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My mom is suffering with USPC

Leia
Posts: 10
Joined: May 2011

Aloha all

My mom is suffering with uterine serous papillary carcinoma. She is currently undergoing chemotherapy afer her first recurrence. She had over 2 years in remission following a somewhat convoluted course of diagnosis and treatment. I am looking for any and all women currently living with this diesase in hopes of sharing in the wisdom of your experieince. I am hoping to get my mom on here but for now she is too ill and I am on here for her with her blessings. Currently taking FMLA in order to help in her care.
thank you all and God Bless
Leia

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

There are many of us here with UPSC. I was diagnosed Sept '08 and had recurrence a year after treatment. It's now 6 months post tx and I see doc next week -got my fingers crossed.

Two years before recurrence is usually a very good sign. We would love to meet your mother here - it's a very supportive and educational community on this site. Check out the earlier threads.

I wish your mother speedy recovery. She is in loving hands with you. Mary Ann

Leia
Posts: 10
Joined: May 2011

Thank you so much for your reply. I am currently on family leave helping care for my mom. She is in the midst of chemo right now . I am trying to encourage her to eat and keep her spirits up.
I have a question for any of the women on these boards . I would like to know if your doctors check CA 125 during chemo treatments to monitor progress . If so, how often, if not is there any way they check to see if all of this chemo is doing anything ?
Thanks so much
Leia

Leia
Posts: 10
Joined: May 2011

Thank you so much for your reply. I am currently on family leave helping care for my mom. She is in the midst of chemo right now . I am trying to encourage her to eat and keep her spirits up.
I have a question for any of the women on these boards . I would like to know if your doctors check CA 125 during chemo treatments to monitor progress . If so, how often, if not is there any way they check to see if all of this chemo is doing anything ?
Thanks so much
Leia

Leia
Posts: 10
Joined: May 2011

Thank you so much for your reply. I am currently on family leave helping care for my mom. She is in the midst of chemo right now . I am trying to encourage her to eat and keep her spirits up.
I have a question for any of the women on these boards . I would like to know if your doctors check CA 125 during chemo treatments to monitor progress . If so, how often, if not is there any way they check to see if all of this chemo is doing anything ?
Thanks so much
Leia

Leia
Posts: 10
Joined: May 2011

Thank you so much for your reply. I am currently on family leave helping care for my mom. She is in the midst of chemo right now . I am trying to encourage her to eat and keep her spirits up.
I have a question for any of the women on these boards . I would like to know if your doctors check CA 125 during chemo treatments to monitor progress . If so, how often, if not is there any way they check to see if all of this chemo is doing anything ?
Thanks so much
Leia

Leia
Posts: 10
Joined: May 2011

Thank you so much for your reply. I am currently on family leave helping care for my mom. She is in the midst of chemo right now . I am trying to encourage her to eat and keep her spirits up.
I have a question for any of the women on these boards . I would like to know if your doctors check CA 125 during chemo treatments to monitor progress . If so, how often, if not is there any way they check to see if all of this chemo is doing anything ?
Thanks so much
Leia

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

mine was checked during chemo and for every checkup with doc since then.

minniejan
Posts: 88
Joined: Dec 2010

Hello,

Bless you for caring for your mother. My daughter, an oncology nurse at a big teaching hospital (not the one I went to), helped me through my recent bout with UPSC. She was there every single step of the way, and went to each and every chemo treatment with me and I credit her with so much of my own progress. She has been my rock, my angel and my lifeline these last 6 months. Unfortunately she is now looking to get out of oncology and into something a bit less stressful in nursing! It was a career she loved until I was diagnosed. But it hit a bit too close to home for her. I have just reached the stage where I was told to come back in 3 months and that the chemo and radiation did its job. And my CA 125 was checked after each chemo too, I believe that was your original question. Unfortunately they did not get a baseline, so the only numbers I have to go on is after each chemo.

Again, bless you for being there for your mother. Minniejan

Leia
Posts: 10
Joined: May 2011

Thank you so much for your replies all !!
My mom is getting combination carboplatinum/taxol every three weeks. Her last CA 125 was in April prior to surgery to remove her omentum for her first recurrence.
She is scheduled for her second round of chemo next week. I had asked her Oncologist to repeat her CA 125 recently but he declined. Are both of you getting it checked every three weeks during chemo ? also do you have CT or PET scans during chemo to check disease progression.
My mom is meeting with her Oncologist on the 29 th so would like to ask him again for these things.
Thanks so much everyone. I am trying to keep her spirits up.
God Bless you
Leia

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

I know that there is so much anxiety right now. I would just say that "in rerospect" - 2.5 years down the road from where you are now and having a recurrence under my belt - I have resolved that I need to have a level of confidence in my doc's decisions (always after I have asked my questions of course). There are times when we need to allow the treatments to happen and do their job. ca125s and scans won't tell much until treatment is done. My doc monitored ca125 but decided to wait for scan until I was done with chemo instead of doing midway. I was ok with that 'cause it sounded reasonable.

Ask doc why he is not doing ca125. If you still want it, I would request that he do it to give you that added info and peace of mind.

For me right now, I have asked my doc to NOT disclose my ca125 results unless I NEED to know them. The stress of thinking about those numbers can just give unnecessary angst.

I hope my 2cents is helpful for you. Wishing you peace and healing. Mary Ann

Leia
Posts: 10
Joined: May 2011

Thanks so much for your response. I can see your point. I think what bothers me and my mom is the percieved attitude of her oncologist. We both felt that he is feeling that her cancer is a hopeless case, a sort of "why bother" type of attidude when it comes to monitoring during treatment. That may not be the case, but is how we both felt after leaving his office recently.
I will ask again prior to her next visit. I am flying home to my children tomorrow so will need to email him. Have been off of work a month so need to get back for a little while but intend to stay involved in her care and return soon to help care for her. Just want to feel that everything that can be done is being done for her as I live very far away from her and feel helpless.
thanks for your sharing
Aloha
Leia

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

Wow - that's got to be a terrible feeling. If it was me, I would have a frank conversation with the doctor about everything - your feelings, his perceptions/prognosis etc. It may be worth a second opinion. I have great faith in my doc and asked him early on about his treatment philosophy.

Your mom has options - SHE is the customer. She does not have to "settle" for doc who sees her as hopeless or "why bother". She deserve better than that.

May you and your mom have strength and peace and caring (as Ro always says), Wishing all the best. Mary Ann

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Sometimes my daughter would stay with me for chemo and it would make cry all the love we having batting around here. It's hard being in your position but I know your mother loves you and really appreciates you. Take some time out for yourself too.

Songflower

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I had the same protocol with chemo as your mom and my marker was taken prior treatments and before each chemo session which was every 3 weeks. At the end and thru each follow-up appt the CA 125 is taken as well. He can follow mine as it has shown continual improvement and today staying the same (knock on wood!)

Wondering if the doc yes is not thinking mom has a chance, but then if he's a good doc we all have a chance. I've seen people with stage 4 and given a year to live, are beating the odds as living 7 years past the time they were to leave us. Docs don't know. I'd surely question this doc.

You know if not have the comfort with him/her, get a second opinion, as it might put your minds at ease.

Best to you and you're commended for caring for your mom....she's lucky to have a wonderful daughter!
Jan

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