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125cacounts gone to 1000, Can the counts ever come down?

adny's picture
adny
Posts: 6
Joined: Sep 2012

My best friend was diagnosed with stage 4 uterine cancer in June of 2011. She had a total hysterectomy, removal of some lymph nodes. They cut out a little spot on her rectum and also
a little spot somewhere behind the uterus. She said they also laid out her intestines on the table and examined everything. I believe this is called a wash. I think everything in that area was o.k. She was treated with 6 months of chemo. In January or February of 2012 she said the doctor said she was in remission. It didn't stay in remission very long. In about June of 2012 there were 2 small spots on her liver and stomach. They started treating her with a different chemo. I don't know what. She doesn't remember the name of it. She said it wasn't combined with anything else and it started with a T. I've been doing research and I'm assuming it is taxol. Anyway,with this chemo after about 4 months her 125ca has gone from the 300's to 1000. I found this out today. She has had 2 blood transfusions and two blood clots were found in her lungs. They put her on an injection that she gives herself. It isn't coumadin, she says it starts with an S. She doesn't look up anything about it. She feels she can't take it I think. She is very weak, can't get up and down the stairs. Has had fluid drawn off her stomach twice. First 9 liters and about three weeks ago 6 liters. She has a lot of trouble eating. She gets really sick. She calls it her acid reflux. I think it is ascites. The doctor hasn't told her it is ascites. She thinks it is just the chemo. She said the doctor is going to change the chemo since her counts have risen to 1000. I guess my question is has anyone had a 125ca of 1000 and got it down again with uterine matastasis to the liver and stomach. She is my best friend of 35 years. I lost my mother 2 months ago. My only baby brother 2.5 years ago and my 26 year old daughter to leukemia 8 years ago and now my best friend is fighting for her life. Blessing to all of you. I am praying for everyone. Thank you. Ps, I don't know if her cancer is adenocarcinoma or upsc. She hasn't said, but because of the aggrwesiveness of it, I think it is UPSC. Thanks again.
They have got to find a cure for cancer, it destroys too many lives.
Adny

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm really not the one that can speak directly of this, but we have women here who have had very high - like your friend's- numbers and they have come down.

It sounds like they are still searching for the right mix or drug that will stop progression. It is so hard to watch a loved one suffer.

I am sorry for your friend and you too - going through this. Your friend is fortunate to have such a caring and loving friend. God bless you both.

With prayers and hugs, Mary Ann

adny's picture
adny
Posts: 6
Joined: Sep 2012

Thanks Daisy. So nice of you to reply.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I have had two recurrences since my diagnosis 1/09. Before I started chemo for the third time, my CA 125 was 3200. It had only been 7 months since my second round chemo. i had 7 treatments then. My recurrences has always involved enlarged lymph nodes. The cancer has not advanced to any organs. After 6 taxol/cisplatin my CA125 dropped to 60. Unfortunately as soon as I go off chemo my CA 125 starts to rise. It is 250 4 months. After my last chemo. My oncologist treats the results of the CAT scan, not the number of the CA125. I will have a repeat CAT scan this week and repeat lab next week to see if I still get a chemo break.

I too take daily blood thinner shots as I had multiple bilateral blood clots in my lungs. The shots are not fun, but if it keeps me from having a stroke, it is worth taking them.

I am sorry your friend is having such a rough time. She is lucky to have such a supportive friend. I will add you both to my prayers. In peace and caring.

adny's picture
adny
Posts: 6
Joined: Sep 2012

Thanks Ro. I just found out there was also a spread to rectum and pelvic area. Thanks for letting me know about the high counts. Thanks for the prayers everyone. I am praying for everyone's recovery.
love, Adny

HellieC
Posts: 425
Joined: Nov 2010

Hi Adny
Your friend is lucky to have you out there searching for help for her. I am fighting my third recurrence. It is in the pelvis. I have already had a hysterectomy, then a few years later radical pelvic debulking surgery. The blighter still came back. I am now on hormone therapy aimed at suppressing my body's oestrogen and "starving" the tumour. (some tumours are what they call "hormone receptive" which means that you can shrink them by starving them of the hormones they need to grow.)It might be worth asking if hormone therapy would be appropriate for your friend to try.
Thinking of you both
Helen

adny's picture
adny
Posts: 6
Joined: Sep 2012

Thanks Helen, I will mention hormone therapy to the family and they can at least discuss it with the doctor. They did a cat scan this morning and I guess she will probably know the results Monday.

Adny

soromer
Posts: 130
Joined: Mar 2011

but I still wanted to wish your friend (and you) the best.

I am so terribly sorry that you have endured such losses to cancer. My oldest is now 27. I can only imagine how painful it is to have to let go.

If your friend is willing for you to be her advocate, and you are willing to do it, that would be a great gift to her. But you know that already, I am sure.

Peace and blessings to you both.

soromer/Kate

adny's picture
adny
Posts: 6
Joined: Sep 2012

Thank you for the well wishes soromer. She has decided to move with her family on the east coast. We are in the mid-west. She will move in 2 weeks, just in time to start new chemo. I appreciate the well wishes and responses so much. Thank you

love
Adny

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