1. < Gynecologic Cancers

Ovarian Cancer: Should I go on Maintenance Therapy?

Posted by dianainstaug @dianainstaug, Oct 7, 2020

Hello
My name is Diana and I was diagnosed with Stage 3B ovarian cancer in April. Just finished my last chemo treatment two weeks ago. I need to decide if I want to go on a maintenance drug (Neraparid) or not. I am BRCA neg, but am HRD positive and have a high LOH score. From what I could decipher from the trial done with this drug, it looks like I could on avg only add 10 months of progression free survival. I am still dealing with the neuropathy side effect in my feet from chemo. I can't imagine starting a new drug now, even if it is not as potent as my chemo drugs. I also really don't want to be feeling sick and tired for a year or two, if I have those side effects. I have been on medical leave but have to return to work in a few weeks at an elementary school. Possible side effects and monthly blood draws, just seems like a challenge when working full time. My question to the group is if there is anyone who has chosen not to go on a maintenance drug. How are you doing? Is there anyone who has gone on the maintenance drug but wishes they had not? I really want to give my body a chance to heal from chemo. and I really am trying to make healthy lifestyle choices (diet, exercise, sleep, emotional support, etc.) in hopes to support my bodies own healing abilities. I am thrilled Mayo offers integrative health support and have been taking advantage of all that is offered!

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

kmulawski | @kmulawski | Oct 18, 2022
In reply to @katycot "I have had avastin with my chemo which just finished. I have experienced high blood pressure,..." + (show)
@katycot

I have had avastin with my chemo which just finished. I have experienced high blood pressure, recurrent headaches and now have learned I have extremely high lipids which were never a problem before. Now chemo is finished and I believe the plan is to continue avastin, and will know the plan after scans are done in a couple of weeks.

I have reservations on doing this due to the side effects I have suffered already and don’t know if there is any true benefit or need. There was nothing in my genetic study to hitch onto for assurance doing it would be beneficial and what I have read seems to indicate IF there is benefit it would be only months.

It’s very difficult to know what to ask and what decisions should be made.

Jump to this post

Hi Katycot, this is Karen M and I am in a similar situation where I am trying to decide if maintenance therapy is worth it for someone who has no genetic indicators that PARP therapy will be beneficial. I was diagnosed with stage 4 a little over a year ago and have had 9 chemo sessions and debulking surgery. Is there anyone on this discussion with no mutations who is taking PARP inhibitors?

REPLY
1 reply
jbickler | @jbickler | Oct 19, 2022
In reply to @kmulawski "Hi Katycot, this is Karen M and I am in a similar situation where I am..." + (show)
@kmulawski

Hi Katycot, this is Karen M and I am in a similar situation where I am trying to decide if maintenance therapy is worth it for someone who has no genetic indicators that PARP therapy will be beneficial. I was diagnosed with stage 4 a little over a year ago and have had 9 chemo sessions and debulking surgery. Is there anyone on this discussion with no mutations who is taking PARP inhibitors?

Jump to this post

Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both wanted me too. I have have very few side effects and so far everything had gone well and no recurrence after a year. You just have to be very vigil on you health’s and signs that change in your body. I am getting Chest-Abdomen-Pelvis CT Scan every 6 months for the next 3 years. So far it’s been a year and no recurrence. I wish you all the best and I think it’s your own choice and I feel so lucky to have that choice.
Be well!!!

REPLY
3 replies
kmulawski | @kmulawski | Oct 20, 2022
In reply to @jbickler "Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both..." + (show)
@jbickler

Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both wanted me too. I have have very few side effects and so far everything had gone well and no recurrence after a year. You just have to be very vigil on you health’s and signs that change in your body. I am getting Chest-Abdomen-Pelvis CT Scan every 6 months for the next 3 years. So far it’s been a year and no recurrence. I wish you all the best and I think it’s your own choice and I feel so lucky to have that choice.
Be well!!!

Jump to this post

Thanks for your kind input. I will be discussing maintenance therapy with my Mayo oncologist on Nov 8th. Best to you also. K

REPLY
kmulawski | @kmulawski | Oct 20, 2022
In reply to @jbickler "Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both..." + (show)
@jbickler

Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both wanted me too. I have have very few side effects and so far everything had gone well and no recurrence after a year. You just have to be very vigil on you health’s and signs that change in your body. I am getting Chest-Abdomen-Pelvis CT Scan every 6 months for the next 3 years. So far it’s been a year and no recurrence. I wish you all the best and I think it’s your own choice and I feel so lucky to have that choice.
Be well!!!

Jump to this post

May I ask which maintenance therapy drug(s) you are taking? Thanks again, K

REPLY
1 reply
jbickler | @jbickler | Oct 20, 2022
In reply to @kmulawski "May I ask which maintenance therapy drug(s) you are taking? Thanks again, K" + (show)
@kmulawski

May I ask which maintenance therapy drug(s) you are taking? Thanks again, K

Jump to this post

The maintenance medication I am taking is Zejula 100mg daily…

REPLY
1 reply
egins1208 | @egins1208 | Nov 15, 2022

I tried a neraparid drug after completing chemotherapy and had to stop it within 10 days because my blood rest showed an almost complete loss of platelets. Had I cut myself or been in an accident I could have bled to death.

Since then I have been getting infusions of Avastin for 18 months. Now CT scan shows regrowth of tumors. Oncologist wants me to resume original chem treatments (carboplatin and pacitaxel) with all their uncomfortable side effects. Has anyone in this situation
got any advice?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022
In reply to @egins1208 "I tried a neraparid drug after completing chemotherapy and had to stop it within 10 days..." + (show)
@egins1208

I tried a neraparid drug after completing chemotherapy and had to stop it within 10 days because my blood rest showed an almost complete loss of platelets. Had I cut myself or been in an accident I could have bled to death.

Since then I have been getting infusions of Avastin for 18 months. Now CT scan shows regrowth of tumors. Oncologist wants me to resume original chem treatments (carboplatin and pacitaxel) with all their uncomfortable side effects. Has anyone in this situation
got any advice?

Jump to this post

Welcome @egins1208, I'm sorry to hear that Zejula (niraparib) was not a good option for you. Thank goodness the low platelet count was discovered.

I know you're not looking forward to the unwanted side effects of returning to carboplatin and pacitaxel, but I'm glad that is an option for you. Members like @pauldale4 @pbprice @susu2 may be able to share their experiences of Carbo/Taxol for maintenance therapy for ovarian cancer and managing side effects.

Egins, what side effects did you find the most challenging the first time you were on Carbo/Taxol?

REPLY
1 reply
egins1208 | @egins1208 | Nov 20, 2022
In reply to @colleenyoung "Welcome @egins1208, I'm sorry to hear that Zejula (niraparib) was not a good option for you...." + (show)
@colleenyoung

Welcome @egins1208, I'm sorry to hear that Zejula (niraparib) was not a good option for you. Thank goodness the low platelet count was discovered.

I know you're not looking forward to the unwanted side effects of returning to carboplatin and pacitaxel, but I'm glad that is an option for you. Members like @pauldale4 @pbprice @susu2 may be able to share their experiences of Carbo/Taxol for maintenance therapy for ovarian cancer and managing side effects.

Egins, what side effects did you find the most challenging the first time you were on Carbo/Taxol?

Jump to this post

Thanks for the contact. On that chemo combo I have experienced constipation and diarrhea; I have also had fevers that come and go. Fatigue, joint aches and hair loss I expected, but the fevers were really upsetting.

REPLY
dorota52 | @dorota52 | Dec 5, 2022
In reply to @jbickler "Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both..." + (show)
@jbickler

Hi, I too had no genetic indicators but both my oncologist surgeon and my oncologist both wanted me too. I have have very few side effects and so far everything had gone well and no recurrence after a year. You just have to be very vigil on you health’s and signs that change in your body. I am getting Chest-Abdomen-Pelvis CT Scan every 6 months for the next 3 years. So far it’s been a year and no recurrence. I wish you all the best and I think it’s your own choice and I feel so lucky to have that choice.
Be well!!!

Jump to this post

Hi there.
Have you started Zejula after the first line of treatment?

REPLY
jm | @jodimj | Dec 30, 2023
In reply to @katycot "I have had avastin with my chemo which just finished. I have experienced high blood pressure,..." + (show)
@katycot

I have had avastin with my chemo which just finished. I have experienced high blood pressure, recurrent headaches and now have learned I have extremely high lipids which were never a problem before. Now chemo is finished and I believe the plan is to continue avastin, and will know the plan after scans are done in a couple of weeks.

I have reservations on doing this due to the side effects I have suffered already and don’t know if there is any true benefit or need. There was nothing in my genetic study to hitch onto for assurance doing it would be beneficial and what I have read seems to indicate IF there is benefit it would be only months.

It’s very difficult to know what to ask and what decisions should be made.

Jump to this post

What did you do? What was your experience , I share your concerns of yester year.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.