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[candee]

My name is Candee Hamilton, I am 50 years old, married to

Phil for 17 years. I have two children, Michael 23 and Sadye 21 from my first marriage of 5 years. I was diagnosed with Stage IIIB, inoperable, adenocarcinoma, Left Lung on April 30, 2003.

I started having pain/pressure behind my left eye and severe pain in Left Shoulder/Neck/Arm in December,2002. Due to my history of Sinus Infections and Cervical Disc Disease my family physician treated me for a sinus infection with antibiotics and sent me to physical therapy. The pain in my face became worse during the course of antibiotics,and I became hoarse and started aspirating fluids when I drank, so she sent me to an ENT. The ENT treated me with Prednisone and ordered a CT Scan of my coronal sinuses, this showed no signs of sinus infection. Regarding my

horsenes and aspiration problem, he had me stick out my tongue, which he held with a piece of gauze and pant, everything looked normal,he said. During this time my family physicion had ordered Percocet for the pain. It really did not take it away, but took the edge off of it. The ENT recommended seeing a Neurologist.I saw the neurologist, she ordered an MRI of the Brain,which was normal. She also ordered a Barium Swallow and a Speech Therapy Consult. The Barium Swollow showed that I was aspirating when I swallowed clear liquids. The Speech Therapist saw me

and never wrote a report???? The Neurologist ordered Topomax for me to take at night for the pain. This did help some, but still did not relieve all the

pain. The Physical Therapy did nothing after two weeks so I called an Orthopedic Physician. He took xrays of my cervical neck, treated me with Trigger Point Injections(which did nothing) and ordered MRI of the Cervical Neck (this showed evidence of severe disc degeneration) and sent me for more Physical Therapy. He ordered Vicodin ES for the pain, this also took the edge off it, but did not relieve my pain. The pain became so dibilitating in mid to late January that I went on short-term disability from work. After 5 of weeks PT the PT facility discharged me due to the fact that there was no pain relieve. I then told my orthopedic doctor that I wanted to see a surgeon. I saw the surgeon, he said, I was not a

candidate for surgery and he referred me to their Pain Management Physician and recommended I get a 2nd ENT opinion for my hoarseness & aspiration of fluids. The pain management specialist did an EMG to

figure out which cervical nerves were impinged and recommened I see someone for the hoarseness & aspirating problem before he do anything to relieve the pain. I saw the partner of the first poor excuse of an ENT Specialist. She performed and endoscope immediately and discovered that my left vocal cord was paralyzed. She order a CT Scan of the chest and

the neck. The CT Scan of the neck showed paralysis of the left vocal cord. The CT Scan of the Chest showed Multiple pulmonary masses, the largest seen within the left paraaortic region at the aortic arch level. The two remaining masses were seen within the left lung apex. Needless to say a biopsy was strongly recommended. I was referred to a Thoracic Surgeon who ordered a biopsy and PET Scan. The biopsy showed, metastatic moderately differentiated mucin producing adenocarcinoma, mediastinal mass biopsy. The Pet Scan showed these tumors to be primary, with no additional findings noted. I was referred to several oncologists and am happy to say that I found a competent oncologist that has took me off the Medical Carroussel . I have had 30 Radiation treatments and started chemotherapy on 6/26. Have received Gemzar & Cisplatin. My pain was managed with Duragesic patches and that enabled me to function as a normal (albeit high) human being once again. After forgetting to change one of those patches for 27 hours past the alloted time and discovering that I had no pain, my oncologist decided to do a PET Scan, three CT Scans, and a Bone Scan. These came back normal, showing only formation of scar tissue in my lung. (Glory Be) I was declared in remission on 8/13/03.

I am now participating in a Phase II Clinical Trial using Thalidomide as an antiangiogenisis drug.

I am continuing to love life and have never quit smiling, for as Warren Zevon said, "I now know how much I am supposed to enjoy every sandwich".

Thank You for listening, sorry to take up so much

space on the board.

[bobmc]

Hello Candee;

A big welcome to ya, I'm so very happy you are doing better! You certainly have been through quite a nightmare and then to get diagnosed with lung cancer. Must of drove ya up a wall.!! Glad you found us and don't worry about venting or the length of the message. Were kinda like one big family here, not always happy but we help one another deal with this d---- disease.

Interesting, your the first one I've heard of that's doing the Thalidomide trial. I saw the PBS TV special on it awhile ago, I think it was titled Cancer Warriors or something like that. Anyway, when you get a chance tell us more about it, also where are you from and where are you being treated.

Again welcome and glad your with us,

God bless and be well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[Don Wood]

Hi, Candee, and welcome to the board. I'm sorry about the lung cancer, but sorrier about the run-around you have gotten. I'm glad you finally found a competent and caring onc. We were fortunate. My wife went to our regular doctor because of loss of function in her left hand and arm. He sent her to a neurologist, and an MRI was done, where the first tumor showed up on her upper spine. When we first went to the onc, his first priority was to allieve the pain! It took a while to identify the bone tumors as lung cancer because she had nothing in the lungs, except a shadow on the top of the left lung. She has had chemo and radiation and is now on maintenance. Keep posting and let us know how things are going. Lots of support and info here. Don

[BarbaraL]

Candee,

That's some story! I've heard so many horrid stories about the medical profession, and the carousel so many have to ride to get a diagnosis. I've been fortunate in that regard, and have been happy with the many doctors and nurses involved with my care.

I'm also somewhat shocked at the proclamation of *remission* in someone with Stage IIIB, let alone in such a short period of time since diagnosis. It sounds like no one ever confirmed that you had lymph mets (please correct me if I'm wrong). Perhaps you were incorrectly staged?

This is a critical issue for me, since I'm a IIIB, supposedly inoperable, patient. (See history below; I'm in NJ too, by the way.) My onc tells me I am not a candidate for radiation, yet you got it. I'm wondering if you received it basically to relieve pain, and it had additional surprising and wonderful effects for you.

*Welcome* to the board, but sorry you have to be here. I'm hoping you'll be one of the IIIB survivors who can inspire me, and provide information I can push my doctor with.

Barbara

[JudyB]

Candee,

What a story!!!!!!! What a woman you are!!!!!!! A survivor fer sure!!!

We will all be looking for more posts from you.

JudyB

[candee]

Barbara,

Unfortunately I was not incorrectly staged there were calcified hilar lymph nodes found on my first CT Scan. I had three tumors in my left lung the largest measuring 8 x 5x 3.5 cm in AP, transverse and longitudinal dimensions respectively, this was in the paraaortic region at the aortic arch level.

It has come to my attention that pleural effusion negates the possibility of radiation. I received radiation to relieve the pain and kill the tumors. I do have some Shortness of Breath due to Radiation Fibrosis, but I can live with that. I still ride my bike along the shore and walk, I just don't sprint.

I have a friend in TX, who was also dx with Stage IIIB inoperable, incurable, Adenocarcinoma NSCLC she was treated with radiation.

My oncologist will not say yea or nay(he will never say something works unless there is clinical proof) on one thing that I think helped in the efficacy of my treatments. I also have arthritis, for which I take Celebrex. When my family physician found out about my diagnosis, she upped my dosage. She had read about the trials that were being done and how much the guys at Harvard (as my Onc. says), believe in it. I did end up having a skin rash reaction to the higher dose and had to be taken off of it completely after treatment. I also took Essiac Tea which I do believe has some effect on tumors and my onc. okayed me taking it with my chemo. I still take it daily, just not as many doses.

I also think my *remission* is so very remarkable! I never expected to hear the word *normal* regarding my scans ever. When I asked my onc.

what my goal should be, Cure, Remission or Pallative Care, he said Remission - so that was my choice. I have been told by others that my oncologist is the most aggressive onc. in the State of NJ and he is involved in more research and clinical trials than any other onc. in NJ. He is a member of the New Jersey Commission on Cancer Research. This gives me an extreme amount of confidence in him. He has a passion and a mission in his life. His wife is the head oncology nurse with a shared passion. Everyone in the office is like that.

Thanks for the welcome. I hope this info helped.

[stephnewyork34]

Welcome, and I agree with Mom, Judy B, what a survivor!!! *hugs* and welcome again!

[Ry]

Man you really had to work for that diagnosis. Welcome Candee.

[Donna G]

Welcome, when I was just 50 I went to the doctor because I had chest pain and shoulder pain and was expecting an ortho consult but the doctor ordered a xray and low and behold it did show a tumor in the apex of my right lung. I had chemo, and radiation then was able to have surgery then more chemo , it has been over 5 yrs now since I finished treatment. When you talked about the pain I just knew you had a tumor in the apex, it is typical to have pain and everyone I thought it was ortho type thing, one guy I know went to a chiropractor for 6 months before getting more follow up. Now that you are here keep us posted on how you are doing. By the way when they did surgery they told me all that was left was scar tissue. Again welcome Donna G

[LindaMRG]

Welcome and thank you for taking the time to share your inspiring story with us. Im so sorry you had to go through so much! Im so glad you're in remission!!!

[awpoint]

What time you have had!!! But I love the ending. Anne

[AmyLW]

I am so glad to read you are in remission. What a gift.

I can so relate to you on the medical incompetency. I never had lung cancer. But I had a benign tumor wrapped around my spinal cord. I don't know when it started, but I can trace the symptoms back to around 16 or so. I started going to the DR around 19. From 21-23 I went to 8 different Dr's complaining of symptoms from migraines so bad I couldn't get out of bed for weeks, to my hand balling up and not being able to open it, severe imobilizing shoulder pain. My legs were almost completely paralyzed I had to hold a wall to walk and would still fall. My baby was 13 months old. I made my way to an er and they admitted me immediatley. This believe it or not is the very short version, but basically when they saw the tumor they told me I would most likely(95% chance) never walk again. And 60% chance I would die. I walked hours after I woke up. I only had paralasis in my left arm, and they told me it was permanant, but again, Thankfully they were wrong. I have mild nerve damage still and my ring finger is still not right. But all very liveable!

I am so glad you overcame thier idiocy!!!!

[candee]

Thanks to all for the warm welcome!

Regarding the interest in the trial. It is a Phase II Clinical Trial using thalidomide as an antiangiogenisis. It is being conducted thru Fox Chase and sponsored by Celgene. I started on 9/5/03 on 100 mg. On 10/3/03 I went up to 150 mg. On 10/31/03 the dose will go up to 200 mg. I will continue with that dose for 2 years. I go in to my onc's office every week to get a CBC done and talk to the head oncology nurse. I see my onc once a month and will get scans every four months during the study. I will have the scans done twice a year for three years and then once a year when treatment is over.

Treatment will be stopped early if: Cancer comes back or if for any reason I cannot tolerate treatment with the study drug. I will be offered a different treatment if that happens.

Have a Great Day!

[palves]

Hi Candee

Wow, what a merry go round you have been on. I'm so very glad to hear about the "remission" side of this. My dad has recently been dx w/ Stage III b too adenocarcinoma right lung, chest, lymph nodes on both sides of lung.

He is being considered for a Stage II trial also using Gemcitabine, Paclitaxel and Carboplatin. Sounds though like you are just getting Gemzar now though. Am I correct about that? My dad's cat scan is being rerun tomorrow to see about the pleural effusion. I have also heard that no radiation if you have pleural effusion. But maybe thats from what I read here and not from the Drs.

If its not too nosy to ask where / what part of NJ are you being treated in? We are in Central NJ. You can privately emial me if you want. I can't get Private messages through this board though.

Good luck to you ....

Thanks

Paula