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Annie's UPSC status update

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

Hi All,
Had my gyn-onc appt this am for latest PET/CT results. Recap of where I'm at: Clean PET/CT and CA125 of 15 at end of last summer after 4 months on Gemzar; CA125 started to rise after I decided to take a chemo 'vacation'. Restarted Gemzar after 2 month break, by end of Nov ca125 14, end of Dec, ca 125 12! Today, PET/CT results all clear! Decision re continuing Gemzar as maintenance vs break and just monitor quarterly. Opted for the break again ;-)

Dr's comments of note:

He considers me as having "separated myself from the stats" as expectation is I would only live 16 months post recurrence (documented by abn. CT & ca 125 8/09 and confirmed biopsy 10/09. I am in good health, symptom-free, have racked up 35 miles on the road this month so far :-) and all lab work has returned to normal post last chemo 12/15/10. Is it because of general good health, focus on fitness, positive attitude, etc ? -- could be.

Regarding my concerns that I could experience rebound return of cancer if I just stop - are cancer cells so opportunistic as to rage ahead once chemo has stopped? He said we must assume I do have cancer cells still in my body. Once a recurrence has happened, it assumed it is never completely gone. And it seems, cancer cells grow/replicate faster when there are fewer of them because there is less competition for nutrients they need for growth. Larger tumors grow relatively slower because all cells within it are competing for same resources.

There is no actual documentation that bone marrow actually recovers from chemo treatments during a break but he does feel that it makes a difference not to keep bombarding it and the fewer treatments it must contend with the longer it will last.

That's it right off the top of head. Tonight - break out the champagne i saved from New Year's!!!
Annie

kansasgal's picture
kansasgal
Posts: 125
Joined: Aug 2009

What great news! Of course we all hope for such good news for everyone on this board! Glad you received some! And congratulations on the 35 miles, too!

Every time I see a post from you my mind just fills in "many bells down" and often I also think of "down they forgot as up they grew" and hope I will try instead to keep remembering instead of forgetting.

A big congratulatory and celebratory hug from Sally

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

I remember my gyne-onc saying to me "Why would you keep getting maintenance chemo when this NED scan could be the start of a multi-year remission?" And even though that wasn't the case for me, it certainly could be the case for you, for you have already broken out of the typical mold!!

CELEBRATE! ENJOY! (& you make me feel good that Gemzar will be my next chemo line if my bone marrow can't handle the carboplatin even in these weak fractionated doses!)

I am so very happy for you! LAUGH! DANCE! FEEL THE JOY!

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

@Sally,
You're the first person to recognize the source of my name! I fell in love with the line the first time I read the poem and although he is an American poet, it immediately took me back to the small towns I had visited with my son in western Spain with their central squares and the bell towers filled with storks' nests. I found it a wonderfully thought-provoking piece. And yes, it is so easy to forget so many important things!
Hugs back to you, Annie

@Linda,
I found Gemzar to be a fairly easy to tolerate chemo -- I did 8 cycles in 2010, after 2 of Doxil. So staying on it would not be as difficult as others - no hair loss, the usual chemo bowel issues, however I did get queasier on an ongoing basis as the months passed, as well as less energy and it was given weekly x3 on 4 wk cycles. Had some increasing liver enzymes which returned to normal after i stopped both times. And, i was only on a 2/3 dose trying to get the 3/mnth with bld. counts - only made it once in the 8 cycles and it still worked for me. Such a crap shoot!
Sending positive thoughts your way for success with carbo, Annie

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

You share a message of hope for me and others who have upsc. And what a way to defy the stats that the medical profession puts out there. I think you are amazing - and your positive attitude and relish for life and health is so inspirational.

Enjoy your vacation and may it last forever!! Mary Ann

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Annie,

I am happy for you. It is great to have some good news. Thanks for sharing it with us!
Enjoy the champagne!

Kathy

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

I love to share the positives in life! If it can work for me it can work for others as well!

Another comment Dr made in regard to fast/slow growth/progression of cancer which could be of value to the newer diagnosed: another time of increased activity is right after debulking surgery as the remaining cells that are to be treated by chemo/radiation jump at the opportunity for improved access to their needed nutrients. A defnite reason to get follow-up treatment underway asap.

Btw, I was Stage 4 @ diagnosis 12/07.
Annie

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Annie - I am so pleased for your good news. Thank you for sharing it with us - it gives us all hope and helps us stay positive that we can do it too!
Onwards and upwards!
Helen

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

Annie, I am soooo happy for you! Enjoy your chemo break. Dance, Laugh, Love!

Also, thanks for sharing your notes re: what you Dr. had to say. I always find their opinions very interesting.

Wishing you the very best....HUGS!! Karen

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

Annie,

That's such great news!! Nice to not have chemo for a bit...get out and kick up your heels and have an adult beverage.

Enjoy your down time...
(((( hugs ))))
Jan

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I love stories like this. I have no words of wisdom. Since I read the clinical study to develop a drug that takes folic acid out of your system (and they included us for a change) I would stay away from folic acid supplements.

Diane

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

Thanks All!

Diane, I had missed info on folic acid concerns and just read up on it. I'm so glad I generally avoid all wheat products as I am sensitive to them but used to consume regularly, except not usually white bread. Off to check all my labels!
Thank you for the heads up!
Annie

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

I just love good news. It seems that everywhere I turn lately, I hear bad news. I'm amazed how you have beaten the statistics both on your breast cancer and endometrial cancer. You are a wonderful inspiration to all of us.

Enjoy chemo break.

Suzanne

Always Hopeful
Posts: 234
Joined: May 2010

How great to hear your wonderful news, Annie. Hope you enjoyed every last drop of the champagne!

Peace and hope, JJ

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