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New member with lots of questions, please help


RichardR

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My name is Richard, I am 67 yo. (I had a major stroke at 50yo, and fought hard to walk again) I was diagnosed on 7/10/09 with NSCLC-large cell, Stage IV. Tumor size on left lung 5.3x4cm, tumor size at L3 unknown. First visit to Oncology Dr. I was told NO Golf as tumor on spine had damaged bone structure. On 7/13/09 (after biopsy) Dr. told me he would cure me and fix my back so I can play golf again. He said NO surgery, and ordered chemo (taxotere, paraplatin and avastin) with radiation in 3 cycles ie. chemo, chemo, radiation, PET. First treatment was on 7/16/09. Yesterday, 8/7/09, Dr. told me he couldn't fix my back and once the cancer was gone I would just have to take my chances and play golf "as is" he also stated that he was not going to give me any radiation. I'm extremely concerned ....should I be?

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I don't know much about treatment options for large cell, but you've come to the right place and I'm sure there will be people along soon who know much more than I -- but I do know I would be getting a second opinion right away, even a third etc. if needed until you know as much as possible.

Will keep you in my prayers.

Diane

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Hi Richard (are you logging on as Teresa intentionally? We get confused easily.)

I'm not familiar with large cell either. (edit - duh, here. Large cell = non-small cell, just like my dx!) But typically, Stage IV cancer is not curable. That is not to say it can't be treated and that a prolonged survival with a good quality of life isn't possible. If you read survivors stories here, it does happen. I am trying to read between the lines - it sounds like your oncologist is less than a good communicator. But I am guessing that they are seeing a reduction in tumor size in response to the chemo - that is a great thing. Maybe this applies to the tumor on the spine as well as in the lung? Have you had some diagnostic tests since starting treatment?

I would ask him to sit down and explain why his decisions have changed over the course of dx and treatment. If he can't give you an answer that makes some sense, I would look for a second opinion. Might do that anyway. You might also check in with Dr. West on the CancerGrace.org website.

How are you doing with chemo? Any pain with the spine that might be helped with radiation?

Wishing you well.

Stephanie

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Hy husband also has non small cell andnocarcinoma stage 4 and we were told radiation was not an option either. When I asked why, the onc doc just shook his head and said we don't do radiation if it's past stage 3. I too still have questions as to why not myself. Good luck to you and keep us updated on your journey.

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Hi, Richard, welcome to the group. I don't recall corresponding with anyone on the board with large cell NSCLC (mine is adenocarcinoma, the most common type), so I can't really help you with any good information. But if you haven't done so already, I highly recommend that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here.

I'm taking the liberty to move this thread to the "Introduce Yourself" forum, where you should get more responses. The "My Story" forum is mainly intended as a repository for detailed personal histories that can be linked to from other posts, especially from the signature/profile section at the bottom of a message, rather than as a place for a lot of back-and-forth discussion. Of course you wouldn't have known that unless you'd come across the one place on the site which has words to that effect... :lol: Best wishes and Aloha,

Ned

P.S. I now see you've already posted on GRACE and got a couple of responses. I usually check there first but didn't today.

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Welcome Richard. I don't have more info to offer except to say I hope you got a reply from Dr West by now. He was a goodsend to me in the year following my dx. I was at one of the best facilities in FL but didn't always formulate my questions in time to address them with my onc. Without insurance, I couldn't afford a second opinion. Please keep us posted. Once you show up on this people, people hook in and care.

Judy in Key West

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Hi Richard,

Sorry you had the need to find us, but I'm sure you'll find a lot of information and support here.

I have a friend (from my In Person Lung Cancer Support Group) who also was diagnosed with Non Small Cell Large Cell Cancer. She did radiation and VP-16 & Cisplatin as her chemo. This was 9-1/2 years ago and she is still going strong today and is over 70 years young. She hasn't had chemo or radiation for over 8 years now and the tumors have all shurnk and are not active. She gets checkups every 6 months, but so far she's still Stable. :D

The kind of cancer you have is treated like most of the non-small cell types of cancer. It's just what the doctor may feel you can handle or what you can't. It's kind of a crap shoot for all of us as to what will work and what may not. Some chemo's are more toxic then others and with you having had a stroke, I am sure they are very careful as to how they will treat you.

Just remember this can be treated, but as for a cure.....well, those of us living with lung cancer, never say never but we know stable and NED (no evidence of disease) is a good thing in the world of lung cancer.

Stay positive, and I hope you'll beable to golf again one day soon. Just never give up hope and never say never. Lung cancer is not an easy fight, but it's doable. :wink:

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Hi Richard,

In January, 2007 My mom was diagnosed with NSCLC with mets to the spine. The very first thing they did for her was radiation to relieve the back pain she was experiencing. Radiation to the bones like that is gnereally not considered curative, but is done to reclieve pain. She has had three rounds because her doctors are adament about keeping her walking. She was in such pain she could hardly walk and now she walks well. I'd get a second opinion and make sure i see a radiation oncologist. Also make sure you are seeing an oncologist not just a pulmonologist. Sometimes doctors who don't specialize in cancer treatment don't know the full range of treatments out there.

Susan

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