Stage IV cancer recurrence

[Sherryp]

I was NED from February to September although my CA125 was rising from 15 to 559. In December my PET scan came back showing that the cancer has returned. I will be starting Cisplatin and Gemzar along with the avastin that have been on. Is this just a waste time of time ? Do I really have a chance ? Has anyone Ben on these drugs? Is it as bad as taxol and carboplasin? Is there a chance for survival?

[DSK-C SHARE Volunteer]

I am so sorry to hear of your recurrence. I have met women who were diagnosed at Stage IV and have been on many chemo protocols. They are 5+ year survivors and hoping for many more years. New therapies and drugs continue to be developed.

I was on taxol and cisplatin. Cisplatin is usually given via an intraperitoneal port. It is related to carboplatin. It is a tough drug. You need to drink a lot of water when you are on it. See whether you can get armed for nausea. You can also try acupuncture for nausea. Or wear wrist bands for nausea.

Good luck!

[Belsie]

Sheryl I have been on them all. What does NED mean. Oh I have not been on Cysplatin. I took Carboplatin and Taxol together. That was the hardest drugs of them all. Had Gemzar for a year. Not too bad. Had Avastin but had to get off of it ran blood pressure up too high.

[missa13 in reply to Belsie]

Belsie , NED means "no evidence of disease."

[AndreafromSHARE]

Hi Sherry:

Unfortunately, ovarian cancer remains a very challenging disease because it is so often diagnosed at later stages and — while frontline chemotherapy is effective for many patients, ovarian cancer recurs at rates we all hope will decrease as newer/better treatments are discovered or more effective combinations of therapies are found.

Sounds like your doctors are recommending Cisplatin, Gemzar and Avastin for reasons well established by evidence-based medicine: the length of your remission indicates platinum-based chemotherapy is effective against your ovarian cancer; generally, several agents may be more effective than a single agent and Avastin is an anti-angiogenesis therapy designed to “starve” tumors by stopping a vascular system that would feed them. At this point, I just want to remind you that I am making these observations as a long-term, late-stage ovarian cancer survivor and not as an experienced gynecologic oncologist nor an ovarian cancer researcher. It’s important to remember who is responding to your post here.

There are women, some of whom volunteer as peers on SHARE’s Ovarian Helpline, who have been on this regimen for recurrent ovarian/fallopian tube or primary peritoneal cancer and have benefited from it — some going into remission or having stable (progression-free) disease giving them time to enjoy their life.

Studies are showing that ovarian cancer survivors are living longer with better quality of life than in past decades. Ovarian cancer has been revealed to be heterogeneous — very different at the molecular level. And we are all different as patients — my way of saying — you never know what will work for whom and for how long. Thus, my short answer to your question as a layperson is “Yes, you really have a chance.”

In 1996, when I was diagnosed with Stage IIIc high-grade serous ovarian cancer, I might not have responded to your post the same way. But it’s 2016 and science has and continues to evolve and show us what may work better.

All therapies have side effects and those side effects differ from patient to patient so it is hard to answer when you ask if one regimen is “as bad” as another. But if you want to speak with a woman who has been on the drugs you will be taking, we encourage you to call our helpline. 866-537-4273

Best,

Andrea

SHARE Ovarian Helpline coordinator

[Dollysmum in reply to AndreafromSHARE]

Andrea would you mind if i copied your post and shared with the Ovacome ladies? it's very positve and what we all need to hear.

Cheers

Debs

[AndreafromSHARE in reply to Dollysmum]

Hi Debs:

Absolutely. Please do.

Best,

Andrea

[DocIt in reply to AndreafromSHARE]

How are you doing today Andrea?

[Biscuitqueen in reply to AndreafromSHARE]

Hello Andrea, your story is so encouraging! Is there anything you did especially like change your diet etc?

Thanks very much

[AndreafromSHARE in reply to Biscuitqueen]

Hi Biscuitqueen:

Sorry for the delayed response.

No real changes in diet: I just follow the general advice about lots of fruits and vegetables. We like to cook in my household and enjoy eating pretty much everything, mostly fish /chicken dishes and we try to limit red meat dinners to one per week.

More of a change with exercise but that has less to do with ovarian cancer and more with having the luxury of more time that comes with semi-retirement. I belong to a gym where classes are part of the membership and I alternate daily between total body conditioning and zumba. I have the discipline to show up and it has made a big difference in how I feel.

Best,

Andrea

[Biscuitqueen in reply to AndreafromSHARE]

Thank you for your advice! Exercise really is a winner!

[Sherryp in reply to AndreafromSHARE]

Thank you!

[Ruthyc]

I was on gemzar and cisplatin.am now in remission since October 2015. I wish you the best!

[Sherryp in reply to Ruthyc]

Thank you and I'm so happy for you 😊

[Rosehoward123]

Me too ! Diagnosed with reoccurrence (after 9 months Ned) in December . I'm on carboplatin and doxil for 6 cycles. I have the same thoughts -is it worth the effort? Why just prolong the inevitable? But you know, I feel terrific, and without the ct scan, would not know the cancer is back. I wish you the best!

[Sherryp in reply to Rosehoward123]

Thank you, for your comment. I also would not have thought much about the cancer if it wasn't for my PET scan. I only have received one treatment so far because of low WBC . I am scheduled for second treatment January 10. Hope I can get on with it! The sooner the better!