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Hello from Colorado!


Leslie221

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Hi, everyone! I've visited this site several times and gotten a lot of reading your stories, thoughts, suggestions. Finally time for me to officially join you.

Although I smoked, my dx was a big shock. I have always been really healthy, active. Was walking (got up to 3 miles a day) with best friend in Dec. when started to feel short of breath. No congestion, a slight cough, but felt like I just wasn't getting enough oxygen. Went to my doctor, he listened to my chest and heard nothing. gave me anit-biotics because it was flu season and I tend to develop bronchitis. Antibiotics didn't do a thing and shortness of breath got worse. Went to er on Jan. 5. Chest xray showed both lungs completely full of white spots and oxygen level down to 65%.

Because we live in a rural area now, this small hospital sent me my ambulance 45 minutes to bigger hospital. No one knew what was wrong - they even thought SARS and put me in a quarentined room. I thought the whole thing was silly - I didn't feel THAT sick! But I remember nothing after arriving at the hospital and waking up in ICU 11 days later!

In the meantime, they put me on a ventilator, paralysed me and knocked me out because my lungs just couldn't filter oxygen into my bloodstream. They told my poor husband I had only a 5% chance of living. Friends and family flew out and I was given last rites (best friend is Catholic, I'm not).

Third day they did a bronchoscopy and dx Bronchoaleovar carcinoma (BAC). Dr. said they couldn't give me regular chemo 'cause I was almost dead. He had a bottle of Iressa a former pt's widow had donated and asked to try it on me.

Two days later, chest xray showd my lungs were half clear, my oxygen was up and my cheeks were pink again! My husband says I was the talk of the ICU! Drs said they had never seen such a quick and strong reaction to Iressa. A week later I was off the ventilator and awake! I went home, without oxygen or anything but the Iressa 14 days after I was admitted! Took a week to get my strength back and have felt normal and healthy ever since.

Unfortunately, I still have the cancer and, because it had was in both lungs and had already metastised to bone by time of diagnosis, I am stage IV. Have taken Iressa the whole time and only slight "shadows" show up in left lung, right lung is down to original tumor (3/4"), mets in rib,three lower vertebrae, and pelvis are small and stable. Had MRIs and no other mets anywhere.

I'm one of the lucky few Iressa works well for. I go monthlty to Univ. of Colorado Canter Center and have a great doctor. I get Zometa each visit with no side effects. Will chnage to Tarceva at June visit because I can get it free from mfg. Insurance won't pay for Iressa or Tarceva because I haven't had 2 tries at regular chemo. Really makes me mad they are unwilling to treat me as an exception to their rules. I think the Tarceva will be even better but may have worse acne than the Iressa has given me (my only side effect and easily managed.)

I live my life as normal except I am a different person emotionally and spiritually. Seems totally strange, but I am happier and mentally healthier than before I knew I had cancer. Life is more precious, and can accept love from others fully now, and wouldn't go back to the way I viewed myself and life before. But, I would love to have a long time to enjoy this new way of living. I get it, God, okay? I'll just keep living this better way and maybe I can last on new meds until they develop a way to make cancer chronic but not terminal.

I guess someday I might not have an easy to take med that will keep life as normal as it is now and I will needs lots of support then. I know I'll get it here. In the meantime, I am really interested in everyone's medical experiences, suggestions, and morale boosting.

It's so good to have support, friendship, and laughter. A friend who is surviving colon cancer forward funny stuff to me all the time and I love it. I'm from California, but my great husband of 15 years, Mark, and I relcated to very rural Colorado 4 years ago so he could manage a wind energy plant his company built here to generate electricity. We're city kids (me San Francisco, he Orange County) who became country dwellers a long time ago. People in my little town have opened their hearts to me and I feel surrounded by support. Am also surrounded by biting gnats this time of year so can't get out and take my walks for awhile. Use my stair stepper machine inside and do Pilates with tape at home to get fit.

Anyway, here I am. I put a funny picture on as my avatar until I scan in a current photo I like to share my mug with everyone.

Leslie

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Welcome Leslie. I was "young" like you when I was diagnosed. Just turned 50. OK, keep it quiet, don't add it up outloud! Great news in your post re Iressa working so well. Here in our support group we have had one young women who had BAC. She is doing well. Keep up the good news! Donna G

PS is that a bug on the cat's nose? Also, I have been blessed with dogs over the years that amuse and make me laugh. Laughing is good for you.

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Hi Leslie,

So glad to welcome you! You sound like you are doing wonderful and we like to hear things like that.

I really identified with what you wrote about living your life differently now. I, too, live differently. I, too, let God know that I do get it now. And I agree that now that we DO get it, we need LOTS of years to live better than we did before, right?

I hope to see you around often. It is good to get "fresh" input now and then - especially from such a "youngster" as yourself!

Kasey

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Welcome Leslie~

I am glad you found us. Your story is amazing! My husband is also fortunate that Iressa and now Tarceva work for him and keep the cancer in check. I hope you will post your funny stuff in the "Just for Laughs" forum, those boys need some help from the women to replenish their joke supply.

Rochelle

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Welcome, Leslie, and thanks for sharing your story with us. I'm glad to hear Iressa did so well for you. Wish you all good things as you battle this disease. My wife, Lucie, is Stage IV, NSCLC (non-smoker) and has lasted 2 1/2 years so far. Hang in there with us. Don

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What an interesting story! It really seems that on the % of people that Iressa is effective for, it really makes a dramatic difference.

It sounds like you have great Doctor's and medical support. Just wanted to suggest that you might also want to keep an eye on the phase II results for the GVAX lung cancer vaccine conducted by Cell Genesis. The vaccine in phase I trials seemed to be particularly effective for people with the BAC subtype of lung Cancer such as yourself. Here's a link to the page on their website that references this trial:

http://www.cellgenesys.com/clinicaltria ... ncer.shtml

God bless and thanks for sharing your story.

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Welcome Leslie,

It sounds like you have been through the ringer and came out the other side doing pretty good. Hang tough girl.

Good luck and take care.

Mare

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Welcome Leslie,

What an interesting story you shared. Glad you got those amazing results from Iressa and hope they keep on happening from Tarceva. Keep us updated on your progress and you're right, 50 is young and you have lots of strength and stamina to fight this da** disease.

Gail P-m

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Thanks, everybody! Thanks for your responses and support.

I have been so lucky/blessed/fortunate ever since the cancer dx. The doctor said, "You may have had the misfortune to have a genetic make-up pre-disposed to this cancer, but you certainly were lucky enough to get the good genetics you need to fight it!" Seems so.

I'm keeping an eye on lots of clinical trials and new breakthroughs. Thank God for the internet -- can't imagine having the ability to research, learn, or share so effortlessly without it.

That's how I chose my Dr. First went to the only oncologist available within an hour's drive and he's only at our local hospital once a week. A very nice older doctor who seemed to keep up on his reading and learning. But he seemed to have kind of a resigned attitude and I sensed his only plans were to keep me "comfortable" until the inevitable end. Didn't send me for a full body bone scan after the CT scan showed mets in ribs,spine,pelvis. That kind of thing. He is probably a competent and caring man, but I think he lost his edge, given up dreaming big. Not the right doctor for me.

I got on the internet and Googled "lung cancer Colorado" and found the wonderful U of C Cancer Center and a Dr. Paul Bunn. Dr. Bunn has tons of mentions on the net, even quoted in FDA literature! Anyway, he has a very positive approach and believes one day cancer will be cured. I see his associate (Assistant Professor of Medicine) Dr. Witta because the Iressa/Tarceva-type chemos and genetic relationships to their success or failure are his primary interest. They do lots of clinical trials there and I've met the woman who coordinates them. I told Dr. Witta the first tiem I met him that I was open to trying anything that might give me a longer QUALITY life. It's a really supportive, patient-friendly place and we (Mark always goes with me) never feel down after a visit. It makes a difference to shop around for doctors, doesn't it?

I'll put some jokes on the website. I ordered a CD of funny videos/audios/jokes from eBay and there's a lot to share.

Hope the next week is a good one for everybody!

Leslie

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Leslie,

love the attitude! and the cat avatar too.

Just wanted to send a welcome and let you know that you 're in the right place. Lots of survivors and HOPE here.

My best,

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Hi Leslie,

Welcome, so glad you decided to post. Also welcome to the living your story was so enlightening and a miracle.

We are alwsys her for you.

Keep us posted on your test results etc.

Maryanne

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Leslie,

Welcome. I am so glad to meet you, though I wish no one had to look for this board. We are all a big family that likes to share and help each other. Your attitude is wonderful and your reaction to Iressa is great. Nice to meet you.

Nina

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