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could use some thoughts on this

iblev
Posts: 13
Joined: Aug 2005

ok.. i feel that i could use some advice or input on my care. Not sure what my next step should be. In July of 05 i was given a diagnosis of non-small cell adenocarcinoma following a thoracentsis. Prior to the thoracentsis, i had a ct csan and the dr said i prolly had pneomonia but no cancer. She scheduled me for a thoracentisis and the fluid came back positive for cancer. went to a well known teaching hospital and every part of my body except my big toe was scanned poked and prodded at least a dozen times. No sign of any tumor, but i still had fluid in the plueral space. I saw a thoratic surgeon while there and he did a video scopic exam, bronoscope... woke up from the surgery and found he had placed a pluerex cather in my side to drain the fluid and then he told me i had 30 days to live, advised not to do chemo, to go home and get my stuff together. I left the hospital that day and went home. I found an oncologist close to where i live and went to see him.. he said he could not give me any promises but he would put me on chemo, and hope that he could extend my life a week at time. I grabbed the chance. Something, i believe it was God, told me that things would be ok. well, went on 4 rounds of chemo.. paclataxel/carbo... three weeks apart. few days of feeling tough but it went pretty good. was able to work full-time and continue to work on my master's degree. Started having some nerve damage from the chemo..(now mind you.) i am having pet and ct scans..throughout this process. All are coming back with no signs of a tumor. No one except the thoractic surgeon has ever said they have seen anything. the surgeon said my pleural space was covered. no sign of this on any of the scans. After my fourth time of chemo, i was placed on tarceva. a chest xray showed that my the pleural space appeared to have a significant amount of scar tissue around the lung. I started having pain and my family said it looked like i was walking crooked. I can't seem to hold my right shoulder up. my oncologist put me on hydrocodone with the tarceva. Well, I think i was hooked on the hydrocodone, i was taking way to much of it and i began to lose alot of weight. about 5 pounds a week. But i was struggling with my breathing, tiredness and just feeling bad. I needed the hydrocodone to get through the day. went for my checkup with my ongologist. ct scan still clean, no changes there, but he was appalled at my weight loss. took me of the hydrocodone, and the tarceva. Put me on hydromorphone 4mg every 3 hours for the pain. He also sceduled me for a endescope to see if the cancer was causing the weight loss, nausea tiredness. endescope came back clear. i have now stablized my weight.. actually feel i gained a couple of pounds. am getting through my day, but where do i go from here? i am sick of the pain... wonder if i really have cancer and question if the pain is from the scar tissue or something else. Oncologist states he does not know what else could be causing the pain. any suggestions?

bugsy127
Posts: 12
Joined: Feb 2006

hi,
If I was you I would get even another opinion. And possibly another if not satisfied. Drs. make mistakes all the time, miss things, misdiagnose, etc.Take a list of questions with you and in the meantime demand something else for the pain until they find the right one that works for you. DON'T BE INTIMIDATED BY THE DRS. This is your life,your body.You were taking too much because it wasn,t working.I am on hydrocodone and oxycotin for my pain. It works. Good luck and God bless!

reinstones1's picture
reinstones1
Posts: 92
Joined: Feb 2006

Hi. First of all, shame on your surgeon (or ANY doctor for that matter) for telling you that you had 30 days to live and telling you not to take chemo. For crying out loud. What an excellent way to support and comfort a patient. I am appalled at his behavior/pessimism.

Second, if the fluid removed via thoracentesis showed evidence of cancer, then yes, you have cancer in the lining of your lung(s). From what i know, it's possible to have cancer in the lining of your lung without having a separate tumor. This is how my mother was diagnosed.

My mother was diagnosed with non-small cell adenocarcinoma in 12/05. We are celebrating the 7 month mark this week. Congratulations to you on reaching one year. That is wonderful, and I hope you are celebrating!

As far as your pain-- cancer very often causes pain. I don't know why on earth your oncologist doesn't know why you're having pain. That's ridiculous.

Shortness of breath-- explainable by the pleural effusion. The collection of fluid around your lung(s) compresses the lung(s) and prevents them from fully expanding. Therefore, it's difficult to get full, productive breaths. My mother's shortness of breath is OBVIOUS.

As far as your weight loss-- that's no mystery either. My mother has lost 25 pounds since starting chemo in January (also with carboplatin and Taxol, every 3 weeks). She is now on 2nd line treatment, with Alimta.

My mother also takes oxycodone for pain, and needs to take it daily. Her cancer is limited to her R lung-- she has 2 small tumors in her lower lung, and malignant pleural effusion.

She WANTS a Pleur-X catheter-- but has not yet received one. Do you still have yours? Do you drain yourself at home? I would really love to know more about your experience with the cathether, so that I can tell my Mom.

Might I suggest that you talk to some other oncologists? Sounds like you might benefit from some new opinions/outlooks. The fact that you're here a year later is evidence that you're doing well overall-- rejoice in that, and talk to some new people.

Good luck to you, and hope to read more of your story in the coming months.

ernrol's picture
ernrol
Posts: 91
Joined: Apr 2006

I have stage IV nsclc. I was told that there was no cure. I was given Tarceva along with my chemo. I have been on Tarceva since August 2005. I have no problems with it as long as I drink plenty of water and exercise regularly; I try to drink an 8oz glass of water for each hour that I am awake. I take a lot of supplements. I took Tarceva from the beginning along with Carboplatin and Taxol, so I am not sure what did the trick, but I have been in remission since November 2005. . If you would like to read my story it is posted on Lance Armstrongs web site Livestrong. Go to this address: http://shareyourstory.livestrong.org
Click on Find a story at left of screen, enter Harold in the first name box, enter Naples in the city box, click on submit, then click on the last name next to Harold. After reading it you will be able to e-mail me.

polean
Posts: 2
Joined: Jul 2006

Wow,no wonder you need answers! I don't know if this will help but my husband was just diagnosed with stage 4 addenocarcinoma (lung cancer). His metastisized to his cheek,neck,addrenal gland, and some suspicious places on his back. He is 44 and asymptomatic. They started chemo last week, taxateer and cystplatin. Outside of fatique he is doing well (back to work). Our 2nd optinion said he would incorporate Avastin between chemo 3 and 4. One thing you might have checked in regards to the scar tissue: T.B. test and Valley Fever test, both will leave scar tissue that mimmics cancer. What part of the world do you live? I hope I have helped, stay in touch, my prayers are with you

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