UPSC diagnosed July 2010 - 2 surgeries, 2 chemos 2 radiations

txtrisha55 said:

Sorry to hear of your

Sorry to hear of your recurrance. There are a lot of women on this site that have and are still going through different rounds of chemo treatments and are on their 2 and 3 round of recurrance. I cannot image that your dr has said no more chemo or is it just that chemo she does not want you to have again. But if it worked why not use it again? Good Luck on finding the answer and working on a third choice of treatment. Will add you to my prayer list. trish

Goldamillie said:

Thanks everyone
Today ONC/GYN says we will start chemo 2wks of treatment with 2 weeks off - with Genzar/carboplatin and try to contain/shrink it in the liver. Enough taxol for now I guess - that chemo is truly toxic for me. I need to recover from the radiation treatments. They are the worst on the body - duh?? Couldn't I have just hugged a nuclear warhead??? Just kidding.

Sorely miss my former firecracker energy! Kind of ticks me off, ya know?

UPSC is a sneaky mean little bugger of a cancer and hard to deal with as there is not a whole lot of research because it is kind of rare.

Goldamillie said:

Sigh!
having second thoughts about Genstar/carboplatin chemo treatment. Looking back the UPSC that began (who knows when?) in my uterus and filled it up like a Santa sack, spread to a couple of lymph nodes before it announced itself by a tiny little spotting (July 2010) gave me no symptoms whatsoever and I felt great per usual. Ever since I have tried to fight it with surgeries, chemo and radiation my health/vitality has declined. It feels like the treatment destroys me more than the cancer, ya know?

Now, because there is such little information about UPSC because of it's rarity, I am to try Gemzar or Gemstar with a little carboplatin. I am thinking maybe I could just decline the chemical treatment until my next CT scan in a couple of months so I can have some energy to enjoy the fall and holidays. Doc said tumors usually grow quickly and then level off in growth. I am coming to realize UPSC will take me out eventually. Please don't let my super realistic attitude make anyone feel down. I am just thinking perhaps it is time to stop beating up my previously strong body which TREATMENT is making a whiny irritating drag.

Anyone have an opinion re: this idea to let my body try to recover from all the treatments - just until Jan 2013 when I get a CT scan? Remember what turned out to be liver mets began DURING my August radiation therapy (CA125 jumped from 30 (6/29 just after chemo to 60 during radiation). Most recent CA125 jumped to 240 with the CT detection of liver mets. See what I mean? Chemo -- feel worse maybe to no avail - hope this makes sense.

thanks to everyone for hanging in there - I wish all the best -- just trying to figure out how to live the rest of my life feeling vital and not destroying what vitality I have left with chemo wishing for a miracle. Maybe a miracle is possible without chemo - see what I mean?

Anyone ever just want to yell - Enough already!

daisy366 said:

Goldamillie
Well, this is a good conversation. When to treat and when not...

Scan should spread of UPSC in lymph (2 areas) in December. Had biopsy in Jan and then tissue assay. Started hormone therapy (trying to use least invasive approach) in March. Then I worked on alternative therapies (energy healing and then diet). Along the way my ca125 crept up 10 points a month until July when it started rising more sharply. I resisted return to chemo for 2 more months while I pursued the alternative route. So hopeful. By Sept PET showed total spread in lymph system. Now I feel guilty that I waited. The alternative route did not help (maybe it did somewhat but who really knows).

I don't know what to say. I am totally fatigued with the doxil and I'm listless. Sometimes I wonder if I will regain strength or just continue to spend my days on the couch. These are hard decisions. When is enough enough.

In my case, it seemed that the ca125 started jumping very fast - did I wait too long? Did the UPSC get so strong that it will now go to organs? Will I be able to fight this now?

I've turned to a yoga instructor for help. Will work on meditation to help get me more in positive mindset and focus on healing and helping me body. There is a connection I believe in mind-body.

I wish you all kinds of health, Goldmillie. In mind and body.

Hugs, Mary Ann

beila said:

fatigue
Mary Ann

more concerning than your fatigue is your despair about it.
Have you been EXAMINED by your MD to make sure there is nothing medical causing the fatigue (such as congestive heart failure), and just normal chemo fatigue?

If anything serious is ruled out, I would hang in there if I were you
Perhaps you will respond to the Doxil, the fatigue will eventually improve, (it may take months), and it will have been worth it, NO?

Meanwhile change your lifestyle around the fatigue...eg some sort of project involving laptop, good movies, perhaps learn to knit or crochet,etc......always keeping in mind that this is temporary

A friend of mine had this on Doxil...and then had some fatigue for 6 months...that was 5 yrs ago for a breast ca recurrence.
In recent years she is completely back to her premorbid self...a ball of fire with an energy level like Lance Armstrong! (but without the steroids)

my point is, 1st get medically checked for other causes of fatigue, then if neg, learn to live with it for awhile, with your eyes on the prize.
It doesnt sound to me that this is the time for you to give up

Just my impression,
Beila