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Looking for info on pain and pain meds after lung removal.


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I had 2 surgery's for nsclc. 1 on 8/16/03 for removal of lower lobe. And then when pathology found some cancer cells on the bronchial tube they went in on 8/18/03 and completely removed the lung and the bronchial tube and the vein from the heart. They removed 2 pieces of rib and put gortex in. My questions are is there anybody with somewhat similar surgery and how long does the pain last/ how long does the numbness last? I started out when I came home from the hosp. taking 2 percoset (5mgoxycodone/325acetameniphen) every 4 hours. 1 month later went to 1 percoset every 4 hours and then 1 month later to 1/2 percoset every 4-6 hours. Some time have to go to 3 hours. The spot where they took out the ribs is the worst. Have had stomach trouble lately and am taking AcipHex and seems to help. Sure would like to get off the narc. I have tried the other to take 2 extra strength tylenol but it does not cut the pain. Also seems from the xray on the 5th that things are moving to the left in my chest and the right lung is expanding a little. Seems like if I have a lot of gas it sometimes puts pressure on the esophagus and it seems hard to breathe. Any info on any of these things would be appreciated. Sure wish I could find a live lung cancer support group here in Albuquerque.

DougS

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I bet mhutch1366, alias Mary Ann, who joined 9/10/03 could help you. She described her situation as follows

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Hi, I am a 47 year old woman, mother of two, who three years ago last month had a pancoast tumor a little over 13 pounds removed from my thoracic cavity after radiation and chemo -- cisplatin/vp16. I had my surgery at NIH, chemo locally (Rockville) I lost my collarbone, half a lung, five ribs, and a good deal of weight. BUT I am here, and I have survived what was a grim prognosis. There is hope in strange places, all.

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Gee, how about that!

Doug, I had to take prilosec for a year or so to keep a lid on the esophagitis. That was partially due to the chemo and partly the radiation. That part gets better, at least it did for me.

The numbness. Well, dear, when I woke from surgery I had full range of my left arm immediately (18 hrs later). By the time I had hit 48 hours out, I had no feeling at all in my left arm, and it was effectively dead weight.. I had pt for a year, and recovered most of the range of motion. Still some numbness in my fingertips and arm and my shoulder.. Armpit/chest area is absolutely numb. I have spoken to others with small tumors removed, and when they go in the front, the numbness is a consequence of surgery.

Pain -- Dear, I take 30 mg extended release morphine every morning and every evening, and neurontin 300 mg in the morning and 600 at night. That's since the spinal curvature increased last year about this time, putting pressure on the nerves in my neck. I had been able to get down to 15 mg morphine in the morning,and 15 in the evening prior to that. The entire time, I have also been taking 50 mg vioxx every morning, for pain.

Not only does the lung shift, but the rib cage will shift subtly as well. As I am also missing a collarbone, the shift down and in is more pronounced. Many of the anchoring ligaments and tendons are gone.

I am still short of breath at times, mostly in connection with a mild cold or worse. I did smoke for 27 years, and I have some COPD. Also some is obstructive, from the irradiated bronchial tube, and radiation scatter into the resected lobe. Some is restrictive, from the "dead" space my diaphragm has to pull before the lungs starts to expand. I had initially after surgery 'reactive airways', where my breathing would be very bad if I got a cold, and my chest would become very restricted, either down deep or near the bronchial tubes or sometimes both. That's when I'd get the course of prednisone.

Doug, in honestly, you will likely always have some numb spots. You may need to take pain meds for a long time, because when they put you back together with goretex and all, there are nerves cut, and connections that just don't go back to normal, even in the hands of an excellent surgeon.

I amaze myself at what I have to take just to function. I hold a full time job, am a single parent, drive, shop, do laundry, etc etc etc. This is what I have to do to make it through the day. Each year has gotten better than the year before. I am now 3 1/2 years post diagnosis. I actually feel pretty good. THe first year was rough, the second year wasn't so bad, but this year has been pretty good. So things re looking up.

Had the nerves to part of my larynx cut, so I can't sing... but I recovered enough of my hearing that I can listen.

I can't Irish dance, or horseback ride, but I can watch my girls do these things and appreciate it. I can also foot the bill and be the taxi.

Life is pretty darned good for someone who was supposed to be dead.

and Now I have an office with a window!!

I hope you can come to terms with the physical changes that come with survival, and be glad that you live in an age where this is possible.

Some changes are not going away.

Good luck to you.

MaryAnn

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Hey Doug,

Sorry your still having a tough time of it, like you the narc.'s drove me nuts along with the gas. I was on the oxycotin (sp), 600mg every 3 to 4 hours and needed them for a bit over a month. However, we're all not the same and your surgery was a bit more serious than mine was.

Like MaryAnn, I had prilosec for about 6 months and still use over the counter stuff cause still have gas, but not as bad. What you might want to ask for that I had was the oxygen. Although, initally I hesitated in getting it, wanted to tuff it out ( dumb) :? It really did help with the breathing and also think it helped me heal. It was especially good at night when I was trying to sleep. Calmed me down. Also, I had to be real carefull with what I ate, I kind of guess you figured that out though. Lots of puddings, jellos, soups and lite stuff. Small meals and struggled to eat them. I also got the month sores which did'nt last long but were painfull.

Know its tuff Doug, but hang in there it does get better, but it's so d_mn slow.

God bless and get well

Bobmc- NSCLC- stage IIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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i want to thank all of you for your replies and your support. It is very hard for someone with this kind of disease and surgery when there is very little live support. All I was told by my doctors was the chemo would shrink it and then the surgery would cure me. Not told about the removal of the 2 pieces of ribs and not told about the numbness in the back and chest and the numbness in the lower left side and front due to the drain tubes in me. I am getting better month by month. It seems since I have been taking the stomach acid medecine, AcipHex, that the persocet is not working as good. ??? I am a very lucky person for this large tumor to not have spread anywhere according to pet and cat scans. Hope my guardian angel and God continue to bless me and all of you. He has got me through some tough nights.i have had a tough time with the anger and depression and unfornunately have taken a lot of it out on my significant other. God bless this strong women. Would not blame her if she gave up on me. Guess I'll keep taking the percoset for a while yet. Maybe another month and I'll try some tylenol or Ibuprophen. I am in Albuquerque visiting my Children and my 4 Grandson's. My significant other is in Santa Barbara, Ca. with her daughter helping her because she is due with a baby on Dec.2. Does still get lonely during the day with no one around. Have to go back home January 13 for a catscan checkup. Home is in Siren,Wi. and treatment is at the VA medical center in Mpls.,MN. If good checkup in Jan. maybe vacation to Cancun. Hope you all are well. Will check back often. Sure wish I could find lung cancer support group in Albq.

Take Care All and God Bless,

DougS

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Hey there Doug.

I've been around for 26 years now since my left lung was removed. Everything you mentioned will get better, although I still have numbness around my incision. Your right lung will continue expanding relative to the amount in which you exercise it; I had a lung capacity test last year and am at 64% that of a two lunged guy my size. Mind you, I race cross country mountain bikes, and ride fairly heavily three or four times a week with plenty of uphill. Your gas problems will continue - mine make for good party tricks - when I lean to the left, the gas trapped in the portion of my stomach that has shifted up under my heart releases, and I come up with rather large, lengthy belches - medical condition I tell them. Most of my internal stuff has shifted to the left, and the liquid that filled the space made by my vacated lung did not solidify as they said it would, rather, it still sloshes around quite loudly some times as I walk or run. Unfortunately, I can't help you with any sugestions regarding pain; I was quite lucky in that my pain diminished after about three months. Hope everything goes well Doug. Drop me an email or a PM if you have any other questions or just want to compare notes. Take care,

David P.

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