Recurrent ovarian cancer survival rate

Nicm

Hi,

My mom had stage 3C ovarian cancer 5 years ago. We found out today her cancer is back. I am just wondering some things:

1. What are the survival rates for recurrent ovarian cancer?

2. Is it staged again, or is it always going to be stage 3c, since that is the stage they caught it at?

3. Are there immunotherapy drugs or other drugs that are FDA approved for ovarian cancer?

God bless you all. I've been reading your posts and am praying for all of you! Thank you for sharing your stories on this forum.

Tethys41

Hi Nicm,

Sorry to hear your mom is having a recurrence.  I believe the stage can be changed if her recurrence is inside her liver or in her lungs, in which case it could be stage IV.  It is actually a very good sign that she had a 5 year remission.  Do you know whether she is BRCA positive?  She may be, with such a long remission.  The University of New Mexico is treating BRCA positive women, who are having a recurrance, with a combination of PARP inhibitors and immunotherapy and they are having excellent results, even in women who have run out of options.  This treatment is available at other facilities across the country.  If she has not been testesd, she may want to do the test to see if this is an option.  I have recently seen advertisements for an affordable saliva test to determine her BRCA status, but her doctor should be able to order the conventional blood test and insurance should cover it.  I don't know whether the saliva test is as accurate as the blood test.  Do you know whether her doctor is going to treat this like a new case, with a debulking surgery and carboplatin and taxol?  If not, you may want to have a second opinion. 

Let us know what you find out.  Good luck.

Nicm

Tethys41 said:

Hi Nicm,

Sorry to hear your mom is having a recurrence.  I believe the stage can be changed if her recurrence is inside her liver or in her lungs, in which case it could be stage IV.  It is actually a very good sign that she had a 5 year remission.  Do you know whether she is BRCA positive?  She may be, with such a long remission.  The University of New Mexico is treating BRCA positive women, who are having a recurrance, with a combination of PARP inhibitors and immunotherapy and they are having excellent results, even in women who have run out of options.  This treatment is available at other facilities across the country.  If she has not been testesd, she may want to do the test to see if this is an option.  I have recently seen advertisements for an affordable saliva test to determine her BRCA status, but her doctor should be able to order the conventional blood test and insurance should cover it.  I don't know whether the saliva test is as accurate as the blood test.  Do you know whether her doctor is going to treat this like a new case, with a debulking surgery and carboplatin and taxol?  If not, you may want to have a second opinion. 

Let us know what you find out.  Good luck.

Hi Tethys41. Thank you for

Hi Tethys41. Thank you for responding! She has gotten the blood test done and is not BRCA positive, but she has Lynch syndrome (which is a genetic mutation found in various genes that gives her a higher than average probability of developing ovarian and colon cancer among others). Her doctor has ordered a PET scan, which she will have done on Tuesday. At that point he will decide whether he wants to do a surgery and then chemo, or chemo (and surgery afterwards?). Do you know if this treatment of PARP inhibitors combined with immunotherapy is available for people with lynch syndrome? Do you think that debulking surgery and carboplatin and taxol are a good way to go? I've been reading these forums and have read about avastin and other drugs, but the side effects people on these forums describe sound awful. I'm being very judicious about what information I share with her so I really want to have as much information as possible before I suggest she talk to her doctor about various drugs..thank you for responding and I would love your opinion on the questions I've mentioned above! Thanks again!

Tethys41

Avastin

Hi again,

It sounds as if her doctor will be handling your mom's recurrance as if it is a first diagnosis.  Debulking and chemo,or chemo and debulking, has a high success rate.  If she has a lot of tumors, the doctor may opt to do chemo first so that her surgery is more effective.  It sounds as if she is on a good path. 

Unfortunately, the PARP/Immunotherapy trial is only for BRCA positive women.  I don't know if they have tested it on patients without that mutation, but if they have, it does not seem they are pursuing it.  You might want to go to the clinical trials website to see if there are any trials for people with Lynch syndrome.  clinicaltrials.gov  But do your research on them, if you find any.  Remember, phase I trials are just to determine tolerance and dosage and not effectiveness, and are riskier than Phase II and Plast III trials. 

I received Avastin with Carbo/Taxol and had 11 rounds of it as maintenance after my chemo treatments were completed.  My side effects were minimal, runny nose, some joint pain. It does not work like other chemo drugs, targeting all fast growing cells, so it does not have the typical side effects common with regular chemo drugs.   It is a targeted therapy and inhibits the body's ability to grow new blood vessels to supply the tumors with blood.  It targets the growth factor VEGF.  The tricky thing is that if VEGF is a problem for her, Avastin will help her.  If VEGF is not an issue she is dealing with, it will not.  I have been seeing a naturopath, who tested my VEGF level when I was finished with treatment and my level was high, so we worked to lower it.  It is not, however, a test that conventional doctors tend to run.  

Let me know if you have any other questions.  good luck.

Nicm

Tethys41 said:

Avastin

Hi again,

It sounds as if her doctor will be handling your mom's recurrance as if it is a first diagnosis.  Debulking and chemo,or chemo and debulking, has a high success rate.  If she has a lot of tumors, the doctor may opt to do chemo first so that her surgery is more effective.  It sounds as if she is on a good path. 

Unfortunately, the PARP/Immunotherapy trial is only for BRCA positive women.  I don't know if they have tested it on patients without that mutation, but if they have, it does not seem they are pursuing it.  You might want to go to the clinical trials website to see if there are any trials for people with Lynch syndrome.  clinicaltrials.gov  But do your research on them, if you find any.  Remember, phase I trials are just to determine tolerance and dosage and not effectiveness, and are riskier than Phase II and Plast III trials. 

I received Avastin with Carbo/Taxol and had 11 rounds of it as maintenance after my chemo treatments were completed.  My side effects were minimal, runny nose, some joint pain. It does not work like other chemo drugs, targeting all fast growing cells, so it does not have the typical side effects common with regular chemo drugs.   It is a targeted therapy and inhibits the body's ability to grow new blood vessels to supply the tumors with blood.  It targets the growth factor VEGF.  The tricky thing is that if VEGF is a problem for her, Avastin will help her.  If VEGF is not an issue she is dealing with, it will not.  I have been seeing a naturopath, who tested my VEGF level when I was finished with treatment and my level was high, so we worked to lower it.  It is not, however, a test that conventional doctors tend to run.  

Let me know if you have any other questions.  good luck.

Wow! It sounds like you are

Wow! It sounds like you are hitting your disease from multiple angles! So glad to hear avastin worked for you and you didn't experience the side effects others have. Can I ask: did you take avastin before it was FDA approved (since you mentioned it was a clicnial trial)? How did you go about finding a naturopath? Last time (5 years ago) we paid to speak to a natural doctor over the phone, but we never saw him in person (he was in another state). Thank you so much for the info! 

Tethys41

Avastin

Ncim,

My understanding, when I received Avastin, was that the trials had been completed, but the data was not assessed yet, so therefore it had not been fully approved.  I went to a teaching hospital for my surgery and the start of my treatment, and my doctor somehow talked my insurance company into covering Avastin.  I have no idea how he pulled that off because the first gyn/onc I consulted, who I did not use for my surgery, told me I would not qualify for it. 

I am lucky enough to have a very good naturopath, who was practicing in the town where I lived.  At the time, she had a general practice, with a focus on oncology, but has since started a consulting business, where she advises cancer patients.  I know of three good naturopaths, who consult with cancer patients over the phone.  If you are interested in their contact informaiton, send me an private message through this site and I will give you their information. 

Good luck

Nicm

Tethys41 said:

Avastin

Ncim,

My understanding, when I received Avastin, was that the trials had been completed, but the data was not assessed yet, so therefore it had not been fully approved.  I went to a teaching hospital for my surgery and the start of my treatment, and my doctor somehow talked my insurance company into covering Avastin.  I have no idea how he pulled that off because the first gyn/onc I consulted, who I did not use for my surgery, told me I would not qualify for it. 

I am lucky enough to have a very good naturopath, who was practicing in the town where I lived.  At the time, she had a general practice, with a focus on oncology, but has since started a consulting business, where she advises cancer patients.  I know of three good naturopaths, who consult with cancer patients over the phone.  If you are interested in their contact informaiton, send me an private message through this site and I will give you their information. 

Good luck

Hi Tethys41, yes i'd be very

Hi Tethys41, yes i'd be very interested in their contact info. I sent you a message. Look forward to hearing back! Thanks again!

Tracyannross

If I quit chemo how fast do the intestinal tumors grow?

I’m struggling with whether I should quit chemo. I want quality of life before it’s over and now I’m so fatigued and in pain during chemo I don’t know how much more I can handle.

Tethys41

Quitting chemo

Tracy,

I'm so sorry you are suffering so much.  Can your doctor give you anything for the pain?  It is very difficult to heal if you're in pain and you should impress on your doctor how much you are suffering.  Unfortunately, no one can predict how quckly the tumors would grow.  It depends on how aggressive the cancer is.  Some cancer is slow growing, while others are very aggressive.  I hope you find a solution to your situaiton. 

Good luck