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The Recurrance Forum

Hi, all.  I went today for my first 3 month checkup post-chemo and received the shock of my life. I'm at MD Anderson in Houston and my docs found a tumor at the top of my vagina about the size of a marble.  Pelvic exam shows it to be firm and hard which my doctor says makes her 99% sure it is cancer.  I have a biopsy tomorrow.  My history- I am 50 now & had early stage breast cancer 2004 with lumpectomy, radiation & Tamoxifen.  Stage IIIA, grade 3 OC in April 2006, cancer on ovaries, uterus and microscopic cells on omentum.  Genetic testing- negative. Surgery and 6 rounds of Taxol/ Carbo.  My CA 135 was 1445 before surgery, 32 after 1st chemo, 9 after 2nd chemo and <5 every session afterwards.  CT scans last Oct. showed NED and normal CA125 after chemo was completed.  My doctors thought I had sailed through the chemo with flying colors.  I have changed my diet to eat lots more fruits/ veggies, no sugar, take vitamins with extra C, D, & selenium, drink lots of green tea and eat tons of broccoli/ ginger.  Get plenty of exercise and was (still am) planning to return to work next week.  I am so disapointed- and shocked.  My CA-125 today was 8 and the only way this tumor was found now is because they made a mistake scheduling me again for CT scan (was only supposed to get bloodwork, per MD Anderson standard protocol.) YIKES!  Doctor is talking about Doxil and possibly radiation this time.  She says the side effects are not as severe, won't lose my hair and can/should return to work.  Looking for any insight from those of you with real life experience.  THANKS  Rachael
12 Responses
135691 tn?1271100723
Oh Rachael... I'm so very sorry. I'll never forget hearing my Dr telling me that my cancer was back - I was in shock to say the least. My CA125 never budged either - it was holding steady at 18 and had been for months. I'd had several scans showing NED and my gyne/onc actually didn't believe the results. Told me "I'd be shocked if this were cancer - it's probably scar tissue". In a month it grew over 2cm - definately not scar tissue! I recurred within six months of finishing chemo, so they deemed me platinum resistant. I go next week to find out what chemo they are switching me to - the taxol/carbo is not working very well (have had two rounds). Why are they not doing taxol/carbo again? Good luck with the doxil - it seems harder the second time around, mentally, for sure.
Stay strong,
Becky
167426 tn?1254089835
Rachael  I am so sorry this had to happen to you. Daughter started back to work this week, thought she could handle full days but she can't, cut herself back to half days.  Her CA125 was 5.6. We are both drinking the Medicine Man tea, we are keeping track of  of everything in a daily diary. We want to help however we can. Will tell her about this and insist she get Pelvic exams every 3 months.  I still do about 4 hours of research every day. Am getting so I can tell the scams from the really good stuff. The tea by the way has controled my diabetus. Will keep you in my prayers.
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can not offer any advice,just my prayers and good wishes for your biopsey.Dawn
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Rachael,
I know how scarry this would be.  Please keep the faith and hope.  We are all praying for a cure for you soon.
Feel well,
Unmai
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Thanks to all of you for your prayers.  I am off to my biopsy now.  Rachael
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I was at MD for about 18 months and they are the best at what they do. However, having said that my dr. released me and sent me home w/o any further treatment options and I came home to a gyn/onc that I hated but had options 18 months since I've been home I'm doing better than ever. Always explore options and get as many opinions as you possibly can don't worry if you **** off a dr. it's your life your saving! Good Luck to you!
Avatar universal
Maeg2617,

Can you tell us what options did you take?

I'm running out of options myself.
Avatar universal
Dear VFC:

Hello. What chemos have you used so far? Dr. Goodman has a list of varied possible options which can be found on the medical side of this forum. You can go to the archives and it will be there. I hope this helps.

Jatoo
Avatar universal
Thank you, Jatoo!

Here is a list of what I've taken so far:

1. Cisplatin + Taxol

2. Taxol alone

3. Caelix

4. Topotecan

5. Avastin (once every 2 wks) + Endoxan(cyclophosphamide) daily. Good results with this combination. Making my liver metastasis disappear. Unfortunately, tiny cancer cells (Avastin only works with tumors greater than 0.078 inch and Endoxan didn't make up for it) attached themselves to the outside of my intestines preventing them from moving easily to digest food. Hence the bowel obstruction.

6. Now, Gemcitabine + Carboplatin (once every 3wks/21days, only taken in combination) to try to deal with the bowel obstruction. Second cycle only 3 days ago. Slightly decreased of the CA125 from 148 to 140. Feeling better. Almost two months now since hospitalization.

7. In the case that doesn't work, what should I do?
Avatar universal
If you are platinum resistant, why are you on taxol/carbol again for recurrance?  Did I misunderstand?  Rachael
135691 tn?1271100723
No, I'd been seeing a gyne/onc at one hospital who put me back on it, even though I questioned him about being platinum resistant. He disagreed with me and I sought a second opinion at another hospital. Because I had already started my treatments, my new Dr said we'll do two, then stop to see where we're at. I've done my two and am going back to see this new Dr on Tuesday (who, by the way, said he'd put money on the fact that I'm platinum resistant!) So, in essence, I've put myself through 2 treatments of taxol/carbo for nothing! I feel really good about this new Dr and am anxious to see what he has to say on Tuesday. Good luck to you,
Becky
Avatar universal
Your experience with the Chemo's sounds similiar to mine. I honestly have put out a lot of my MD Experience from my brain, supression is a wonderful thing. Anyway, I have contacted my nurse to asker her about the cocktails I have done... b/c a couple were complete long shots that worked for time spans of 6 mo to a year. I will post once she gets me the information. I think one reason I don't know exactly which one was given when is b/c I have had most of them at least 2X with different combos, so I'm confused. Sorry.

The Hormone I'm on now is Megace and as I said seems to be doing the trick.
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