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Guess who's on a CHEMO BREAK!! me! me! ME!

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

I just got back from my appointment with my gynecologic-oncologist, and he is recommending that I take a break from chemo now!! MY CA-125 dropped from 47.2 3 weeks ago to 42.5 from my labs taken Thursday. Although that is not within the normal CA-125 range of <35 range, or anywhere close to my lowest CA-125 of 11 following my initial carbo-taxol protocol, my gyn-onc seems to think that "mid-40's range' may be my new 'normal' range. He said "How can we know what your CA-125 was before you ever got cancer? It could very well have been in the mid 40's. And with the on-going inflammation that you are experiencing from your prior radiation, your CA-125 may stay at that slightly elevated range, and still not indicate cancer activity."

He said that my chemo-onc was recommending that I do 6 rounds of carbo-taxol again if my CA-125 went up, and that there is really no right or wrong decision to make now. He said this is when cancer treatment is more an art than a science. He gave me the BIG internal exam (where he goes up the rectum way uo to where my overies used to be!) and could feel NOTHING wrong. With the clear CT/PET I just had, he said he could see no reason to subject me to additional chemo at this time!!! So my oncologists appear to disagree, but my gyn-onc is the specialist in UPSC, and the head of Women's Health at the hospital, and I am sure his recommendation will be taken. I'm on a treatment BREAK!! The gyn-onc wanted me to come in in 2 months for a monitoring CA-125, but I requested that they do it in 6 weeks, just in case it shoots up again and we need to change our minds.

Interesting and hopeful statements to share with the rest of my UPSC sisters and those in recurrence: He said that he won't be surprised if I am already in remission, and that it could very well be a prolonged one. He has seen women go into remission and stay there for years. He said that my immune system may bring my CA-125 down on its own. He said that if my CA-125 stays the same (in the mid-40's range) without chemo when I have labs drawn in 6 weeks, he will be fairly confident that the mid-40's is now my 'new normal' CA-125 range. He doesn't use the word 'cure' for recurring UPSC, but he did say that there is no reason that I couldn't be in a multi-year remission that stretches on and on. I promised him that I would use the break to get strong again and in top shape so that when I need to go on carbo-taxol much much later, I will again be battle-ready.

So, I will join the ladies growing HAIR again!! woo woo!!

wonderingalice
Posts: 49
Joined: Feb 2010

Linda, that is wonderful news. Enjoy your break!

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

So happy for you! Such talk of remission is indeed cause for celebration.

My second Doxil infusion for my first recurrence has been postponed due to low WBC / neutrophils but hopefully this week will be a go.

My gyn-onc had not been monitoring my ca125 because he is not convinced it is really relevant with UPSC. I told him it was monitored by chemo-onc and gyn-onc for first treatment and then was cause for CT/PET scans with recurrence. It then returned to normal without treatment and my nodes resolved as well when I was changed to this gyn-onc. Then I had elevated ca125 again and CT/PET scans showed new nodes. This time biopsy confirmed recurrence.

CA125 last week was 256 :-( but I don't have anything to compare to since Aug '09 when it was 225. It had dropped to 22 in May '09 from 220 in Jan '09. What a roller coaster ride! So is ca125 significant or not - big question mark. It was 9 at end of first carbo/taxol course ended in 6/08.

It is wonderful to hear your onc's insights, considerations, etc. It provides fodor to question my onc's treatment plans, etc. So wonderful to have this forum to share and learn.

Enjoy your hair regrowth!!!
Annette

maggie_w
Posts: 18
Joined: Jul 2009

linda,

such great news, for you especially, but for the rest of us as well. that there's life and hope after recurrence. what your doctor said about what might be your "new normal" ca 125 matches what i've heard as well, i.e., that it cqn be higher than what is considered normal, but normal for us. also, it was thrilling to read you could be in long remission--from your lips to god's ear!

i was also glad to read that this second chemo round was not rough on you, and that you got through it fairly well. certainly, not having to go through a more rigorous chemo now, is wonderful news. it's been over 3 months since my last chemo, and i now have a nice pelt of hair, so no more knit hats, as cute as they were.

linda, in what city do you live? it's always of interest to know what differences in treatment perspectives there may be on the west coast (me) compared to the mid west and east coast.

my partner and i took a 17 night vacation on kauai two weeks after my last chemo, and that vacation was the best ever, even though it was actually chilly there. we didn't care, we were just so happy to be in hawaii, alive and well, sitting on the beach (bundled up as we were), and watching the ocean. also, did a lot of walking on the beach barefoot, which my acupuncturist said is good for neuropathy in the feet.

so, i know how much fun it is to plan a vacation, and i hope this next vacation is all you would want it to be--restful, fun, relaxing, nourishing, health producing, etc.

warmly,
maggie

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

I am so happy you are going to get a break from chemo. I pray that you have a very long remission. That would be wonderful. I hope you CA 125 continues to drop, or stabilize where it is. Enjoy your break. Your wig looks so good, but I know you will want your own hair back again. In peace and caring.

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

Glad to hear that your visit with your oncologist went so well and his optimism is refreshing! Keep dancing, enjoy your "break" !

Karen

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Congratulations on the chemo break! I am so happy to hear such good news from you.
It is interesting that the CA-125 can have a new normal but it makes sense with all the stuff we have been through. I also am in the hair growing club...and now 2 months after my last chemo can see and feel a difference in my hair. Linda, again prayers have been answered! Congrats!!!!
Lori

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

Great News!! I don't have UPSC but, and heartened by your information nonetheless. Thanks for sharing your journey. I just finished my last carbo/taxol scheduled for a CAT Mar 22. Keeping my fingers crossed for a good result. Your posts give me courage and hope. Thanks.

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

I am so happy for you! You did it kid! Enjoy every minute. I am proud of you and what you have dealt with.

I will be going back on chemo soon. scheduled for biopsy of the peritoneum but apparently these are hard to get. And I have a new power port. It really doesn't bother me and that surprises my husband so much.

I am happy for your remission. And thankful.

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

Norma,

I have an appt for a consult at MD Anderson. Isn't that where you went? When you read all of these blogs one can't but wish for more research on serous uterine cancer. Right now I am so tired of appts, tests, and sticks that I'm having a hard time getting the motivation to fly to Texas (I live in Virginia). So I guess I'll dust off my boots, wait a minute with neuropathy I'll just bring my comfy shoes that I found that are so great for neuropathy.

Love Your posts! Please don't get discouraged with my recurrance. I may have been platinum resistant.

Diane

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Great news!!

Enjoy the break, you deserve it!!

Laurie

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