stage 4b grade 3 upsc any survivors out there?

joygirl529
joygirl529 Member Posts: 12
in Uterine/Endometrial Cancer #1

My mother was diagnosed in October 2012 with stage 1 grade 3 uterine cancer. Radical hysterectomy with Omentum removed. 3 rounds brachytherapy and told she was in remission. In May 2013 we ended up in the hospital with ascites ( fluid in the abdominal cavity) news that it was now stage 4b with malignancy in abdomen and multiple organs in that region.  She handled 8 rounds of carbo/toxal that took her ca125 from 12000 (yes thousands) to 111 and dried up her ascites. Within 8 weeks ca125 back up to 1200...now over 6000 after the first round of Doxil. Going to the dr tomorrow because she's having signs of her acsites returning and just feeling like the Doxil is not working. She's due for round 3 of Doxil. Just wondering if anyone has a similar situation and what happens next? She's 69 years old.

Comments

  • nempark
    nempark Member Posts: 681
    #2
    Your Mom

    So sorry about your mom.  I have no advice for you but to wish you and mom the best.  Anyway, I know the many warriors on this site will get back to you.  I am wondering when your mom had her surgery if she was given any chemo or was it just brachy therapy. My Gosh, this cancer is really an enemy to mankind.  Be well joygirl, and keep strong for your mom.  Please let us know what the Dr. says.  

  • joygirl529
    joygirl529 Member Posts: 12
    #3
    thank you

    thank you, they only did the brachytherapy after the hysterectomy because they thought it was stage 1. 16 nodes were checked and were clear. We didn't find out till May that it must have been hiding out somewhere.

     

  • nempark
    nempark Member Posts: 681
    #4
    Chemo

    Hi I just read your response.  I was dx with Stage 1A grade 3 and my first Doc. said to me that if you have to choose cancer this is the one you will choose (idiot) you will do a quick hystertomy and done, no chemo.  Second opinion, did the robotic and did a complete hyst with removal of omentum.  He then said to me after that to be on the safe side because this is such an aggressive disease to do 6 sessions of carbo/platin. I did it in 2010. So sorry that you and your mom have to face this.  This is a disease that changes your entire life. Take care of yourself and do your best to prepare for what ever life at this time throws your way.  Somehow what ever the situation is we get stronger and manage to cope.  Unbelievable but true.  Take care of yourself, stay close to mom and give her all your love and support. In 2011 my beautiful daughter was dx with cancer and struggled for one year until she passed in 2012.  I thought I would just curl up and die.  But it is true that you do get stronger and as times goes by it seems easier but the hurt and sadness remains.  You tend to manage better with time.  

  • Ann55
    Ann55 Member Posts: 48
    #5
    I am on doxil now and was

    I am on doxil now and was told prior to receiving it that the drug itself will make my ca-125 go up sharply and that they will be able to tell if it is working after 4 treatments so they will repeat the ct scan at that time. So don't give up hope on the drug just yet. 

  • joygirl529
    joygirl529 Member Posts: 12
    #6
    update

    thank you ladies for your repsonses. We went in yesterday, had bloodwork and saw the dr. Went up to infusion and was told ca125 more than doubled again...to over 12,000 To say the least we were devistated. CA125 is back up over what it was when we found the recurrence. They did a sonogram and found her ascited has flaired back up. They drained 2.5 liters off her abdomen and sent us home. They say they are going to put her back on carbo/taxol next week with a another dose of taxol alone a week after that. It helped her numbers a lot last time but it was back within 2 months. I thought that meant it's platinum resistant. Just confused now on why they aren't trying something else....

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #7
    joygirl529 said:

    update

    thank you ladies for your repsonses. We went in yesterday, had bloodwork and saw the dr. Went up to infusion and was told ca125 more than doubled again...to over 12,000 To say the least we were devistated. CA125 is back up over what it was when we found the recurrence. They did a sonogram and found her ascited has flaired back up. They drained 2.5 liters off her abdomen and sent us home. They say they are going to put her back on carbo/taxol next week with a another dose of taxol alone a week after that. It helped her numbers a lot last time but it was back within 2 months. I thought that meant it's platinum resistant. Just confused now on why they aren't trying something else....

    Joy girl

    So sorry to hear about your Mom.  I do believe that cancer is just as hard on caregivers.   I too am surprised they Re repeating the carboplatin.  I thought if you recurred within 6 months after you last dose of a platin you were resistant to platinums.

    i know I read where the CA 125 increases with the first doses Of Doxil.  Sorry your Mom is having problems with ascites, too.   There are other drugs to try.  Hopefully one of them will be successful for her.   I will keep you and your Mom in my prayers.  Take care of yourself, so you can be there for your Mom.   Wishing you both peace and comfort.

  • pinky104
    pinky104 Member Posts: 574 Member
    #8
    I am a survivor of stage IVb

    I am a survivor of stage IVb grade 3 UPSC.  I was considered grade IVb because the cancer had gone outside of the pelvis.  It had spread to the omentum, the small intestine, and both ovaries, but fortunately, not to any lymph nodes.  I had surgery with removal of all the cancer my gyn/onc could find, then I had 6 rounds of carboplatin and taxol.  In May, I will be four years out from the date of surgery and I've been showing no evidence of disease.  I hope this gives you some relief.

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #9
    what a great story!

    Pinky did you receive any radiation? I am nearing the end of my chemo and I am considering bypassing radiation, both internal and external. I was diagnosed in Oct 2013 with UPSC  stage 2 grade 3 with cervical involvement. I am having a great deal of neuralgia symptoms as well as extreme  tiredness. I am reluctant to risk the many side  effects of radiation.

    Thanks, Sandy

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
    #10
    Sandy3185 said:

    what a great story!

    Pinky did you receive any radiation? I am nearing the end of my chemo and I am considering bypassing radiation, both internal and external. I was diagnosed in Oct 2013 with UPSC  stage 2 grade 3 with cervical involvement. I am having a great deal of neuralgia symptoms as well as extreme  tiredness. I am reluctant to risk the many side  effects of radiation.

    Thanks, Sandy

    I had brachytherapy in Oct of 2012 and if I had/have side effects, I'm not aware of them.

  • pinky104
    pinky104 Member Posts: 574 Member
    #11
    Sandy3185 said:

    what a great story!

    Pinky did you receive any radiation? I am nearing the end of my chemo and I am considering bypassing radiation, both internal and external. I was diagnosed in Oct 2013 with UPSC  stage 2 grade 3 with cervical involvement. I am having a great deal of neuralgia symptoms as well as extreme  tiredness. I am reluctant to risk the many side  effects of radiation.

    Thanks, Sandy

    Radiation

    Sorry I didn't reply before.  I don't get on here frequently.  I did NOT have radiation.  From what I've heard, they don't do radiation on stage IV cancers because they are too widespread.  I had a good surgeon, so I think he may have gotten pretty much all of the cancer, and the chemo killed most of whatever was left.  My last CA-125 was 7.3.  I know from what I've seen on here there are many side effects from radiation.  Have you had a blood count lately?  You might have chemo induced anemia like I did.  I had to have a blood transfusion for that.  Three months after chemo, I was still tired (and short of breath), so my family doctor did another blood count.  He found I was only slightly anemic at that point.  He decided to check my ferritin level.  It was supposed to be under 150 and it was 962.  My oncologist later did genetic testing on me and found I had hemochromatosis (a genetic condition that causes the body to store too much iron).  I had to have a series of phlebotomies after that to get rid of the iron.  My body didn't react normally because of my chemo and I ended up anemic again.  I couldn't have any more transfusions, so I had to just live with it for awhile. I've been better since then.  I do have a thyroid condition which has made me tired at times.  I also have the neuralgia.  That got better after awhile, and now, almost 4 years out, it's getting worse again.  I know I have a little arthritis, so that may be contributing to it.  I'm 65, so I have to expect that.

    I wish you luck with your decision and your UPSC.

     

  • jazzy1
    jazzy1 Member Posts: 1,379
    #12
    pinky104 said:

    Radiation

    Sorry I didn't reply before.  I don't get on here frequently.  I did NOT have radiation.  From what I've heard, they don't do radiation on stage IV cancers because they are too widespread.  I had a good surgeon, so I think he may have gotten pretty much all of the cancer, and the chemo killed most of whatever was left.  My last CA-125 was 7.3.  I know from what I've seen on here there are many side effects from radiation.  Have you had a blood count lately?  You might have chemo induced anemia like I did.  I had to have a blood transfusion for that.  Three months after chemo, I was still tired (and short of breath), so my family doctor did another blood count.  He found I was only slightly anemic at that point.  He decided to check my ferritin level.  It was supposed to be under 150 and it was 962.  My oncologist later did genetic testing on me and found I had hemochromatosis (a genetic condition that causes the body to store too much iron).  I had to have a series of phlebotomies after that to get rid of the iron.  My body didn't react normally because of my chemo and I ended up anemic again.  I couldn't have any more transfusions, so I had to just live with it for awhile. I've been better since then.  I do have a thyroid condition which has made me tired at times.  I also have the neuralgia.  That got better after awhile, and now, almost 4 years out, it's getting worse again.  I know I have a little arthritis, so that may be contributing to it.  I'm 65, so I have to expect that.

    I wish you luck with your decision and your UPSC.

     

    Doxil

    Note, doxil has a tendancy to raise the CA125 at later treatments and eventually it will come back down.  Happened to me and finally marker is coming back down after #6 chemo.  These drugs are good in many ways, but very harsh and can cause more health issues.

    Best to you

    Jan

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