Update from me...

Flufff Member Posts: 67
edited October 2020 in Uterine/Endometrial Cancer #1

Hi all. 

Ive been away for a while. I'm doing weekly Topotecan. 3 times weekly, one week off. Just had my #4 yesterday. 
My CA125 was 600 before treatment started. Had my blood drawn on August 28th. Its now 1410 after the first 3. 18 chemos planned.. So I guess it is not working. Unless this topotecan is taking some time working. But I dont think so. Not with that increase. 

Next option is weekly taxol. Who has done that and how was it? Did it work?

My cancer is primarily in the abdomen. Probably why the CA125 is that high. I've been looking into HIPEC as well. Anyone had that done?

There is a trial heee on T-cells. It sounds like a rough patch, but if it does what is should? Not sure I can get in that trial. Right now I'm looking at options. I'm only 49.... I can't die now :(

I need some word of encouragement <3


Cheers from Fluff


  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited October 2020 #2
    Fluff, It was so nice to see

    Fluff, It was so nice to see your face again!  So sorry it isn't better news.  What is your oncologist telling you? 

    I did weekly Taxol and Carbo for my first 6 IV infusions. While the side effects were less severe, I didn't have many good days. So, I switched to the standard larger dose every 3 weeks. This may be completely different for you. I was under the initial standard care of treatment. 

    I don't have any experience with the treatments you are asking about. I'm hopeful someone will be along shortly that can give you the information you are seeking.

    Please don't give up! There are so many different treatments these days. I pray you find the perfect one to get you to NED.

    Love and Hugs,


  • MAbound
    MAbound Member Posts: 1,166 Member
    Hi Fluff,

    Hi Fluff,

    You sure have had a rough road with your UPSC and I'm so sorry to see that your CA-125 went up in spite of what you've recieving. UPSC is tough to beat back and you were diagnosed at such an advanced stage. Taxol and carboplatin tend to be used together in frontline chemo for most of us, so it is a doable and effective treatment. Some of us have no problems with it and others have a rough time. I guess it depends on what underlying issues you have when you go through it. The doctors have tricks in the bag to help you cope, though. I was switched to another drug in the same class as taxol...taxotere...and handled the rest of my infusions much better. They can also play with the dosage and infusion rates to help you tolerate it. Be sure to ice your feet and hands during infusions to keep neuropathy at bay and drink tons of water to prevent the constipation it causes, especially with your history of obstruction. Taking Miralax once or twice a day helps, too.

    I agree that you have so much to live for at 49, so it is good that you are still fighting. It never hurts to look into and apply for trials if you are willing to be a trail blazer. We all owe so much to those who have gone that route. Whatever path you choose, we will walk down it with you. 


  • Forherself
    Forherself Member Posts: 900 Member
    edited October 2020 #4
    Aw Fluff

    Sorry to hear this.  I still don't trust CA 125 however.  Is there soomething else that indicated the drug is not working?   Did they do a scan?   I remember others here whose CA 125 was wildly off.   I hope this is the case.  I'm glad to hear you are feeling ok.   And thank you for checking back in.  You are in my good thoughts every night.   Hugs


  • Yeo
    Yeo Member Posts: 25 Member
    Hi Fluff, rough stuff to deal

    Hi Fluff, rough stuff to deal with for sure but there is always hope - always - always!  My CA 125 has always been within the normal levels, yet I had late stage cancer, so they are unpredictable for sure.  So I would suggest focusing on treating yourself really well, staying mentally present and rest, knowing everything changes.  I am sending love and prayers your way.


  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Hello Fluff:

    Hello Fluff:

    I hadnt been on here much either but wanted you to know I am sending you prayers and hugs.   I don't have any information to give you.  My CA125 wasn't an indicator for me at all.  I wasn't able to handle Taxol and so they switched me to Gemzar and Carboplatin.   

    Just wanted you to know that we care!  HUGS!!


  • Fridays Child
    Fridays Child Member Posts: 271 Member
    edited October 2020 #7
    Hi, Flufff,

    Hi, Flufff,

    Sorry to hear your count went up but I've read that there are a lot of reasons it can increase so I wouldn't give up on it yet. They've never used that test for me so I can't help there.

    If you decide to do the Taxol, I had a low dose Taxol and Carboplatin once a week for 5 weeks concurrent with my radiation, after which they started the full dose treatments every three weeks.  It made me tired, but I continued taking care of my then two year old grandchild twice a week throughout treatment.  My hair got thin on the low dose and then came out altogether with the full dose treatments.

    My treatments were for a recurrence and metastasis of endometrioid, not UPSC.  I got good results and am now considered stable, but it's not gone. 

    Good luck and thanks for the update.  Let us know what you decide to do.

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    I'm sorry you're not getting

    I'm sorry you're not getting better news. I didn't have those particular chemos. I couldn't desensitize to taxol so ended up with 7 rounds of adriamyacin and carboplatin. My cancer was 3a but not upsc.

    When I couldn't desensitize to the taxol I was in tears at the infusion center thinking that nothing would work. The wonderful nurse reassured me that there was 1000's of chemo combinations they could do and something would surely work for me. 

    Praying for you. 




  • zsazsa1
    zsazsa1 Member Posts: 562 Member
    edited October 2020 #9
    Dear Fluff, I am so sorry

    Dear Fluff, I am so sorry that the topotecan doesn't seem to be working.  Are they going to confirm this with an imaging study?  I have heard of decreasing Ca125 under chemo while the cancer was spreading, but I've not heard of increasing Ca125 while chemo is working (although it does go up with any type of inflammation).  I had taxol every three weeks, together with carboplatin, and it sucked, but I've heard that weekly lower dose taxol is not nearly as bad.  You might want to pop on over to the ovarian cancer website.  There may be women there who can tell you about their experience with weekly taxol.

    I don't recall, but did you have Carbo/Taxol as the initial chemo?  How long ago was that?  That may help your decision about whether Taxol would be helpful now.

    Sending you supportive vibes, and hand holding as you fight this battle.