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1st of 2 oncologist opinions on what to do with clear PET & rising CA-125 after 1st recurrance

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

I could hardly wait to get back and post the fascinating appointment I just had with my chemo oncologist. My talk with my chemo-onc was as exciting and confusing as the surprise clear CT/PET scan results I got last week. But I left my appointment with new hope and am anxious to share that hope with the rest of you.

(Just a quick history for anyone new here: I started carbo/taxol for UPSC Stage 3-C in November 2008 after uptimal debulking surgery in October, 2008; and finished 6 rounds of carbo/taxol and 28 rounds of external IMRT pelvic radiation and 3 brachys on July 1, 2009, finishing with a NED CT-scan and a CA-125 of 11. I enjoyed 5 blissful months of remission, but in November 2009,on a routine monitoring appointment, my CA-125 jumped to 155. That triggered a CT-scan and a PET scan that lit up 3 lymph nodes. I started weekly taxol at 1/3 strength December 10, 2009. The weekly taxol was slowly bringing my CA-125 down again, but two weeks ago my CA-125 climbed from 45 to 47. So after 10 rounds of taxol I had a 'mid-point' CT/PET scan last week. We were all SHOCKED when NOTHING lit up on the PET, and 2 of the enlarged lymoh nodes were invisible, and the other had shrunk to 11mm and showed no 'uptake' on the PET.)

Soooo, my chemo-onc discussed my options now.
1.) I could take a break from chemo and just be closely monitored. I had a CA-125 drawn today that we don't yet have the results of, but if it goes up again, my chemo-onc felt we would all be uncomfortable with just monitoring. Of course, if the CA-125 taken today drops me under 35, then a break may make the most sense.
2.) I asked if I could just do ONE round of full-strength carbo/taxol, because I think that would drop my CA-125 under 35. The chemo-onc said he wouldn't do that, because even if it dropped after 1 infusion, it would go back up again. Instead he said, "if our goal is to still go for a CURE, let's consider going 'balls-to-the-wall' again and do 4 to 6 rounds of full strength carbo/taxol and try and knock this beast completely out of you." (!!!! He used the word 'CURE'!!! even after a recurrence from UPSC!! I was flabergasted!!) I was so shocked, as it contradicts what he said when I started chemo the first time right after my surgery. At that time he said "If you cancer comes back, we will stop talking 'CURE' and talk instaed about 'managing your condition'." So I asked him outright if he really thought I still had a shot at a cure or even a prolonged multi-year remission. And he said, I wouldn't suggest putting you through this again if I didn't. WOW. Take that in, ladies. Even after a recurrence, my oncologist thinks he might still cure me. HOPE springs anew. Of course, I am getting a 2nd opinion on Monday on all this, and both oncologists will have to agree that this hope is valid before I go into this aggressive chemo again.
3.) We talked about 'maintenance' chemo. My chemo-onc has said this before and repeated it again, maintenance chemo has been proven to not extend life. He doesn't ever continue chemo in even weak doses for people in remission. So my idea of getting a weak dose of taxol once a month was nixed.
4.) I brought up tissue assays. The chemo-onc said that the science just isn't advanced enough yet for uterine or ovarian cancers that would make a tissue assay worthwhile. Unlike cancers of the breast and colon, the assys for us won't show what chemo drugs will work, although they sometimes show what will NOT work. (STILL valuable knowledge, I think!)

I think that was most of the new information I have to share. If I think of something more I'll post it later. I have no idea what my treatment wwill be like until I get my new CA-125 and until I see my gyn-onc on Monday for his input. But I am curious to hear what the rest of you with recurrence think about taking a second aggressive run in the hopes of still achieving a cure. HECK! If it even has the chance to shoot me into a 2 or 3 year remission, it would be worth the gamble to me. But I want to hear what you all think. Thanks!

thank you
Posts: 77
Joined: Jun 2009

What a nice word!!! CURE...
And how wonderful news.
Now we just want a Ca 125<35 .
I think good news are coming together - I have the feeling your next week's post will be:
Ladies, I have a normal Ca 125.
I will pray for thant
Chrysoula

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Linda I am so happy for what the doc said to you, but I am so confused. I have Uterine cancer with mets to the lung. My doc say's there is no cure with anyone with recurrence, so I got the news yesterday that I will be on Doxil for the rest of my time. I have found out that I have 8 nodules that are not growing and some have gotten smaller, no progression anywhere else showing with a ct scan. I asked how long does one stay on this Doxil and the answer was that one of the patient's has been taking it for 2 years. He said I could take a break whenever I want and that I was in charge of my chemo now. How can one doc say "cure" when another says "no cure". He also said that when I stop taking the chemo the cancer will grow back, so why would I stop taking it. Only reason why would be side effects and quality of life stuff. Talk about a roller coaster ride on your part, do you think that the PET scan was wrong the first time? I am glad you are getting a second opinion and I hope you come out with some really good information, you must be so confused.

Hugs to you from me,
Sharon

Ro10's picture
Ro10
Posts: 1454
Joined: Jan 2009

How are you doing on your Doxil. Are the sores any better? I hope they are. They sounded so uncomfortable. How often are you getting the Doxil? Are you taking other other drugs with it? Has it been any harder on you than the Taxol/Carbo was? I continue to pray for you. Hope you are doing well. In peace and caring.

Ro10's picture
Ro10
Posts: 1454
Joined: Jan 2009

I am so happy you have new hope. A CURE would be wonderful. I wonder if you can tolerate the full strength chemo now. How have you lab reports been. I know you have been getting Neupogen each week. Have your other labs been okay. To get rid of the "beast" totally would be wonderful. If your body can take it, I would think it is worth taking it.

What a difference in opinions with onocologists. To talk "CURE" is wonderful. Hope you are doing some more celebrating. Hope you second onocologist agrees with the first one. In peace and caring.

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

I've been thinking about the doctor's "cure" statement. At 1st I thought it was important to my treatment decision to know if there really IS a chance of a cure. But, really, if the weak-dose weekly taxol isn't dropping my CA-125, I either have to switch to Doxil or do the carbo-taxol like initially ANYWAY, whether I'm going for a cure or just trying to stay alive. So I may as well have hope, since I think I have to do a harsher chemo regardless, if my CA-125 goes up. Maybe that's my oncologist's rationale, too. Keep her hoping so she keeps showing up for her chemo, and eating right, and trying to get well. And maybe because it's still just in my lymph system and not in any of my organs yet, there is a slim (slim!) chance. May as well go for it.

My platelets and RBC that I had such trouble with during my initial chemo protocol, have been marginally okay this second time around with this fractionated weekly taxol dose. I may even be able to get my carbo/taxol fractionated/weekly this time; my oncologist threw that idea out there back when it was just hypothetical thinking-out-loud. I would probably get nuelasta shots this time around. I last had carboplatin infusion March 26, 2009 so it's been almost a year and I shouldn't be platin-resistant.

((((((Big hugs to Sharon, Fran & Ro & Diane and the rest of my recurrence sisters)))))).

deanna14
Posts: 734
Joined: Oct 2008

I think that if your doctor believes in going for a cure... you should go for it! As long as your body can continue to rebound from the chemo and you can live with side effects. I certainly would appreciate your doctors positive outlook!
Good luck on Monday and please let us know what the second doctor has to say.
Love and hugs!!

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

Thanks for sharing your treatment for recurrance. I am just finishing my initial treatment. March 22 is when I go in for a CAT scan of chest/abdomen/pelvis. My CA 125 was 471 when diagnosed and has been respectively 23, 23, 13, 11, 10 each 3 week test. It is scary that they may find something after all this treatment since October surgery, radiation and cisplatin Nov-Dec and 3 Taxol/Carbol one every 3 weeks, last one was Feb 22. I guess we are never without the fear of recurrance in the back of our minds. Your sharing about your recurrance gives me hope that even if it does occur there is something that can be done. {{{Linda}}}

maggie_w
Posts: 18
Joined: Jul 2009

linda,

while i'm ned only 3 months, and haven't had recurrence, i hope it's ok that i ask some questions. of course, it's incredibly exciting and hopeful to think that we could have a cure/long remission after a recurrence, so i do want to hold on to that. still, i would want to know on what your doctor is basing his opinion that a cure/long remission is still possible after a recurrence. his experience in his own practice? other doctors' anecdotal reports? statistics? new research? did he say? i also wonder what made him change his mind from what he originally said re: managing your condition, to talking again about a cure?

in any case, i sure hope your latest ca 125 is low, low, low, and will be waiting eagerly to hear what the second opinion doctor has to say.

thanx again, linda, for sharing what's going on with you. you really are a treasure.

warmly,
maggie

culka's picture
culka
Posts: 158
Joined: Oct 2009

I forgot that I am watching hockey. Us against us (Canada vs. Slovakia). This is the best news ever. Good.

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

Hi Linda,

Sending you positive thoughts and prayers for your appointment today! Looking forward to hearing how it goes- praying for a normal range CA125!!!

Kind Regards,

Amanda

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