Ovarian

[Pianoanddisco]

Hello beautiful ladies,

Has anyone been on Avastin or Elahere maintenance after chemo? If so can you share your experience. What were your side effects? How soon afterwards do the Drs recommend a CT scan while on maintenance.

Thanks for sharing.

[nordic5]

Hi, I was on Avastin, without great problems. First it was Avastin alone, then with Olaparib. CT every 6 months. Elahere is for platinum-resistent patents, so mayby in future.

[Pianoanddisco in reply to nordic5]

thanks for sharing nordic5, it's great to know you were ok with it.

[Alpacalama]

Hi I was on avastin inc with chemo carboplatin and paclitaxel after that finished it was avastin and olaparib. Avastin 18 months and finished Olaparib the month after (10 mths instead of 24 ) due to chronic fatigue. I think the Avastin was one responsible for high blood pressure as I after stopped it went back to normal. Also think it caused the neuropathy as that more or less righted itself once I finished it too.

[Pianoanddisco in reply to Alpacalama]

Hi Alpacalama, I too had chemo carbo and taxel with avastin together. but now they want to put me on maintenance only. Either Avastin or Elahere.

Are you done with your maintenance and if so, are they monitoring you with bloodwork and scans every 3 to 6 months?

[Alpacalama in reply to Pianoanddisco]

Yes I was moved to 3monthly checks and my last scan was August last year. CA125 stable around 45/50. I’ve normally got some inflammation in my body due to having psoriasis/arthritis. This last month I’ve had niggly period type aches, so I’m getting a ct scan soon just to be sure everything is ok. I maybe moved to 6month checks if all is clear. My oncologist seems to think because I’ve passed the 2yr NED it will be unlikely to recur. I can only hope he’s right! He’s always been very positive but quick to do scans if I’m worried so I can’t complain about treatment as it’s always the best. Unlike a few other ladies experience on here.

Keep in touch, wishing you the best

Pauline

[Pianoanddisco in reply to Alpacalama]

thanks so much for sharing Alpacalama. That's good to know...I'm glad your CA125 is stable. Wishing you all the best as well and yes, keep in touch !

[AnythingGoes25]

I went on to Avastin after chemo and surgery . I received 20 rounds. On the whole I had very little side effects apart from very painful joints.

[Pianoanddisco in reply to AnythingGoes25]

Hi AnythingGoes25,

Wow so far the majority of you ladies have very few side effects on Avastin. It sounds somewhat manageable. I appreciate your response, it eases my mind more.

thank you

[Minimarigold in reply to AnythingGoes25]

I had extremely painful joints no pain killers or gels lotions or potions helped while I was on avastin with olaparib, now I'm on just olaparib I still get awful joint pain and the neuropathy hasn't gone yet but I'm still here and still fighting and trying to kick this disease to the curb x x best wishes to you and all you lovely ladies

[Phoebe1962]

I am on Avastin, I started it at my second chemo treatment and am still on it. 18 treatments were initially recommended so I’ve two more to go before a decision on what next. I have 3 monthly CT scans. My joints ache due to it and my neuropathy has continued unchanged. Following the last two treatments I’ve had awful daily diarrhoea too which has not improved and is a rare side effect apparently. I’m seeing the Onc on Monday to discuss.

[Pianoanddisco in reply to Phoebe1962]

Hi Phoebe1962,

I'm sorry to hear about the rare side effect you are having. I'm sure your Onc can help with that. I have neuropathy in both feet since the beginning of my chemo treatments and hasn't improved.

I appreciate you sharing your response. thank you!

[Saintgermain]

I've been on Avastin for several months I've had no issues I'm tired the day after infusion but that's it I take my blood pressure every day which is normal, I run low anyway and use a nose spray daily.

[Pianoanddisco in reply to Saintgermain]

Hello Saintgermain,

Wow, sounds like you are doing quite well other than the tiredness after infusion. So far a lot of you ladies are on Avastin. It doesn't sound so bad, I feel less anxious now.

This forum has been so helpful to me. All the best with everyone!

[Saintgermain in reply to Pianoanddisco]

Plus its a short infusion only 30 minutes

[Pianoanddisco in reply to Saintgermain]

Thanks Saintgermain, 30 mins is not bad compared to all day at the hospital.

[Jmurphy6114]

Hello, I am in the US and currently in a clinical trial on Avastin and rinatabart sesutecan (Rina-S) - it’s called the PRO1184 trial and I have been through seven infusions. The trial requires frequent scans, about every six weeks-so far my disease is remaining stable and I am experiencing some shrinkage for which I am grateful; my CA125 At last reading was 16. I have been fortunate in that my side effects have been manageable - Avastin gives a lot of women extremely high blood pressure but I am working quite closely with my primary care doctor to manage that, I am currently on four different blood pressure medications to keep it in control. Additionally, I find that Avastin gives me a constant runny nose. The Rina-S does give you some low grade nausea but manageable with compazine or zofran. Other than that, I feel pretty good. I was on Elahere and it was only partially successful so my oncologist enrolled me in this clinical trial - my understanding is that you have to have a folate receptor positivity greater than 75% to be eligible.

[Pianoanddisco in reply to Jmurphy6114]

Hi there Jmurphy6114,

Sounds like you are managing your side effects on Avastin and Rina-S. Although blood pressure and nausea can be managed through medications, it's still a nuisance. The constant runny nose is not fun either.

I'm so glad you are doing well and you are remaining stable with this disease.

You mentioned Elahere was partially successful, may I ask why?

thanks for your response.

[Jmurphy6114 in reply to Pianoanddisco]

Hi again - I’m not sure why Elahere was only partially successful as my folate receptor positivity was 95%, but some of my lesions shrunk and some continued to grow while I was on it which is why my oncologist opted to put me on this clinical trial… Best of luck to you and whatever treatment decisions you decide to make!

[delia2]

Hi. Elahere is treatment, not maintenance. It would imply that you are not ned after frontline treatment and are now considered platinum resistant. I’m going on it today but this is my third recurrence. I assume you’ve been told you need to see an ophthalmologist first and follow the elaborate eye drop protocol. You should go to the Elahere website and read the instructions for eye care. Both Elahere and Avastin are given every three weeks.

[Pianoanddisco]

Hi delia2,

I was NED from frontline back in Oct 2023 then had my first recurrence on Aug 2024 so had 4 cycles of chemo, had CT scan recently and indicated 2 nodes were shrinking. it's less than 2 cms. Now they are comfortable putting me on a maintenance treatment with either Avastin or Elahere. And yes I was told to see an eye Dr. before starting.

Thanks for your input on this. I'll read up on the Elahere website. I will be seeing my Onc to discuss.

[Driebergen]

Hi!

I am on a combination of Elehere and Avastin every 3 weeks.

After 3 rounds it is Unfortunately not a “slam dunk” yet. There is still minor disease in 2 lymphnodes.

As of side effects: a bit of a higher blood pressure, some joint pain, fatigue and my platelets count is low. Oh and I get a weird crusty/ bloody nose. Very manageable side effects.

Good luck everyone!

[Atodd in reply to Driebergen]

I am on the same with the very same symptoms. The combo has kept the cancer from progressing but no shrinkage. This is my 4th recurrence. My dr. Has opted to keep me on it for now.

[Spes]

Hello. I was on Avastin for nearly 6 months but then suffere a rare but known side effect, compromised kidney function. If I'd continued my kidneys would have failed. The first sign that something wasn't right was a sudden dramatic increase in my blood pressure. As I say, this is rare, but it may be worth asking for regular kidney function tests as long as you continue on Avastin. Good luck.

[Grumps3]

Hi ladies. I've been reading your posts with interest. I live in Spain. Diagnosed March 24 with ovarian cancer. Three chemos, enormous op with HIPEC in July past and then another three .chemos. My CA125 came down but never to normal levels (135) and started rising from this January. I have a clean CAT scan and waiting for a PECTAC as it is called here. Full body scan. I am platinum resistant and would seem they didn't get everything as CA125 never came down to normal levels. Having said that, I know of women here who have their levels around 300 for years and no recurrence. Everyone is unique.

So I was told only option clinical trials and there are many here with Elahere which has been proven to work with platinum resistance. So I am waiting for something to show up on a scan and then my tumor sample will be tested for the folate criteria. So I am living in hope 🙏

I have been on Niraparib which is clearly not working, since December. I am BRAC and HRD negative so I also wonder if this is actually the right med for me. Does anyone know anything about this please?

I have to say I don't know what Avastin is and I believe Elahere is given intravenously every three weeks. It was approved in Europe Nov 24 and has not yet been financed in Spain.

I wish you all a beautiful day and really welcome being in an informed community. Cancer is a lonely place. 💞🪷