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Snowflake

Stepping into the light....

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Hello all, I've been "lurking" for a while and decided to jump in and introduce myself.

Life has been an emotional roller coaster for the last year. I got married in June of 2002 and began working on blending a family (second marriage for both of us). Ups and downs there that would buck a "normal" person, but we've hung on tenaciously...

November 2002 my husband and I "shared" a case of pneumonia...in December, his had begun to clear up, my X-ray showed a foggy area in my right lung. My WONDERFUL family doctor wanted to follow up on that shady area and sent me for a CT Scan - this was the day after our family Christmas, December 27. Results from the CT showed a definite mass in my right lung, so she sent me to see a thoracic surgeon for follow-up. Due to my age (34) she was sure it was just an infection of sorts. (I'm not sure who was more shocked with the diagnosis, her or me!)

After talking to the surgeon, the decision for a biopsy was made and I was scheduled for January 28. Received the diagnosis of adenocarcinoma that evening, primarily staged as Stage I. The surgeon suggested I have it removed within three weeks and I began waiting to be "fit in" with one of the partners in his office.

Surgery was planned for February 10, same day as my maternal grandmother's funeral.

Surgery was more than it was supposed to be and instead of losing the lower lobe of my right lung, the lower and middle lobe were removed along with seven lymph nodes. Cancer was restaged as IIIa - I didn't find this out until my initial meeting with an oncologist three weeks later.

Went to MD Anderson for a second opinion in March. Sent home - guess I wasn't sick enough for them! I had been told to plan on spending a week in Houston (quite a "drive", I live in Michigan), so we did. Plan, that is. I had 15 minutes of the doctor's time "Sorry you have this disease, there's nothing we can do for you here. We do not recommend radiation nor chemotherapy for lung cancer, it's not proven to add to survival rate."

Needless to say, my husband and I were FLOORED with that and scrambling to change/cancel reservations and get home. Still have a pretty bad taste in the mouth over that...

My home oncologist also does not recommend chemotherapy, but said radiation would be fine...went for that, had to do SOMETHING.

Clinical trials were the recommended path, the oncologist set me up with Iressa the day after radiation ended (May 9). Side effects began the very next day...

Skin rash, acne-like? My face turned into the landscape of MARS! Not only was it ugly, it hurt! Solution? Antibiotic for 20 days. Calmed the "spots" down some. Finished the antibiotic, spots back with a vengence... As if the spots weren't enough, there was the assault on the GI tract - can only be described as explosive. :shock: The side effects kept adding up as I took the drug and the last appointment had a list of facial hair loss, hair loss, fatigue, loss of concentration/memory, brittle nails and pressure in the eyes. Doctor decided to take me off the drug for a month and see if the side effects I'm experiencing are truly from the drug and not something else...it's been two weeks and the rash is FINALLY starting to tone down. Tummy's been faring better.

I see the oncologist in two weeks and am not sure I want to return to the Iressa if that is an option. He has me on it as "preventative", an attempt to keep the cancer from returning - another trial for uses of the drug. My husband tells me the ultimate choice is mine, but it's a hard one to make. According to the surgeon, the odds of it returning are 50/50. According to the oncologist the odds are 40/60 in the favor of the cancer. The oncologist feels that a year of "hellish side effects" are not worth it with a drug that hasn't been proven to work for what I'm taking it for. (To be honest, the side effects were getting worse with use and I know that the ULTIMATE bad side effect is death and THAT doesn't sound like a good option to me - from what I've heard, if you get that side effect you don't get any others!)

ANYHOW, that roller coaster I mentioned.... I started back to work, but due to fatigue from not sleeping at night and confusion/memory loss have been in a fog. Not good in my profession, I'm supposed to catch everyone else's mistakes! Was sinking into one big depressive pit so decided to take a vacation for a week... GREAT attitude adjuster!

With a change of scenery, had a change of heart. My view of the cancer is that little black rain cloud that Winnie the Pooh sings about...even if it NEVER comes back, that little black cloud will follow me for life. Two years out, "what if"....five years out "what if"... Best use for rain clouds? Growing flowers! I'll be darned if I let this thing beat me emotionally before I have to take it on again physically - I may never have to!

(Need I add that at times the numbers all dance in my head and it scares the heck out of me? Keeps me up at night? Makes me wonder if I'll see my son graduate?)

BEST part of this disease? I found out that I have far more friends than I ever thought possible and could actually FEEL the "power of prayer" in the hospital and when I came home - the times when I really needed some help emotionally as well as physically.

So, my current standing with the disease? I was fighting 40 pounds of unwanted fat before the whole pneumonia thing and have lost half of that - some prior to surgery, some after radiation (had to maintain during radiation "or else" - I think they were going to take my birthday away or something) If I lose 20 more pounds, I'm buying a leather halter! Heck, got the tattoos and the scar, might as well show 'em off! I've told my husband and most of my friends that I plan on telling anyone that asks about that huge scar on my back that I got it in a knife fight... May as well have fun with the "trophies"! Maybe I'll get a Harley next....anyone know of a place I can get one with training wheels??

Well, my short introduction has become a novel! It's past bedtime here and the Sandman is calling my name.

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Welcome Snowflake and glad that you came out of your lurkdom!!

Sounds like you have had a tough year but it also sounds like you have managed to get a grip on things! You give me hope that I will somehow manage to reign in my emotions about this sooner or later. I'm currently on this roller coaster ride (I always hated those damn things anyway) and would like to get off, so believe me, I know where you've been!

Hope to see you keep posting...enjoy your humor and hey, I always welcome another novelist! :)

Debi

46 years old

Surgery June 16, 2003, Mid and upper lobe removed, Dx Stage 1A

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Welcome to the club no one wants to belong too!

I am curious where you are in Michigan and wonder if you have thought of getting a 3rd opinion at the Lung Cancer Clinic at U of M? We went there for a 2nd opinion and were quite impressed with Dr. Kalemkarian.

I know how horrible the rash is with Iressa, my husband is stuggling with it also. I wish you all the best. Keep posting and join us in the chat room on Wednesday. We could use more Michiganders.

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So glad you decided to post. I loved some of your images...using that black cloud to grow flowers! Seems to me that you need another opinion from a doctor who is going to seriously attack this disease with you. I am presently taking Iressa or a drug similar to it and, fortunately, am not experiencing the horrid side effects. Had some rash on my scalp when I first started, but even that just disappeared. The drug has not reduced my tumors, but has held me stable over the last two months.

I will hold you in my thoughts, prayers and heart, along with all the other fine souls on this list. I look forward to reading about future progress.

Peace,

Margaret

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Wow, that story sounds familiar. I am 30 years old and a nonsmoker and got my diagnosis in January when my pneumonia didn't clear up after months of coughing. I went in for surgery on Valentine's Day staged at "probably II, maybe IIIA". My surgeon went for a strategy of testing my lymph nodes first. Since they came back cancerous, the plan was to sew me back up and send me to an oncologist. However, I got a big scar anyway because in doing the biopsy he managed to cut an artery and couldn't stop the bleeding without cracking my breastbone. It seems like there are two schools of thought--my crew thinks it is better to leave the big tumor in until chemo and radation have shrunk it so there is confidence that chemo has also taken care of micro mets, and other doctors like the idea of taking it out as soon as possible. Since so far my treatments haven't shrunk anything at all, I find myself wishing that once that surgeon cracked my chest open he had gone ahead and removed the tumors. But then if he had I might be wishing he hadn't. No point in going there.

Anyway, welcome to the board and I have my fingers crossed that you stay cancer free.

Becky

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I think your post was fantastic. I love your attitude and humor and I find that you are an inspiration ! I'm adding you to my prayers. Please keep posting and keep us updated. Wish I didn't have to say it, but welcome to our family here! These guys are just the best!

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Incredible! I can't imagine how you even found the strength to post with such humor and detail.

Margaret was under the care of Dr. Kalemkarian at the U of M. Not the warmest of physicians, but that doesn't mean much to most patients. He is highly regarded, and tends to be quite direct in his evaluation of a person's condition. His treatment of her was hampered by the fact that she only had 40 percent kidney function, which significantly reduced the strength of the Carboplatin and VP-16 she received. Kalemkarian said quite clearly that often the treatment is more deadly than the disease, and a stronger dose would have resulted in total kidney failure.

Anyway, I ramble. I just wanted to say how impressed I was with your post, that your strength and determination are clear, and I wish you the best of fortune in dealing with this miserable disease.

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Snowflake,

I have a question: why didn't your oncologist try the usual chemo? Iressa is given to patients who have had no success w/regular chemos. Why would she go directly to Iressa? Previous trials had found no reason to give chemo after surgeries, but that opinion has been changed! Why isn't your oncologist up to date with treatment.

I have another question: Did the surgeon get it all out? With margins? If so, why the radiation? More questions: Are you being treated at a cancer center? Did the surgeon have alot of experience with lung cancers?

Finally,I can't imagine why you got such an abrupt and callous reaction from an MD Anderson oncologist.

Thank goodness you have a wonderful sense of humor to get you thru!

I hope you get better treatment from now on. Is there another oncologist available to you?

Keep us posted. Your case is very disturbing, to say the least.

If you are seriously depressed I can see why. Your history sounds a bit fishy.

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Greetings and salutations!

Answers to some of the questions asked:

Area of Michigan: Tri-City, about an hour and a half north of U of M...at least an hour from any place exciting!

Why not a third opinion? I'm actually okay with my current oncologist's take on what is going on. I could second guess this darn disease forever, one thing being "why couldn't it have been found earlier, before spreading to the nodes?" BUT, on the flip side of that, what if it had been found LATER? Unfortunately, I will never know what the "perfect answer" was for any of it. I WILL know that with the information I had I made the decisions that felt right. If I begin having heartfelt doubts on my treatment, I will seek other opinions.

Why not chemo? My cancer was totally removed - the "margins" being two lobes of my lung. The original plan was one lobe, upon looking at my innards, the critter was growing in the fissure so EVERYBODY came out...the tumor, the lobes, the nodes (I'm pretty sure that the doctors scooped out breast tissue with the melon baller they used - anyhow that's the 'pain map' I drew!). According to the doctor, there was nothing left to poison!

Why radiation? To hopefully eradicate any fugitive cells from wanting to set up residence again.

Why Iressa if not traditional chemo? I do not have a tumor to shrink, I am/was on a clinical trial of a preventative sort. The Iressa was being used to suppress new cancer growth in the lung.

Current plan of action is CT Scans every three months and X-rays the months there are no CT Scans. I "donate" blood every month, as well. (Okay, anyone ELSE here that feels like the pin cushion of science?)

Heck, I have GREAT insurance...and I seem to be the perfect guinea pig. Non-smoker, office worker, otherwise healthy and young. Of course, I HATE needles - that didn't ease with all the pokes of the last year, in fact, I think it's worse!

Any suggestions of where I can find a list of chemicals that are hard on the lungs? I work in a chemical plant and have some questions on what I really shouldn't be exposed to...

Any input would help!

Thanks!

"Work like you don't need the money, love like you've never been hurt, dance like nobody's watching." ~Mark Twain

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Hi Snowflake - Sorry you have to be here, but let me third or fourth or whateverth the opinion that your attitude is GREAT! You've got the facts, and that makes such a huge difference in well-being and recovery. Be well! - Teresa

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