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Too many metastases means terminal. Too many metastases means terminal.

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Unread 06-04-2004, 08:23 PM

Hi Linda,

I don't know if you remember me. I'm Jane from Boulder. We spoke a few times via e-mail. You impressed me so much with your strength and courage. And now I can read in your last post that you still have that strength and life force in you. Please feel free to e-mail me and maybe we can get together. If you need anything at all just let me know. I've got one more chemo on Monday and I'm done. It's been really hard and I wanted to quit many times but you encouraged me. You showed me a different way to look at the treatments. Are you still going to any support groups? I would be interested in those trials at the University Hospital.

I pray for you and I feel so sad that this has happened. But you got in there and look what you accomplished. I would have just faded away. Keep fighting Tenacity!

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Unread 06-04-2004, 10:20 PM
Too many metastases means terminal.

Big and for your determination and for living up to your name. I was appalled at your first post but had tears from the second. You go girl!
Unread 06-05-2004, 07:27 PM
Too many metastases means terminal.

I'm so glad things are looking up. :-)

I actually spoke to my own doctor about your situation, as it prompted a lot of questions. I wanted to know how many surgeries they would be willing to do in the event of a recurrence, and the general policy is that they will do "as many as needed" provided that the surgery will provide benefit to the patient.

I also mentioned that your CA125 hadn't moved yet you had cancer show up in other areas. He said that it's difficult when that happens, since a CA125 won't pick it up. I forgot to ask how often CT scans are recommended for someone without symptoms.

I'm glad you've shared your story with all of us. Every new lesson I learn from this board will help me in my own fight to stay alive. I hope that your new treatment plan will do the trick!

BTW -- I read the Lance Armstrong book, and I don't recall that he had three separate cancers. I believe he had testicular cancer that metastasized to his lungs and brain, and if memory serves, it was all the same type of cancer.
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Unread 06-05-2004, 08:24 PM
Too many metastases means terminal.

Thanks all for your encouragement, advice and prayers!

I got my second opinion from Rocky Mountain Cancer Center. It was pretty much in line with what Kaiser has been telling me. Although everytime I talk to a doctor I learn more and more about what I'm dealing with and how to cope. Also Kaiser is being much more responsive now. I think I'll stick with the 2nd Kaiser ONC that I talked to because we seem to communicate better with each talk.

I went to Kaiser after my consultation over at RMCC on 6/4. I was scheduled for a chemo session: carboplatin and Etoposide. I talked with Kaiser's social worker and said that I didn't want to do the chemo. The SW was concerned so he arranged my meeting for the ONC to occur not after chemo but right then and there. The ONC thought that I had only 4 cycles of that chemo but I actually had 5. We both thought that it would be better to start treating me with a second line chemo, Topotecane. It seems that the previous chemo has eliminated 1/2 the metastises.

I have a very tricky cancer. It is small cell which accounts for somewhere around 30% of cancers. Small cell tends to metastisize quickly. This can also be it's weakness because it responds to chemo and radiation better than large cell cancers. The doctor doesn't know if the cancer originated in my lungs or uterus but the main focus is to treat it with chemos that deal with both or just small cell lung cancer. I was exposed to a lot of 2nd hand smoke as a child. My mom tried to quit but never could. I also smoked but not much the last year of college but quit as soon as I graduated. I suspect this cancer came from my lungs. Small cell lung cancer can metastisize all over the body. If this was caught early enough with a CAT scan then I would have had a lung resectioned (sounds horrible!) or some radiation and a very low change for recurrance or mets. If any of you have been exposed to second hand smoke then I would highly recommend a yearly chest CT scan. There's no telling how much cigarette smoke it takes to predispose someone to cancer. Also I didn't have any symptoms like a persistant cough, etc.

There are trials for small cell lung cancer that I am looking into. There are very few to no trials that I qualify for that deal with small cell uterine cancer.

The doctor's at RMCC gave me my records. I looked at my prognosis. It said that it was poor and that I had months to live. They also mentioned Hospice or Palliative care but I haven't given up yet! Yikes!

As I was getting chemo this past Friday I started up a conversation with a man sitting in the recliner next to me. He's been battling lymphoma for 10 years. This was his 4th recurrance and the doctor was trying a new medication that just got FDA approval. He said that he's gotten the poor prognosis as well as the "months to live" statement several times. His wife was there but she was kind enough to let us share "war" stories for 1/2 hour. He was quite inspiring in his will to keep going on and hope in the meantime for research to catch up. Looks like this new drug might be the one for him. I hope so!

I also hope that research catches up with small cell, lung and uterine cancers and will carry on in the meantime. I still can not believe that my life has changed so much. I was so active: climbing mountains and running and lifting weights. Just 2 weeks ago I hiked up an 8K foothill and met an awesome breast cancer survivor that I've been chatting with ever since. She was amazed that I was up there! She was the picture of health and had her husbands and 2 little blond haired angels with her. It had been about a year since her last treatment. I wished I looked like her!

In the meantime I pray for a long-lived remission so I can have many years to be a part of my beloved Hystersister family!

Unread 06-05-2004, 08:30 PM
Too many metastases means terminal.

You continue to amaze me! If attitude is half the battle then I'd say this new batch of cancer doesn't stand a chance. I don't know enough about all these drugs to comment one way or the other, but ti sounds like you have things well in hand!

Lots of prayers for you and yours. Keep us posted!!

love and fluff coming your way,

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