagphram but I can't recall if it was do anything for paralysis or not.

I am sure there will be a few members here that can answer your questions.

Take care,

Wendy

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3/2004 Stage 3a-adeno @ 39yrs
3/2004 Left Lung removed, 21 nodes +, paralyzed left vocal cord
3/2006 - New Mets - Spine T12 & Right ischium bone
1/2008 - New Met Spine t10, Possible thyroid

CHEMO
May-Jun 2004 Cisplatin/VP16, 6 days straight every 3 wks, 3 cycles
Jul-Aug 2004 Taxotere 1X every 3 wks, 3 cycles
Sep-April 05 Iressa trial daily
Jan 06-Jan 07 Avastin ev 3 weeks, tarceva daily, zometa ev 6 weeks
Feb 07-Jan 08 Tarceva daily
Jan 08-Present Avastin ev 3 wks + Tarceva Daily

Radiation May-Jun 04 chest 28 days
Feb 06 Spot radiation X 10 days to spine t12 and pelvis (ischium bone)

Hi MarGre, Yes my right diaphragm is permanently elevated after surgery which most likely was caused by doc nicking my phrenic nerve. That was 8 years ago.

Unfortunately, I've tried all sorts of breathing exercises and it has not gotten better.
My family doc says it will never get better, but I figure that's not a reason to give up. These guys don't know everything.

Interesting, because I have the involuntary breathing too. I noticed it in the hospital after surgery. But mine seems to be more on the inhale than exhale.

They could also do a "sniff" test, but elevated diaphragm is good indication it is paralyzed.

There are a few others here with elevated diaphragms too. Hope this helps to know you are not alone.

Barb

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BAC dx'd Oct 2000, age 46, Stage IB?
upper&middle right lobes resected
12.5 cm tumor with 0.1 mm hilar margin
Carboplatin Nov&Dec 2000
Radiation to lower right lobe Nov&Dec 2000
All CT/PET OK since resection
May 06, 2 stents to right coronary artery

I am so glad you are relieved. Have to admit I chuckled at the title of your post though...we all need a good chuckle though so thanks for that!

Sandra

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See my survival story at http://lungevity.org/l_community/viewtopic.php?t=39390

43 years old at diagnosis, wife and mother of 2 wonderful children (1 of each, 12 and 13).

March 2007-cough that wouldn't clear, gets progressively worse, can't sleep on left side by July 2007
August 2007-cloudy x-ray
Aug 27-finally a CT scan, and hospitalized, 3 litres of fluid on lung. Fluid drained, hospital stay, bronchs, mediastinoscopy, thorascopy. Had been told cancer earlier, not in fluid though. Tests done to confirm staging. Staging confirmed as Stage III A, later changed to III B.
Oct 4-PET scan for radiation planning.
Oct 17-Nov 28-30 radiation treatments
Oct 17 to Jan 11-4 rounds of chemo, cisplatin and etoposide
Jan 28-Ct scan/chest x-ray
Feb 12-doc said re CT scan "results are excellent, could possibly be a complete positive response!" Don't think it gets much better than that. I won't say NED yet....
Mar 18/08-NED!!!!! based on updated CT scan. Small pleural effusion left,difficult to tell, but rest is NED. And also cleared for START, liposome vaccine clinical trial.
April 3-1st day of vaccine, every week for 8 weeks, less frequently after that
-May 8-PET scan results, bone mets!!! Lungs still clear. Begin radiation/chemo planning. Off of clinical trial after 5 treatments.
-May 27 and 30, 2 radiation treatments, 14 greys total
-June 10-July 21-first 3 alimta infusion, also receiving zometa infusions separately
-CT scan results July 21-lungs still clear, back a mess, referred to a neurosurgeon for possible surgery
-Aug 13-1st gemzar infusion (stopped alimta, was intolerant and gemzar thought to be more effective)
Aug 16-MRI as reported pain in right leg, results were probable nerve damage from spine mets
-Aug20-end of first cycle of gemzar. Treatments stopped as was intolerant, too many side effects.
Sept 25-bone scan ordered by pain doc
Oct 3-started Tarceva, 150 mg
Oct 23 PET scan results-progression in spine and left lung with lymph node involvement-CRAP!!!!!
Nov 5-Tarceva down to 125 mg
Jan 20-failed bone cement procedure, pain worse
Jan 23-admitted to hospital for 10 days: full kidney failure, later discovered infection in chest which was lanced, identified dropped foot, off of Tarceva since Jan 20
Mar 31-1st of 10 radiation treatments to the spine
May 12-started navalbine

"Strength does not come from physical capacity. It comes from an indomitable will". -Mahatma Gandhi

"When the going gets tough, the tough get waterproof mascara" (assuming you have eyelashes left after chemo!)

I was told that following bypass heart surgery that I have a paralyzed left diaphragm. My surgery was in January, 2011. This was discovered 2 weeks after the surgery when I returned to the doctor. It is hard to find good information regarding this condition. I have not been able to talk to anyone that has it to find out if they recovered, how long it takes to get better, or if it is going to get better. I am not incapacitated by this, but it has caused some restrictions on what I do. I live in Arkansas and the heat and humidity is very hard to endure now. My surgeon continues to tell me that he thinks it will get better and that he is sure that he did not damage the nerve that controls the diaphragm. There is a surgical procedure but I am not ready to go under the knife again after such a invasive surgery as the bypass was. I wish you well and hopefully we can get better informed through the web.

Hi Kah123, I have lived almost 11 years with this now. I get very short of breath just going up a flight of stairs. Heat, humidity or smoke definitely does not help. I also have trouble walking against a strong wind...it just sucks the breath out of me.

I've tried lots of things including years of yoga breathing exercises....my right diaphragm has not dropped a bit... so it seems permanent.

I think the docs do not like to talk about it. Is your chest numb anywhere? Barb

_________________
BAC dx'd Oct 2000, age 46, Stage IB?
upper&middle right lobes resected
12.5 cm tumor with 0.1 mm hilar margin
Carboplatin Nov&Dec 2000
Radiation to lower right lobe Nov&Dec 2000
All CT/PET OK since resection
May 06, 2 stents to right coronary artery