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probable recurrence

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sisters,

just got my ca125 results today after 6 months, and it spiked from 21 to 112.. i had another ca 125 today just to double check, but my doctor thinks it's a true reading. next i'm having a ct/pet before the end of the year, then if the cancer has not spread too much, i'm opting for hormonal therapy. my doctor is willing to go this route with me, and will monitor me closely. if it's not working, then i have to make a decision re: chemo: whether to have it, what kind, etc. but one step at a time.

in a couple of weeks my partner and i are going for a week's retreat in bolinas california to commonweal, which is a cancer support institute that specializes in alternative treatments of cancer. they don't do any treatment there, they just give you the latest information, so i should know a lot more when i return. since i did not have assays done on my tumors, i was concerned re: this, but my doctor wasn't. she thought most upsc is receptive to progestin, but really there's hardly any data on it with upsc to know anything for sure. i thought i'd try this way first, then.......she's a chemo doc, so her preference is chemotherapy. she says there are new chemos out there, and like ovarian cancer, some women with upsc after chemo live another year or year and a half without treatment, as i just did. then there's more treatment. but she did up the survival time to up to 7 years. so, back to the proven crap shoot theory.

i do know there was some discussion earlier re: hormone therapy, but for some reason i can't access it. if anyone has any info on hormonal treatment of upsc, please let me know.

in the meantime, we're sad and disappointed, but not altogether surprised given the nature of this cancer. right now i'm feeling good physically, hoping i can have the hormone therapy, and hoping it works. we're actually doing ok at this point. i also intend to bring back to the group any new information relevant to us from commonweal.

on a brighter note, hope everyone has a happy, healthy thanksgiving.

sisterhood,
maggie

hopeful girl 1
Posts: 454
Joined: May 2010

Maggie,

I am so sorry to hear about your increased CA125 number.

I am hopeful that the California center will have some interesting information and alternatives.

Hang in there, and I am sending positive thoughts and hugs your way.

Cindy

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Dearest Maggie,
I am so sad to read your post and can only imagine the emotions you and your partner are experiencing! All of the soul searching, research, weighing the pro’s and con’s, etc...enough to make your head hurt!!

I am hoping that your trip to the retreat will give you time to gather more information and help make your decision easier.

Yes, this journey is indeed a crap shoot….but my friend, you are one heck of a poker player and I am confident you will have the winning hand!! We await your update and are anxious to hear what you learn at Commonweal.

Sending positive energy to you!

Big hugs to you, your partner and all of your family!
Karen

Always Hopeful
Posts: 234
Joined: May 2010

So sorry to hear about your suspected reoccurence. I am impressed with your attitude! I look forward to hearing about any info you can provide from your retreat.

As far as hormone therapy, someone just posted yesterday for the first time. She was diagnosed with UPSC 10 years ago...yup, 10 years ago. She stated that took Megase for almost 2 years and had whole abdominal radiation therapy (WART) without a reoccurance. Amazing, right? I looked up Megase and that is a hormone therapy (progestin). Her name was Piano ______. After I post this, I'll go back and copy her post after this one.

My best wishes for a happy thanksgiving with prayers for much health ahead.

Peace and hope, JJ

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

by chance do you have a way to contact pianogal on this site?
thanx again, maggie

Always Hopeful
Posts: 234
Joined: May 2010

Sorry, Maggie. The only posting she seems to have made is the one I cut and pasted. I do hope she will return soon.

Hoping your test today was really low and that the first one was an anomoly.

Peace and hope, JJ

Always Hopeful
Posts: 234
Joined: May 2010

This is the posting I referred to in my previous post, Maggie. PianoGal is my hero...10 year survivor with UPSC!!! YAHOO!

***************************************************88

November 21, 2010 - 9:22pm
Greetings from the wet side of Washington
I'm in Seattle where we freak out at the first snowflake, unlike you hardy Eastern/Central Washington folks.

What an outstanding group of women!

I'm new to the site, excited to find other survivors of UPSC. I was diagnosed in 2000, long enough ago that I don't remember the diagnosis details, other than that they found it in one lymph node as well as the uterus.

Total hysterectomy (including ovaries), Whole Abdominal Radiation Therapy (WART), Megace for 2-3 years.

Still cancer-free! The side effects of WART are increasingly kicking my hindside, though.

Kaleena's picture
Kaleena
Posts: 2024
Joined: Nov 2009

Maggie:

I am sorry to hear about your CA125 readings. It must be so discouraging. I pray that your CT/PET scan will come out good. Also, I hope your first reading was wrong and the second reading comes back with better results. Did your CA125 ever come in to play before?

I am unable to help you with regard to the hormone therapy. I was not able to take hormones after my surgery so I guess my cancer was related to hormones. You are soooo right about the crap shoot theory. Everyone and everything is different and no two really act alike.

Please let us know what you find out.

Wishing you a fantastic Thanksgiving.

in sisterhood,

Kathy

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Maggie
Sorry to hear you must deal with these concerns and right before Thanksgiving at that :-(
There is so much individual variability in how quickly things progress. In all, yours does not seem as aggressive as some who have posted here. Even mine has been a rather slow progression in recurrence as I opted to 'wait and see' after positive biopsy. Then got nervous and jumped into chemo back in January. CT/PET though returned to normal with treatment - of course life would have been better without the chemo. I've been reluctant to pursue hormone therapy as I felt it was possibly responsible for this cancer - I was treated with Tamoxifen and then Femara for breast cancer over 8 1/2 yrs then diagnosed with UPSC. It is certainly a strange beast with so many variables amongst us -- are these treatments the cause or the cure? Indeed it is a crap shoot. So, stay positive my friend, I think it is one of the best tools we have.
A Happy Thanksgiving to you and yours! You are here to enjoy it ;-)
Annie

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Sad to read your CA 125 had spiked. Positive attitude and a supportive partner are huge assets, Maggie. While I am very concerned for you I think you are going to be fine. There are many alternatives for treatment, both conventional and not. Your are a smart gal. Gathering information and wrapping yourself in a positive healing environment are wise choices. Thinking of you and sending the strongest of positive vibes.
sisterhood,
Norma

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

Oh, Maggie! I wanted you to be one of the lucky ones that walks away from their initial treatments and never has to look back!! I'm so so sorry that you have a rising CA125. It's just a number, though, kiddo, and although it may be a recurrence, it's not a confirmed recurrence. And you did get a nice long break from chemo that you made the very most of. IT still sucks big time. ((((Maggie)))))

I looked for the original post about hormone therapy, but could only find a post I made to Reddie about the research I did into Megace and tamoxifen back when my 2 oncologists were disgreeing about which would be best for me. It was a 2010 study & here's what I posted to Reddie on MEGACE (medroxyprogesterone acetate):

"Response rates as high as 37% have been reported in patients with PRpositive disease (measured by immunohistochemistry) compared with a response rate of 8% in women with PR-negative disease."

"Patients in the second trial were treated with continuous tamoxifen plus alternating weekly cycles of medroxyprogesterone acetate.[21] The response rate was 33%,with a median progression-free interval of 3 months. Although these response rates are higher than those reported for progestins alone, the progression-free intervals and overall survival rates are similar. A correlative study to this second trial explored the relationship between hormone receptor status and response to the combination of tamoxifen and megestrol. Interestingly, response rates were high even in patients with estrogen- and progesterone-negative tumors (a response rate of 26% for estrogen-negative tumors and 32% for progesterone-negative tumors).[22] The toxicities, which principally were weight gain and thromboembolic events, were tolerable with both regimens of tamoxifen plus progestin."

I put that quote into a Google search and got this URL that has more info:
http://www.medscape.com/viewarticle/586334_2

What I took from this research is that a combination of megace and tamoxifen is your best strategy, especially if you are unsure whether you are ER-/PR- and ER+/PR+. My chemo oncologist wanted me to wait to do hormone therapy when I have a NED CT/PET, to try and hold me there. My gyne-onc said if I ever get my cancer under control enough to have a NED CT/PET I should take a total treatment break.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Oh so sorry to hear of the rise in your CA125. Crazy to think one little number can have such a bearing on our outcome with this disease. And...we all know tests and scans aren't always accurate, as reason you're going for another one.

I wish you the best and know you'll pull thru this and continue onward. Love to hear what you find from your trip....remember, knowledge is power...so go get 'em!!!

Best to you!
Jan

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thank you all so much for being there and responding the way you have to my news. it means a lot to me. until now, i haven't been on this side of it--with the not such good news to share, and getting such a positive response. thank you especially jj and linda for the info on hormonal therapy. geeze, how i wish we could all be at commonweal together--to get to know each other personally, to be taken care of in the special way they do--which we deserve, to have partners be taken care of as well, and to get the newest info out there on traditional and alternative methods of treatment--tailor made for us individually. if only, if only.....

i'm with your doctor, linda, when you get your cancer under control enough, it would be great for you to have a total treatment break. it's weird, but this year without treatment made me almost feel free again--except for tests, worries re: every new pain and twinge, and just knowing the kind of cancer upsc is. still, it was wonderful, and for any of you that can swing it at some point if you're in treatment now, by all means seize the day.

i should get the results of my second ca 125 later today, but frankly don't expect it to be much different. but say it were low, i'd be glad about that, not entirely trusting, and at this point will still have the ct/pet when it can be scheduled before the end of the year.

thank you sisters, as you truly are.

love and sisterhood,
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am so sorry to hear about your spiking CA 125. As Linda said it is only a number. But still, I know your anxiety very well. Each time I hear "it's only a number", (but why does it keep going up?????). Hopefully your CT/PET will come back negative. Hope you enjoy the retreat to Commonweal and obtain some useful information.

So glad you are feeling good physically. I too hope you can do the hormone therapy and it works for you. Wishing you, your partner, and family a Blessed Thanksgiving. In peace and caring.

Cindy Bear
Posts: 570
Joined: Jul 2009

HI Maggie. Just wanted to say thinking of you and wishing for good things.. I am glad you are feeling well. Enjoy the retreat. It sounds wonderful.
Hugs,
Cindy

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

Maggie-
Just wanted to let you know I wish you the best outcome with the C125 retest and hope you glean lots of helpful information at the retreat. I, too, am in Northern California (Sacramento area) and have heard of Commonweal. For the life of me I can't remember what I've heard, tho.

Sending lots of positive thoughts and prayers your way.

Suzanne

Northwoodsgirl
Posts: 571
Joined: Oct 2009

Maggie,
You and your partner will make the right decision for you based on the information that you have. You are experiencing what we all fear. The cancer coming back or becoming detectable in our human bodies again. No words can bring you the peace of mind that having your CA125 back down to 21 would bring you...so I won't even try.
But do know that I, as many others on this journey are keeping you in our prayers. Although I don't know you personally you seem to be a strong woman and determined to beat this terrible disease.
God bless you (((HUGS)))
Lori

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

Hope things turn out well and you have wonderfully postive results with the hormone treatment.

Claudia

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thank you all for your good wishes my way. they count for alot. my partner and i are going to commonweal, a cancer support institute in bolinas california for a week's retreat__three gourmet veg meals a day, yoga daily, meditation, support groups, 3 massages, walks on the cliffs overlooking the ocean--sounds great. pricey, but great. they offer alot of education about alternative treatments to radiation and chemo, that is, they don't do them there, but give educational lectures so i'm eager to hear, since this is their area of expertise. we'll see. i'll be taking notes and will bring back to you anything of relevant note. my doctor, at my request, just prescribed megadoses of vit d for me, since i'm low and it should be extra high if you've had/have cancer. and there is evidence that it helps to protect from cancer. get your vit d level checked.! still waiting to hear when my ct/pet scan is scheduled.....
;;

thanx again,

sisterhood,
maggie

hopeful girl 1
Posts: 454
Joined: May 2010

Maggie,

Just wondering.....did you receive the results from the new CA125 test yet?

When do you leave for your retreat?

Cindy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

hi,
the second ca 125 i took my cold was worse, and the results were even a little higher. i decided not to do yet another one at this point, especially since i'm still getting over my cold and laryngiitis. i do now, i think, have a schedule for a ct/pet scan towards the middle of december, so will know alot more then. thanks for checking in.
sisterhood,
maggie

hopeful girl 1
Posts: 454
Joined: May 2010

Maggie,

Sorry to hear the second CA125 was higher, but that almost does seem as though the rise could possibly be caused by your cold/laryngitis.

I guess you will know more when the cold goes away, and you get your scan.
Hopefully this is just a little scare that will turn out to be ok.

Hugs and peace,

Cindy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

"from your lips to god's ear........"

sisterhood,
maggie

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