hello everyone - my story so far

[Guest bobp]

I actually came here looking for info on Dave Grant as his name came up the other day on the Acor NSCLC mailing list.

I am 40 years old and have Stage IV NSCLC Adenocarcinoma. I was DX in March of 2001, the original reason I went to the doctor was abdominal pain which was thought to be gall stones. I was sent for an ultrasound to confirm this and during the ultrasound the girl doing it said to me you need to go back to your doctor's office immediately. The ultrasound showed a mass on my right kidney almost as big as the kidney itself. I was then sent for a CT of the chest, abdomen and pelvis, referred to a Urologist and an Oncologist. The Urologist recommended a PET scan, where a small spot in my lung was found, which got me also referred to a Pulmonologist. The consensus opinion of all the doctors at this point was Renal Carcinoma with a very small lung met. No lymph nodes showed up on any of the scans. The recommendation was to remove the kidney, which was done on 4/2/2001. While I was still unconcious following the surgery, the surgeon took my wife aside and told her it was NOT renal cancer and basically he was very sorry. It turned out that the tumor was primarily a Schwannomma, a benign nerve cell tumor of the Adrenal gland, this tumor also had components of Adenocarcinoma. It had never invaded the Kidney at all, just enveloped the top of it. The assumption now was that the lung tumor was the primary.

When I was released from the hospital, I consulted with the Oncologist again and was sent for another CT, a Bone Scan and a Brain MRI, nothing additional was found, just the small lung tumor. We then consulted with a Thoracic Surgeon, who said some studies had been done of removal of a primary lung cancer along with isolated brain or adrenal mets and that some success had been reported. Based on this information I went ahead with a Lobectomy on 5/16/01.

This was followed by a 6 month period od NED, where I tried everything I could to get someone to do chemo. My Oncologist, and the lung cancer specialists at both Roswell Park in Buffalo and Memorial Sloan Kettering in NYC, all assured me that there was no good data to show that chemo would do any good in my circumstance. My oncologist and the doctor at MSKCC both thought I had a chance of being cured, the oncologist at Roswell was much more discouraging, my wife and I were totally unimpressed, basically this doctor's opinion was that the surgery I had was a waste of time. We left there with the opinion that she thought I was going to die anyways and was pissed that she didn't get to use me in some trial.

In November of 2001, I was investigating and Immunotherapy trial with a different doctor at Roswell Park, when the scans showed activity in the mediastinal lymph nodes. This was again followed by the PET, Brain, Bone scan run through, the only hot spots were the lymph nodes in the chest. My Oncologist was participating in a trial of Gemzar/Taxotere versus Gemzar/Cisplatin and Taxotere/Cisplatin, I agreed to participate and was put in the Gemzar/Taxotere arm. After 2 treatments, I had severe flu symptoms and serious dehydration problems, the oncologist and I decided to drop the trial and try a different combo. We picked Gemzar/Cisplatin and I had 6 rounds of that combo. Half way through this I was severely anemic, which delayed a couple treatments, I was given a 2 unit blood transfusion and was put on Epotein. The anemia improved but didn't really clear up until a month after the chemo was complete. CT scans after the treatment showed no change, STABLE. These original lymph nodes have been stable ever since. I had another almost 6 month period od stable NED.

In November last year just prior to my 40th birthday, a followup CT showed possible lymph node involvement in my abdomen, but it was not very conclusive, we decided to give it 8 weeks and rescan to see what was happening. The rescan indicated that it was progression, my wife and I had scheduled to go on a cruise and decided to go ahead with that and start chemo when we returned, so that is what we did. The current chemo regimen is Taxotere as a single agent and the side effects have been minimal and my most recent scan indicates the disease is again stable.

My only real problem through this entire thing has been pain, I am working with my second pain management doctor and we have just yesterday identified probable causes for both of my major pain issues and today I had a Spinal MRI to determine whether we are correct. The one source is a small hernia in my groin, the other we believe to be a slipped disc at T6. At this point neither appears to be related to the cancer and both are treatable. The only other thing that has happened is that I have lost 50 pounds that I needed to lose anyway.

That is my story through today, 26 months since a Stage IV NSCLC diagnosis and the disease is currently stable.

[kimblanchard]

Bob that's a heck of a story, I mean with the misdiagnosis. I'm glad you found us, this is a great group of people. They help pull everything together: questions, answers, crying, laughter. It's all here. Welcome.

[Don Wood]

Bob, thanks for your cancer bio and congrats on your stable condition. It is good to see someone with a testimonial like yours. My wife has the same cancer and she is 7 months out from diagnosis. Best to you. Don

[bobmc]

Hello Bob, my very best to you. and welcome;

That was a " whale of a story "; glad you are NED today and that you found us. I was also dx.'ed about the same time that you were, April of 2001 with stage IIB NSCLC. Sooooo good to be a survivor today.

God bless and be well

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

" absolutely insist on enjoying life today! "

[KatieB]

Welcome bob,

Thank you for your story and I wish you many more years here with us

[Jenny G.]

Welcome Bob,

I'm glad you have joined the group, this is a great place for comfort and sharing. It sounds like you have been through an awful lot these past couple of years, hope things continue to go well for you and look forward to hearing more of your story.

Jenny

[Connie B]

Welcome Bob,

WOW!!! I am sooo very glad to hear all is stable for you!! That is wonderful news, and BY GOLLY you sure deserve it!!

I hope you'll stay with us and share your knowledge and support with us.

We're very glad to have you here. Just sorry you have to be here.

Wram and Gentle Hugs,

[cherry45]

Bob, thanks for sharing that incredible story of your journey. it is very encouraging and although you have been thru so much, it seems you've done so well. I'm glad you are doing well...please keep us posted and welcome, even if it is for this reason that brings us all together. Cherry45

[ginnyd]

Bob,

Welcome, so very glad to hear you are stable. My husband starts Taxotere on Tuesday - 3 infustions - 21 days apart.

Glad to hear also that pain in NOT cancer related.

Keep us posted on how you are doing.

[Marie]

Hi Bob, Welcome. It's great to hear that you are stable. Hang in there.

[Rosanne]

Welcome Bob,

It's great that you are stable after all that. Your story gives us stage IV people hope.

Thanks

Rosanne

[kimblanchard]

Welcome to a great group of very supportive people.

Blessings to you,

Peg

[Guest DaveG]

Bob:

Well you found me. I am not familiar with the story on the ACOR NSCLC site, as I have resigned from the list.

If you have not already been updated, I have beeen restaged from Stage I Adeno to Stage IV Adeno with systemic mets to my lymphatic system. I am sure, with your knowledge of this disease, you realize that my recent diagnosis was not the best news in the world. I am, however, taking this as a big "pot hole" with a curve thrown in.

I am a patient of Dr. Joan Schiller, at the University of Wisconsin Comprehensive Cancer Center. I have been put on a 6 cycle regimen of Carboplatin/Pachtaxel, plus a Phase II Clinical Trial of ABT-510, over a period of 18 weeks. I administer myself 2 shots per day for the trial, and receive the Carbo/Taxel every 3 weeks. I will be getting my 2nd chemo this coming Tuesday May 27.

This website, with it's message board, has been the best thing that has happened to me. The people here are the most loving, caring, supportive, hope-filled people in the world. We all have one common bond, Lung Cancer, either as survivors ourselves, or as family members caring for another. All of us understand the devastation this disease can hold. We know that the "other shoe" can drop at a moment's notice, as it has in my case, but we go on with all the hope in the world that we will, eventually, beat this disease.

It has been difficult to go from being the chief supporter, to one who now needs the support of all the others here. I, sudenly, have become one seeking support, when I used to be one who gave support. That is why I love this group of people so much.

As I have told so many others, relax, pull out your keyboard and tell us all about yourself. You have a home here.

[Marie]

Hey Dave, You're still giving support to many of us and now you are also an inspiration.

[Tiny]

Bobp,

Your LC journey thus far has been very eventful, yet you still sound hopeful and upbeat. Everyone's story and information adds to our knowledge base and we all welcome new friends and "family" in spite of wishing none of us were experiencing this disease. Praying for good things for you.