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afraid of recurrance

paula2
Posts: 163
Joined: Oct 2005

Is anyone else in the limbo of remission, watching that ca 125 and wondering what now, what next, and what's normal? The pain of neuropathy in the feet is slowly subsiding but the numbness at 3 mos after chemo, is persistant. I pray, eat supplements, walk, have joined a group, do visual imagery and read about diet and healing and mind body connection...am I missing something...that I can still be so scared? This metastatic ovarian cancer is the biggest challenge of my life. I am inspired by what you all say here. Thank you for any advice and bless you in your healing.

mopar
Posts: 1950
Joined: May 2003

I think I can speak for most of us when I say we all go through this. For me, it's a monthly thing (I get my CA125 monthly). Watching those fluctuating numbers can get overwhelming. After chemo you will start to see some consistency in the numbers. Mine were from 14 to 19. It even went as low as 11 at one time. But this past year it started rising, but not coming back down. Right now, I'm still waiting to hear from my doctor who is addressing this 'lymphocele' that I have. I intensified my diet/exercise program and my last test showed a decrease by 4 POINTS! YES! So, I'm hoping my doctor will be as encouraged as I am by that. Anyway, it is the sudden change and/or consisting upswing in numbers that make them take notice. Otherwise, the fluctuations will also occur. Many factors, even something as simple as a cold or stress, can make those numbers change. You will soon find out what you 'baseline range' is.

I too had neuropathy very bad. And I also continued my nutritional and exercise approach. It really, truly helped. All those things you are doing are things that we should all consider doing anyway, even if we were perfectly healthy. It's just a good lifestyle to follow. Everyone will find what works for them.

Do I worry? Sometimes, but my faith and family are my strongest weapon. So, you can bet that many of us are going to be praying for you. And you're at the right place for support and info. Please be sure to visit us again.

Until then, hugs and prayers!
Monika

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

Hi Paula, I take L-glutamine for the neuropathy. I had it all the way up my legs and hands. Now it is mostly in my feet. I think everyone worries about the ca125, it is normal. You will find as time goes by the worrying gets less. Cry when you need to, laugh and enjoy life. If anything can come from this it will be knowing even more than you did how special this gift of life is. Live Life to it's fullest.

Prayers adn Hugs

BonnieRose

Cullipher
Posts: 7
Joined: Aug 2005

I was diagnosed with ovarian cancer September 23, 2003 stage 11c...I had a complete hysterectomy...Six chemo treatments taxol and carbo....which I had a reaction on my second treatment with the taxol so then I just took the carbo....my CA125 runs anywhere from 11 to 14 I have did real good so far...I feel better than I have felt in years.....But I do have a fear of it returning....I put it in Gods hands....and I stay busy...I do understand how you feel...I just feel that God is going to take care of me.....

carrie13329
Posts: 3
Joined: Sep 2006

hi i am new to the site..I also was stage 1..6 treatments of carbo and taxol..#5 today..one more the 26..My ca 125 has been 11 today 12. she said it was fine...It is scary though because i thought the numbers would just keep going down but she said that will probably be my base line 11 to 14..What did you start at mine was 39.9..We are very lucky, i had no symptoms just a dull ache from a cyst..please write back

paula57
Posts: 93
Joined: Jul 2005

Hi! I just got back from M D Anderson Cancer Center in Houston. There is more waiting, I have to go back in Dec. I think we are the lucky ones. We may be in limbo and the waiting has always been so hard on me, but we could be in worse shape. We have just got to learn to take it one day at a time. I'm still trying to learn that myself. Good Luck! Paula

Isabel76
Posts: 13
Joined: Dec 2005

I think you have to try and look forward - try to imagine your future the way you want it. Imagine visually what you are going to do with your life. Most importantly, take time out to relax and also - laugh and have fun!! We underestimate the power of the mind sometimes I think. I am clear of a germ cell tumour I once had on my right ovary, and it was stage 3. (this is back in january). The chemo killed it off, but I too am so so scared of having it return one day (Im actually thinking of having my left ovary removed too, just in case, but thats anbother story). I can tell you from experience that the numbness you are experiencing will pass. It takes time. Its just one of those things from the chemo.

I just try and look forward to the future, try to have lots of fun, hang out with people I love and cherish, and create positive energy - for me this is by doing tai chi or yoga or walking my dog on the beach (a very healing thing to do). Also by writing music... Some find it in painting or gardening etc...

In addition to all this mind stuff, a thing I heard about in the grapevine in the oncology ward I was having chemo in was "glyconutrients". I started taking them and vow never to stop. I feel it does some good and I definitely feel good. (Its expensive though). And generally just eat well.

But basically the best advice I can give to you is try and push it out of your mind (I know its hard but you have to try) and focus on your future and what you want to do with your life, and have fun while getting there :o)

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