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.

Carrie | @katycot | Oct 8 6:46pm
In reply to @charlotte12 "Thank you for the quick reply. Did you have the maintenance therapy with avastin (or bevacizumab)..." + (show)
@charlotte12

Thank you for the quick reply. Did you have the maintenance therapy with avastin (or bevacizumab) right after
your first line treatment? I need dental work done and avastin may interfere with healing of
my dental procedures. Oncologist recommended: No dental work, extraction, till 6 weeks after the last chemo treatment, then get my
teeth fixed, then wait another 3 weeks or so based on healing process, then I start the avastin treatment which is to last 30 minutes each time, no other drugs injected. Did you get a port or could you tolerate the infusion with the needle? Did you experience other side effects besides high blood pressure? I still deal with side effects from the last chemo, pain, neuropathy, fatigue, taste change.

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I had carbo taxol with avastin for 6 infusions, then I have avastin only every 3 weeks for about a year.

I did have a port, and it’s still used today highly recommend. I will keep mine as long as it works, maybe years.

I play a lot of racket sports and walk a lot. I noticed when I used legs too much my recovery time took longer while on avastin. I had quite a bit of leg pain, but it was manageable and I could still remain active

REPLY
1 reply
Denise | @denisestlouie | Oct 9 6:43am

I am still in chemotherapy. I requested to go into a trial so I could have a maintenance therapy. I'm HER2 +. The maintenance therapy will target that mutation. I wanted immunotherapy but I have an autoimmune disease and I'm not a great candidate for immunotherapy.

I've also seen a functional doctor who is prescribing my diet. I couldn't even guess at what to do in that area without his knowledge.

It's all time consuming. I want to live cancer free so I'm choosing more therapy.

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charlotte12 | @charlotte12 | Oct 11 10:57am
In reply to @katycot "I had carbo taxol with avastin for 6 infusions, then I have avastin only every 3..." + (show)
@katycot

I had carbo taxol with avastin for 6 infusions, then I have avastin only every 3 weeks for about a year.

I did have a port, and it’s still used today highly recommend. I will keep mine as long as it works, maybe years.

I play a lot of racket sports and walk a lot. I noticed when I used legs too much my recovery time took longer while on avastin. I had quite a bit of leg pain, but it was manageable and I could still remain active

Jump to this post

I will do the maintenance therapy after my visit with the dentist, on the port I'm not sure yet, if I will get it. How often do they test you for CA125?
Did you get neuropathy from your cabo taxols treatment, mine is bad in my toes?

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Carrie | @katycot | Oct 11 1:07pm

I really love having a port. When I was getting infusions of maintenance they pulled labs every 3 weeks. Now my labs are only every 3 months, and they are considering moving me to 6mos if nothing happens in the next 3 months.

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sheryljoy | @sheryljoy | Nov 11 9:10pm

Hello! I'm Sheryl and I am new to this site! I have mixed feelings about going on Lynparza 400mg due to the side effects, and I didn't know whether it would be worth it or not. I finished my IV chemo of carbo/taxol 2months ago, and have put off starting maintenance while we addressed a complication from my original surgery(hysterectomy). I wound up with a condition called hydronephrosis in one of my kidneys and have lost complete function in it. However my other kidney is perfect and my kidney levels are still normal. I am just concerned when I start the lynparza, will it affect my one remaining kidney. I also have high blood pressure now which concerns me as well. I was wondering if anyone can shed any light? Thank you!

REPLY
2 replies
cookercooker | @cookercooker | Nov 12 9:58am
In reply to @sheryljoy "Hello! I'm Sheryl and I am new to this site! I have mixed feelings about going..." + (show)
@sheryljoy

Hello! I'm Sheryl and I am new to this site! I have mixed feelings about going on Lynparza 400mg due to the side effects, and I didn't know whether it would be worth it or not. I finished my IV chemo of carbo/taxol 2months ago, and have put off starting maintenance while we addressed a complication from my original surgery(hysterectomy). I wound up with a condition called hydronephrosis in one of my kidneys and have lost complete function in it. However my other kidney is perfect and my kidney levels are still normal. I am just concerned when I start the lynparza, will it affect my one remaining kidney. I also have high blood pressure now which concerns me as well. I was wondering if anyone can shed any light? Thank you!

Jump to this post

Hi there,
I don't have any experience with your condition, but did have carboplatin and paclitaxil for endometrial cancer. I am about to go on hormonal therapy. I too am concerned that it will do any good, and neither does my oncologist. At this point it is the best of all "evils" as far as side FX. If it proves to be useless, or my condition worsens, I'd be put on targeted therapy, which my onc. referred to as "the big guns".
In any event, I strongly suggest you talk to your oncologist about your concerns and learn as much as you can about the treatment s/he is suggesting. In addition, have him/her refer you a kidney specialist to discuss the matter.

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1 reply
sheryljoy | @sheryljoy | Nov 12 11:20am
In reply to @cookercooker "Hi there, I don't have any experience with your condition, but did have carboplatin and paclitaxil..." + (show)
@cookercooker

Hi there,
I don't have any experience with your condition, but did have carboplatin and paclitaxil for endometrial cancer. I am about to go on hormonal therapy. I too am concerned that it will do any good, and neither does my oncologist. At this point it is the best of all "evils" as far as side FX. If it proves to be useless, or my condition worsens, I'd be put on targeted therapy, which my onc. referred to as "the big guns".
In any event, I strongly suggest you talk to your oncologist about your concerns and learn as much as you can about the treatment s/he is suggesting. In addition, have him/her refer you a kidney specialist to discuss the matter.

Jump to this post

Thank you so much for your thoughtful response. I appreciate all of your helpful suggestions. I wish you all the best as you continue on your journey!

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Denise | @denisestlouie | Nov 13 11:53am
In reply to @sheryljoy "Hello! I'm Sheryl and I am new to this site! I have mixed feelings about going..." + (show)
@sheryljoy

Hello! I'm Sheryl and I am new to this site! I have mixed feelings about going on Lynparza 400mg due to the side effects, and I didn't know whether it would be worth it or not. I finished my IV chemo of carbo/taxol 2months ago, and have put off starting maintenance while we addressed a complication from my original surgery(hysterectomy). I wound up with a condition called hydronephrosis in one of my kidneys and have lost complete function in it. However my other kidney is perfect and my kidney levels are still normal. I am just concerned when I start the lynparza, will it affect my one remaining kidney. I also have high blood pressure now which concerns me as well. I was wondering if anyone can shed any light? Thank you!

Jump to this post

I understand having competing health issues. I have Crohn's Disease and I'm being treated for a rare aggressive uterine cancer.

But cancer trumps Crohn's in my opinion. My maintenance drug can cause heart failure. I'm receiving what will be maintenance drug with my chemotherapy regimen already. We see from the echocardiogram that there has hee negative impact on my heart, (I didn't have heart issues going into this. )

I want to live. Bottom line is I'm going to try everything that has some science behind it to live. I decided I am going to add a cardiologist to my team to monitor my heart as I receive the treatments.

I also discovered that food choices can impact high blood pressure and Autoimmune diseases. I first worked with a dietitian to learn how to eat for health then I turned to a Functional Doctor to help me regain my health. Almost all his treatments address diet. It's a difficult transition to go from being someone who only knew the Standard American diet to a whole food plant based diet.
For me it's worth risking my heart health to survive cancer, but I'm going into it knowing the risk and I'm trying to initigate him as much as possible

REPLY
1 reply
sheryljoy | @sheryljoy | Nov 13 1:41pm
In reply to @denisestlouie "I understand having competing health issues. I have Crohn's Disease and I'm being treated for a..." + (show)
@denisestlouie

I understand having competing health issues. I have Crohn's Disease and I'm being treated for a rare aggressive uterine cancer.

But cancer trumps Crohn's in my opinion. My maintenance drug can cause heart failure. I'm receiving what will be maintenance drug with my chemotherapy regimen already. We see from the echocardiogram that there has hee negative impact on my heart, (I didn't have heart issues going into this. )

I want to live. Bottom line is I'm going to try everything that has some science behind it to live. I decided I am going to add a cardiologist to my team to monitor my heart as I receive the treatments.

I also discovered that food choices can impact high blood pressure and Autoimmune diseases. I first worked with a dietitian to learn how to eat for health then I turned to a Functional Doctor to help me regain my health. Almost all his treatments address diet. It's a difficult transition to go from being someone who only knew the Standard American diet to a whole food plant based diet.
For me it's worth risking my heart health to survive cancer, but I'm going into it knowing the risk and I'm trying to initigate him as much as possible

Jump to this post

Hi Denise. Thank you for sharing. I have also looked to what I can control in this journey and changed my diet and exercise, but I still have room to grow. However, I have learned a great deal about ultra-processed foods and their impact on chronic health issues, and I am overwhelmed by the negative impact it has had on our culture. And for the most part, I, as well as many others, have been oblivious to the reality of the situation. I know it is difficult to make the change, as I am a chocoholic and have always loved sweets! But I agree, it is the lesser evil in this case. I, too, have experienced irregular heart rhythms, and I am scheduled for an echo myself. I wish you the very best as you move forward. Thank you again.

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