On to my next treatment plan... - SHARE Ovarian Can...

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On to my next treatment plan...

gta03 profile image
14 Replies

I had Clear Cell Ovarian Cancer, I then had 3 rounds of chemo, a total hysterectomy, then 3 more rounds of chemo. I saw my Gyn/Oncologist in December, & she told me that I was in remission, & my CT Scan had no signs of Cancer.... But she wants me to start a maintenance of Avastin for 2 years. Has anyone else done this treatment plan, if so please tell me your experience. I am not happy with the prospect of high blood pressure tho.

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gta03
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14 Replies

I am on my second bout with ovarian cancer , last one 2017, started back in October 2021, have 4 more rounds of chemo. Then they said a cancer pill for the rest of my life. I am not down with that either.

gta03 profile image
gta03 in reply to

Thank you for replying! Good luck, & blessings to you Pfebus.

Heidels profile image
Heidels

Hi, I had a total hysterectomy Salpingo Oophectomy, appendix , cervix removed. They said they got it all, meaning the cancer but lingering microscopic cells COULD still emerge someday.They wanted me to start Zejula (naraparib) I debated that for months, unsure about it because of the horrible side effects. I was scared. Eventually,I decided to take it and have been taking 200 mg daily and have had no side effects and my labs are good.Been NED now for 2 years. The only thing I wonder about is how would anyone know if this inhibitor works. If I get a recurrence, it would be the first one, so did it stay away for the time it did because of my taking Zejula or would it have come back if I hadn't taken it? I read that inhibitors were given after a first recurrence,,this way they would know if it helped keep disease away for a longer time compared to your first recurrence. For all I know, maybe I would still be NED if I never took it at all!! The oncologist kept suggesting that I should take it and I eventually gave in.. So far, things have been fine. I go for regular blood labs and get CT scans every 3 months now. The hysterectomy went well but the abdomen pain afterwards was HORRIBLE !

gta03 profile image
gta03 in reply toHeidels

I am so glad everything is going well for you Heidels, & thank you for your reply! Blessings to you.

Wicomico profile image
Wicomico

I too had clear cell. My oncologist put me on one year of Avastin maintenance after the six rounds of chemo. On the Avastin, I continued to be exhausted and have some other not horrible, but annoying as hell, side effects-many of which the docs said were NOT because of the Avastin. (Chronic nausea stopped about 2 months after the last Avastin infusion -but "not related" to the Avastin. :))The hard part about clear cell is that there is relatively little known about the best way to treat it, because it is so rare. I struggle with whether I would do treatment again if mine recurs. It seems that each of us suffers different side effects, and the only way, I guess, to decide what to do is to think about your own quality of life and how it affects your enjoyment of it. My last Avastin was in Feb '21, and I still don't feel back to "normal" -but I am 62, so normal stinks anyway lol. I was very often exhausted, and lost a ton of muscle tone, but I was able to get together with family and friends (and nap the next day) throughout the treatments.

- I wish there was a simple way to decide/determine what to do. I do not think that there is.

- My very best wishes to you, and may you determine what you feel is best for you!

gta03 profile image
gta03 in reply toWicomico

Thank you @Wicomico for your reply! Yep we Clear Cell Ovarian gals do march to a different beat when it comes to our Cancer. Due to the fact that it is rare. I didn't realize that I had CC Ovarian Cancer until after my Hysterectomy, after they studied to tumor. My Oncologist told me that Clear Cell does not react to Chemotherapy at all. But I did very well on Chemo. Like I said I will be on Avastin for 2 yrs, unless they come up with a trial RX for me. Right now I feel really good, & not looking forward to be on Avastin...But of course I will do it, so I don't reoccur. Blessings to you!

Wicomico profile image
Wicomico in reply togta03

For what it is worth, I obviously did the chemo- carboplatin and taxol and Avastin-(all 3) and then an additional year of Avastin, and I have been 'cancer free' since just after the chemo. So I think that it does work-it is just the recurrence rate that is different from other OC

gta03 profile image
gta03 in reply toWicomico

I did the same treatment you have done, with chemo. I just wish that my Doctor would advise 1 year of Avastin. Thank you so much tho, this info is good to know.

Wicomico profile image
Wicomico in reply togta03

I sure wish that they had more answers as to what works for us!Best of wishes to you!

Lobster2 profile image
Lobster2 in reply toWicomico

I came across your reply and saw you were on Avastin for a time. I'm facing my 3rd recurrence and my oncologist (new doc for me after moving to different state) has recommended keeping me on my Rubraca (PARP inhibitor) and adding Avastin (indefinitely) infusions every 3 weeks. What are some of the issues you had with Avastin? I have another option to do 6 rounds of chemo (would be my 4th time taking chemo). I'm leaning toward trying the Avastin for awhile, doing follow-up CT to see if it's working. If not, then switching to the chemo option.

Wicomico profile image
Wicomico in reply toLobster2

Hi. My side effects included exhaustion, chemo brain (fogginess), intermittent nausea and generalized ashiness. I am still clear 1 1/2 years after end of Avastin, so, knock on wood.... perhaps it was effective, and therefor, with the issues. Best wishes to you!!

mswhoffman profile image
mswhoffman

Had a full hysterectomy with gall bladder removed. Been on avastin and lynparza maintenance PARP inhibitors, since June 2021. The avastin may cause fatigue and at times one can get nauseous. I make sure I eat a good lunch or breakfast before treatment.

Ova3 profile image
Ova3

I could not tolerate Avastin. It caused my BP to go very high.

Ova3 profile image
Ova3

I am starting Avastin again this week along with Amlodipine. A BP med.

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