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Lung, liver, lymph node mets

rosiegirl
Posts: 22
Joined: Mar 2004

Hi all,

I haven't contributed much in the way of encouragement, but follow all your stories at least weekly. All of you are so inspiring and compassionate and strong, and I have carried them in my heart all year to feed my courage. But now I'm beginning to bottom out in terms of keeping my head above water.

I've just started a second-line course of chemo with Topotecan. I had a total hysterectomy with staging surgery December 2003, and was dx with Stage IC. Did 6 rounds of carbo/taxol, ending in June. Had persistant vaginal bleeding all summer, which they'd known about since it started 1/2 way through the chemo. My doc finally decided we needed to get to the bottom of it and he did an evaluation under anesthesia September 1st, when he found a recurrent 5 cm. tumor in the pelvic cul de sac. Believing it was localized (but didn't do any whole-body scans at that time), he recommended radiation to reduce the tumor and stop the bleeding.

Six weeks after finishing radiation, we did a PET/CT scan that revealed my cancer has metasticized to my lungs, liver, and lymph nodes, and is growing fast. (One of the original path reports did peg it as a Grade 3 tumor).

Anyway, I'm just agog at how I could have gotten from Stage 1 to Stage 4 in a year! It's just a really aggressive, chemo-resistant strain, and after maintaining a strong, positive attitude all year, I am beginning to cave. Panic is just below the surface and I'm starting to lose sleep from it.

I am being treated at a NCI-designated CCC by a gyne/oncolgist who did a fellowship at MD Anderson, so it's certainly not a matter of not being the right person for the job. Plus I do like him very much. He says I might be eligible for the TLK 286 trial if the topotecan doesn't work, but then again my radiation might knock me out of the pool. He's checking on that.

Sorry to rant on so long, but I'm running out of glad, temporarily. Am calling Monday to make an appointment with the therapist associated with the practice, and I think that will help.

Love and prayers to all of you,

Jeanne

Marty05
Posts: 13
Joined: Jan 2005

Jeanne-
You are amazing. To be able to maintain a positive attitude while going through this presents a model for all of us. However, NOBODY can expect you to keep that ALL of the time. You have the right to vent and look for places to express your frustration and fear. We are all here to be one of those outlets.
I am relatively new to the board as well and have asked for some coping advice too. There are great people here who can offer it.
Keep your faith. I will keep you in my prayers. The water seems deep now, but allow yourself the relief of truly believing you can make your way through this. You are looking to the long term which is good, but don't forget to take each day at a time.
Before I started my chemotherapy treatments, I started having panic attacks and was suffering from some major stress. I have recurrent ovarian cancer and am 24 years old. Someone suggested yoga to me. I started the week before chemo began...I continue it now. It allows me to focus on my breathing and to just allow all of the negativity to leave my body and make room for more of the positive that we all need. I also met a bunch of people who are incredible. New faces offer a new sense of hope. I strongly recommend it if you haven't tried. Ask your doctor about some of the positions because some may not be good for you...I am sure he will agree that the relaxation part IS a good thing though.
Jeanne, you are not alone. We are all here with you. Find comfort in any way that you can (even if it is chocolate!!!)
God bless you and I send all of the best of luck to you.
Marty

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Jeanne,

Welcome to the board and thank you so much for sharing. This board has been a great support for me and encourage you to post your questions and feelings, there are so many women that will support, encourage and share with you.

I just finished topotecan for a recurrence and it brought my tumor markers down after only having a short remission. I pray it works for you and if not you can get in on the study.

Congratulations on your 1 year cancerversary, I just celebrated 2 years, may you celebrate many more.

Prayers and Hugs Bonnie

groundeffect
Posts: 651
Joined: Mar 2003

Hi Jeanne,

Having been staged the same with OVCA I'm very sorry that you've had such a profound recurrance so soon after your initial treatments, and am also agog at the speed of the progression.

I hope you'll be able to find something to arrest the disease. If I didn't know as many women who have been treated with many different drugs, I wouldn't hold up hope for finding something effective beyond what's been tried already. We all talk about what treatments we've had, and how they've affected us. I hope you have someone to talk to who has had similar experience. It is comforting.

Thank you for telling us about your situation. I hope you'll be able to enjoy life while continuing your fight.

Marty05
Posts: 13
Joined: Jan 2005

How ya doing, Jeanne?

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