Stable Disease/Remission

• By Jennali
• Posted June 25, 2009 at 9:46 pm
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Remission would mean no evidence of disease. But stable isn't that bad for OvCa, even though of course we would rather have NED. Many doctors now treat OvCa as a chronic condition. Not a perfect solution, but I'll take it until something better comes along.

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• By PLE
• Posted June 25, 2009 at 9:56 pm
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Jenali,

Thanks for your reply. My doctor said patients did not have stable disease until Avastin came along. We will pray for researchers to find something new for us soon.

Hugs and smiles to all!

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• By sbender3
• Posted June 26, 2009 at 7:21 am
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i was diagnosed july 2006, and had 6 months of "remission" following my chemo that ended 11-06. i have been on chemo since. but even though i have been on chemo, i was stable for about 6 months last year, and i am stable again. i have no evidence of disease, except the fluid. the carbo is working on that again. so when they say stable, be happy. that is a good thing. god bless, sherry (my ca125is down to 82, but over the past 2 years it hung around from 55 to as high as 900, back to 42 up to 138, back down to 82)

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• By tg4love
• Posted June 26, 2009 at 8:12 am
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I too have been on Avastin plus Taxotere, after 6 months of weekly chemo my CT came back that the cancer had not changed. Not worse, but not gone either. Stable. My doctor stopped my chemo because of this and because the side effects from the Taxotere have been horrible. So far the doctor hasn't told me the next step yet, which is driving me crazy. It's been two weeks since my last chemo and I don't want the cancer to start growing. I have asked about using the Avastin alone to at least keep it STABLE, I was told "if" that is what I wanted to do, that would be okay. I'm hoping that Avastin IS the miracle drug until something else comes along. Let's keep posting how Avastin is doing so it can help others. My CA125 has doubled but still in the range, but this has, in the past, been a yard stick that something is going on, that scares me too.

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• By Jen457
• Posted June 26, 2009 at 9:36 am
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I started Avastin and Gemzar in January with a bad cat scan. In April, the cat scan was great. Unfortunately, my tumor markers started rising--latest one was 51. I had another cat scan and am now on Avastin and taxol. They found a small mass in my abdominal fat that wasn't there before. The Avastin did work for me for a while or was it the gemzar? :)

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• By desertlover
• Posted June 26, 2009 at 10:43 am
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It took some time for it to show positive signs but single agent Avastin is working for me. My last CT scan four months ago showed that the tumors had stablized, decreased or disappeared. My CA 125 kept creeping up until 12 weeks ago when it began to drop over 20 points every four weeks. So I have gone from top of 99 to 34. I started in September 2008, so patience is the key for me.

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• By PLE
• Posted June 26, 2009 at 12:33 pm
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Thank you all for the replies. It seems that Avastin is the miracle drug for now! My clinical trial nurse talked about giving me 8 chemo sessions instead of 6. I had my 4th one yesterday and have felt amazing with little side effects with this first recurrence and chemo I actually feel better than I have in two years. I did read on Johns Hopkins website that with recurrent chemo it takes up to 2-4 to see a change in tumor etc. That was reassuring to me.

You all are so special...keep smiling.

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• By Shearaw
• Posted June 26, 2009 at 11:19 pm
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Hang in there girls! When I had cabo/taxol/avastin for front line treatment, the CA-125 decreases led the tumor decreases. At the end of 7 cycles there were still measurable nodes, but my oncologist believed they were necrotic (i.e., dead) tissues. I continued on avastin only for a year, and the tumor/nodes shrank back to normal size.

Best of luck on the program!

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• By PLE
• Posted June 27, 2009 at 9:34 am
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Shearaw,

Way to go! We sure need to hear success stories...YAY!

I had my 4th chemo for my first recurrence and feel absolutely great with such minimal side effects that I start wondering if I am getting the real stuff...I feel so blessed.

Smiles to everyone.

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• By glann
• Posted July 1, 2009 at 6:19 pm
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Hi

I have joined this site from the UK as my neice who is 49 was dx with Stage 4 ovarian just recently. We are all in shock for her. She went straight onto Chemo with a 3 week break in between. She is coping well, but was not prepared for the pain. She has been told it is inoperable and they will hopefully achieve remission for her. We all feel so helpless that we cannot help her feel better. She is amazing in herself and is so positive. This site is full of amazing positive people undergoing treatment for a horrific disease. It gives me hope for her when I read what others are going through. Prayers for all.

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• By Jennali
• Posted July 1, 2009 at 10:05 pm
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Yes, getting a diagnosis of ovarian cancer is definitely a shock. I am so sorry that your niece was delivered this bombshell. I hope the chemo will work some magic for her. Do you know what she is being given?

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• By Patricia123
• Posted July 2, 2009 at 7:13 am
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I wonder about Avastin as maintenance after initial treatment. I am on maintenance Taxol being NED after initial treatment with carbo taxol.

Stable disease looks good to me. ANd Parps are right around the corner for non BRCA people. A phase II trial of such patients in opening soon.

I think that to get a remission or stable is giving us good time,,,a better avastin, a parp, a vaccine gives me cheer.

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• By leshapiro
• Posted July 2, 2009 at 8:17 am
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tglove,
As I wrote to Geri, I've been on Avastin since June 1, 2007 with no break. My doctor believed it was keeping me in remission and didn't want "to rock the boat". My latest CT showed two small spots but we're not sure they are disease. I never expected to hear the word remission and was also told it's a chronic disease and if you can keep it stable, you're good. I'm hoping that's the case now. If it doesn't get worse, I'm good to go. I am also BRCA1 positive so the PARP inhibitors are of great interest to me. Hopefully, I won't need them but it's good to know they're out there. My doctor also reminds me that there are new things all the time. My bigger concern right now is my daughter. I have 3, two of whom got the gene mutation and 1 has breast cancer. She had chemo first because it was so large and her surgery is scheduled for July 23rd. The other one is going to have a prophylactic mastectomy in the fall. They're twins (fraternal) and are 33 so my disease has taken a back seat but when I heard about the PARP inhibitors I also thought that God forbid if my daughter does need them, there is something else for her as well. Blessings to all of us fighting both of these horrible diseases.

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• By tg4love
• Posted July 2, 2009 at 8:45 am
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I read every day things put on this web site and I get so many different emotions. I'm grateful for everyone sharing their feeling and thoughts. I hesitate at times putting mine on here for fear my doctor or her staff will read them. But today I want to share my heart with you all.
Three weeks have gone by now without any word from my doctor as to the next step. I saw my doctor and had my ct which came back and the doctor said the chemo has stopped working but my cancer is stable. I haven't been told to do anything, get ANY chemo and I'm just sitting here in limbo. The doctor has been on vacation and the staff was gone for days, I wish I could have a vacation, but my cancer doesn't go on vacation. I am living with cancer inside of me, maybe growing or not, it's still there and with my family history, I'm not thrilled waiting. I am afraid to call the doctor's office because I don't want to become a "difficult" patient. How long is long enough to wait? Here it is another holiday week, they won't work on Fri. Didn't come in on Mon. either. Still haven't heard a thing.......

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• By Jennali
• Posted July 2, 2009 at 11:01 am
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I think if you are courteous in your phone call that you will not be labeled a difficult patient. Not that that would be an excuse for the office ignoring you...Perhaps your case has just fallen through the cracks. Again, not that it should have...

I would urge you to call next week expressing your concerns.

Good luck.

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• By Shamrock2009
• Posted July 2, 2009 at 12:26 pm
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Hi Patricia123,
They are studying Avastin to see if it is a good maintenance drug. The double blinded GOG 0218 study ---Part one: randomization--Taxol, Carbo cycles 1 -6 + Avastin/Placebo cycles for 2-6 with a 2 in 3 chance for participants to receive Avastin arm,
Second part of study: randomization to 16 cycles of Avastin/Placebo ( those receiving Avastin in part one of study have a 50% chance to receive the additional Avastin). The results of this study will show if Avastin given first line along with the standard drugs is advantageous and if additional Avastin maintenance is of value. I believe the study accrual will be complete in a few months.

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• By Patricia123
• Posted July 2, 2009 at 2:33 pm
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Thanks!

I am counting on Avastin in the future as well as Doxil and the divine parps. Vaccine trials too,,mimosa looks interesting.

It drives my doc crazy , he want s to wait till whatever happens and thinks I am needlessly worried,,everything looks good so far. But I know that the best way not to be anxious for me is to know things and to anticipate the next step if it comes.

But I am trying to let the worry go. Or confine it to certain hours.

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• By JanP
• Posted July 2, 2009 at 2:54 pm
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Hi Glenn
You may also like to join the UK based site called Cancer Buddies Network. It is just a bit more relevant to the treatment options available in UK and also uses the UK drug names.

Go and join =free of course- and if you want to chat to me for help in negotiating it then contact me on the name JanPurple. I actually find it much easier than this to find my way around.

It is for anyone involved with any aspect of cancer but there are a lot of active Ovarian cancer members who you can meet.

Looking forward to meeting you there.
JanP

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• By Shearaw
• Posted July 2, 2009 at 7:50 pm
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tg4love, Definitely call the office and ask to speak with either the doctor, or the nurse or physician assistant, if there is one. It is remotely possibly that your doctor thinks you are in watch-and-wait status. But, if you need clarification, you are more than entitled to it. Are you located in an area where you can consider getting a second opinion?

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• By glann
• Posted July 18, 2009 at 3:14 pm
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Hi

Txs for post. Not sure of the mix of chemo she is having, but her CA125 has gone down to 49 from 295, she is pleased with this. Also, she was due chemo on Friday and the oncologist wants to reduce it so he has to wait for the consultant visit on Monday. Family are assuming this might be a good sign for her. She has stage 4 and grade 4 and last year had a pain in her back on holiday with cystistis. The doc who treated here told her to go and see her own GP when she got back and when she did he sent her for physio for her back, until the pain got worse and then she had all the scans and it was then found. She is planning a trip to New Zealand once she is in remission. Told you all she is amazing just like you lot. Keep well all of you.

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