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My Mom was diagnosed with UPSC, stage IVB in April

here_for_my_mom
Posts: 1
Joined: May 2009

Hi everyone, I'm looking for some info. to help my Mom. She's 71. I'm new to this site.
See my profile for details. Thanks.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Warmest welcome! I'm so sorry about your mother. I was unable to access your profile so far, so I'm not sure what questions you may have about your mother's treatment. Has she had her surgery and does she know whether she'll be having chemo and radiation? The best way to quickly learn all about UPSC is to read the various threads about it on this Discussion Board. You can use the SEARCH box, plugging in key words, to take you to specific discussion topics. Or just post again and ask your specific questions.

For now, BIG HUGS, & welcome!

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi - I'm with your mom. I had stage one - they performed surgery three years ago and said I was fine. I continued having pelvic pain after surgery and they took two years to figure out why. Then it was too late. I've had chemo and just finished radiation. I'm feeling okay - but doc has told me that there will not be a cure. I've come to terms with that and am actually really into it now. I plan - made a will - found homes for my kitties - give away my stuff - it's okay. I think when I think of the alternative - live, but am constantly in pain - an old lady in a wheel chair - I think this is better. I'm 61 and have been given about a year to live. Get your mom to help plan - planning keeps me busy and productive! I still also work full-time (I'm a teacher). Accepting death is difficult - but once you do, everything is much easier.

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

Wow, what a story. I'm also 61 and have UPSC. I've thought about death but have not made the plans like you have. I need to though. I think it is good to be prepared and know that you have your affairs in order. I'd like to know more about how you came to terms with death and managed to accept it.

I've mentioned this several times before on this site. I don't want to sound like a nag....but...If you are open to alternative ideas - the mind-body connection - I recommend the book "Getting Well Again" by O. Carl Simonton. He wrote it in 1979, when he was a radiologist at a cancer center in TX - maybe MD Anderson. He did research with terminal patients who had exhausted all conventional treatment. Through meditation and guided imagery many of his subjects went into remission and many lived longer with a better quality of life. The book was fascinating to me and I have used the techniques which I believe helped me manage my treatment with little side effects.

Thanks for sharing. I'm interested to hear more from you.

God Bless. Mary Ann aka Daisy

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Daisy - Wow - after I submitted my reply I thought I might get blasted. Thanks for understanding. I don't know how the acceptance happened - it was gradual. Now I feel fortunate to know - the old saying of nobody knows when they are going to die has always scared me. Also, I've been more afraid of altzheimer's then death, as it runs in the family. I felt relieved when I knew I didn't have to worry about that anymore. Also, I have to admit that I've always been a devoted fan of Jackie O - she died of cancer at @64 - so I thought if Jackie can do it gracefully, so can I. My daughter, and stepdaughter were upset at first, but they've gotten used to it now - as have my friends. Everyone is very helpful!! It makes me feel lucky all the time.
What stage - grade do you/or did you have?
I tried some alternatives before having radiation - but they didn't work.
I do want to do more yoga - as regular exercise is now to exhausting.

deanna14
Posts: 734
Joined: Oct 2008

Lociee, I didn't reply earlier as I was not sure how I felt about your post. I guess that acceptance is good, but what about HOPE. There is no person or doctor on this earth that can tell me when my time is up. I feel like no one should live without hope. I think getting ones affairs in order is always a good idea, but I'm afraid there is a fine line between acceptance and giving up. I guess I am just not there yet and pray that I won't have to be for a really, really long time. I was Stage IIIC and am 39 years old... I've got a lot of living left to do! Personally, I choose HOPE. The Great Physician is the only one who knows when and why I will be taken to my eternal home! I guess we are all entilted to live this journey in our own way. I will continue to pray that all of us on this board have many happy years of life left to live, despite the statistics.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Deanna - I'm sorry if I offended you. At 39 you should definitely keep HOPE alive. I think 61 is different. I've lived a full life and am very grateful. There is nothing I've left undone. I will pray for all, but also be accepting of what happens. Who knows - maybe I'll surprise everyone, including myself, and life for several more years!

Ro10's picture
Ro10
Posts: 1429
Joined: Jan 2009

I too choose HOPE. I think everyone has to come to terms with their diagnosis. But I too choose to have HOPE that all of the treatments are going to work. I too have stage III-C and am 60 years old. I feel I have had a very good life and have been blessed in many ways, but still hope I have many more years. I too pray that all on this discussion board will have many years to live.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have great hopes of living another 30 years and coming out of all of this treatment clean and cured. I actually believe I can pull that off!

But I have also come to terms with the possibility of recurrance and early death. I made a will and I incorporated my business so that it could be transferred to my children, as my husband has no interest in running my company. I've started training people in the aspects of the company that I run myself, and am writing a manual for running my business. I've chosen a beneficiary for each of my more vauable possessions, and have decided to give the items to them if I ever have a recurrance (God forbid!), right after the diagnosis. I'll go back into treatment with any recurrance and fight on, but I will be prepared.

That may be a surprise for those of you who know me as a sincerely optimistic and hopeful person. But I have given it a lot of thought, and although I want to live FOREVER, I could honestly make 5 years be ENOUGH if that's all I have. I could create memories for my grandchildren and help everyone I love find peace with the inevitability of death for all of God's children. (For as surely as winter follows autumn, even those without cancer will one day die.) And I plan to live as if that's all the time I have, with JOY and VIGOR, making every moment count. Then when the decades roll on, I'll be ahead of the game!

:D

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Amen to you Linda, Amen!

cherylduvall
Posts: 6
Joined: Sep 2009

Hi, my mom was diagnosed with stage IV pappilary serous Uterine cancer a few weeks ago. They did a debulking surgery and gave her a poor prognosis. Her CA-125 was 1470 befor surgery and 914 after. My sisters and I knew we had to do more and began to research. We are doing a regime of natural treatments that include B17, Essiac tea and Agaricus mushroom as well as taking suppliments and eating whole foods and taking Cell Food. So far, she has had positive results. She starts chemo this week but is staying very positive. Her swelling has completely gone away as well as constipation and her pain is more manageable. I would love to stay in touch. She is 63 and has been very active and healthy until this. She is NOT ready to give up. :)

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm so sorry about your mother, Cheryl. UPSC is so sneaky and so often found in advanced stages because of it. The chemo is very do-able if she is healthy otherwise with no concurrent other health problems. Be sure and disclose all herbal remedies that may be in your mother's system to your chmo oncologist and be ready to suspend using them during the period of time when she is in chemo, as there can be drug interactions. (You can start them up again when chemo is over.) Up the fiber all during chemo; as it is critical and a challenge to keep from getting constipated. As the chemo compromises your immunity and platelets it is vital (!!!) to keep bowel function as normal as possible.

I am 56 and have Stage 3-c UPSC and finished my initial treatment protocol (debulking surgery, 6 rounds carbo/taxol chemo, 28 rounds external pelvic IMRT radiation, & 3 rounds internal vaginal brachy radiation) July 1st and am in complete remission, no evidence of disease and CA-125 in normal range now. I feel wonderful and have only a tiny bit of lymphodema in one foot that doesn't hamper me doing anything I want to do. Stage 4 UPSC is treated a lot like ovarian cancer, as a manageable 'condition', so you may want to lurk or post on the Ovarian Cancer Discussion Board here also, as many of us with UPSC do. The courage and optimism of those women who go from chemo to chemo is inspiring and comforting.

There is a SEARCH feature to this Discussion Board, and I encourage you to use it by plugging in key words to help you answer your questions as there is a wealth of information and research archived here. BIG HUGS!

Kris Ann
Posts: 26
Joined: Jan 2009

Hi Cheryl.

My mom was diagnosed with the same thing.. and she is also 63.. stage 4 uspc/clear cell. She is okay right now. There is hope. I wrote to you on a different thread also. Sometimes i find this site hard to navigate. thanks.

california_artist
Posts: 850
Joined: Jan 2009

There's a place on the side to the left that, CSN Feedback, you can mention to them that you have difficulty, I did. could be why they were down for a bit yesterday.

Aren't we all just marvelous?

cherylduvall
Posts: 6
Joined: Sep 2009

Hi, my mom was diagnosed with stage IV pappilary serous Uterine cancer a few weeks ago. They did a debulking surgery and gave her a poor prognosis. Her CA-125 was 1470 befor surgery and 914 after. My sisters and I knew we had to do more and began to research. We are doing a regime of natural treatments that include B17, Essiac tea and Agaricus mushroom as well as taking suppliments and eating whole foods and taking Cell Food. So far, she has had positive results. She starts chemo this week but is staying very positive. Her swelling has completely gone away as well as constipation and her pain is easier to manage. I would love to stay in touch. She is 63 and has been very active and healthy until this.

california_artist
Posts: 850
Joined: Jan 2009

Natural Compounds in Cancer Therapy. It's not light reading but it will help. You might want to enlist the help of friends to get all the reading done quickly.

Best Wishes,

claudia

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

I'm Stage 3a - high grade - UPSC. I had 6 rounds of chemo (taxol/carboplatin) but no radiation ordered - because my doc said "I don't see any need for it" - I'm having faith that he is right!!!! I'm NED and in surveillance since April.

Mary Ann aka Daisy

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Linda, I like your use of the word - possibility. I think it is important to face and prepare for "Possibilities". You certainly have done
that. Like you, I also enjoy my time more - because it might be short. For instance, I spend time marveling at how the sun filters through the living room windows into the kitchen. Little things. Once a made a list of things I would miss when I was dead. They were all simple things- like my kitty, Little Sweetie, purring at my side as I fall asleep - and of course, the filtering, glimmering sun - and new
shots on the lillies.
Your optimism is encouraging to all of us. You are a wonderful coach! I have noticed your dedicated concern and involvement with
all who post here. We thank you.

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Lociee...the word cancer when it's spoken out loud the first time, stopped us all in our tracks; death suddenly became a reality; when in fact it was the reality all along; you seem at peace with your decision and at 61 years old myself I can relate to your acceptance of the inevitable; of course I wish for more years to live and love; cancer has certainly opened my eyes WIDER to the joy of being human; I always had an appreciation for the finer things in life..a purring cat, sunlight through the windows; new plant growth is always a special thrill; I may be out of line but I believe this life is only a way station to a more fantastic reality; you won't be missing anything when you pass on; you'll be too busy having a great time; it's too long a story to tell how I KNOW, but suffice to say my recently deceased mother told me in a vivid dream "I'm in a better place now"; I hugged her and felt a very profound sense of peace; this life is not the end but the beginning; cancer is also a new beginning for many of us; we are changed by the challenge and made stronger in our hearts; Bless you
Marie

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

I think everything is "in line" in the discussion board. I liked your info - and I will choose to believe it!!!

I'm in BOTH CAMPS too. I am hopeful AND accepting (I don't think we need to chose one or the other) and I agree with you, Marie, that I notice things more, appreciate things more, and think that I am a better and more peaceful person because of this journey. I pray to God to let me live and continue to be of service in this world.

Kudos to Linda, I'm still dragging my feet on the legal stuff. It's hard to face the reality of it but I think it will be a relief to get this behind me.

Thanks to all who have participated in this discussion. It's so real and good stuff!!

Hugs and prayers, Mary Ann aka Daisy

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