Side effects

[Nov5]

Hi lovely ladies,

I'm new to this forum, so apologies if question has already been aired.

I was diagnosed with Stage 3c serous ovarian cancer with peritoneal secondaries 1 year ago. I had 4 rounds of carbo/pac and 3 of Avastin prior to hysterectomy:BSO and extensive debulking. Had further 2rounds of carbo/pac/avastin. Commenced maintenance treatment in August of 3 weekly avastin and daily Olaparib. Initially could only tolerate half dose of Olaparib (300mgs instead of 600mgs).

Unfortunately CA125 doubling every 3 weeks since August gone from 18 to 125. Decided to try full dose of Olaparib 3 weeks ago to see if this stabilises CA125. Now experiencing quite debilitating muscle/joint pains, headaches,and extreme fatigue 😩.

Had blood test yesterday and will get results tomorrow when I attend for avastin infusion.

Have other ladies experienced these types of side effects? I'm starting to wonder if it's all in my head due to sub consciously worrying about cancer returning... my last CT showed nodularity in upper abdomen.

Thanks for reading my post.

Tam

[Lyndy2]

Hi Nov5

Sorry to hear you are struggling with side effects. Both drugs can produce them, hopefully your bt will show something such as anaemia which can be easily rectified.

I have had both but not together. Generally I found that Olaparib effects reduce with time whereas Avastin effects increased.

Give yourself a bit of time to get used to the new dose but make sure you have some heavy duty painkillers on hand too. Pain makes you tired and you should not really have to put up with it.

Worrying about the cancer coming back is something we all face. Don’t be hard on yourself, ask for support from your GP, local centre or the Ovacome helpline. I do periodically reach out and I find that just one conversationcan sometimes change the way I feel about things.

Best of luck, I hope that things resolve for you xx

[Nov5 in reply to Lyndy2]

Thank you Lyndy2 for your reassuring reply. At the moment I find the only analgesia that helps is Oxycodone 10mgs twice a day. I was so reluctant to take this, but at least it helps me to maintain mobility.

Hopefully I'll know more tomorrow when I get results.

Tam 🌹

[delia2]

Hi. What Lyndy said is true. Olaparib side effects can be really miserable for a few months but then get less prominent. They’re definitely not in your imagination. And aches and pains can be caused by both drugs you’re on. I’ve never even been on the full dose of Olaparib. Fortunately 400 mg worked for me. Are you BRCA positive or HRD? I hope it works for you. Xx

[Nov5 in reply to delia2]

Hi Delia2Thanks for your reply. It's reassuring to know its not in my head.

I'm BRCA 1.

Tam 🌹

[Kblaisel]

I think your pain can be attributed to the avastin. I had back and joint pain while on it. I’ve been on Olaparib and now Niraparib in clinical trials and didn’t experience side effects.

[Nov5 in reply to Kblaisel]

Thank you for your reply.It's funny how everyone reacts differently. I did come off the Avastin for 1 cycle to see if it was that and it made no difference. Then had Olaparib reduced to half dose and was manageable.

Unfortunately my CA125 has been doubling every 3 weeks so my oncologist persuaded me to try full dose again and symptoms been worse since. Sadly today I've been told my CA125 has still gone up now 129 (was 18 in August) so doesn't look like PARP's are working for me.

Oncologist seeing me on Friday.

BW

Tam

[Sashay2020 in reply to Kblaisel]

Kblaisel, I see from your profile that you are doing subq mistletoe & IV vitamin C. I am also doing the mistletoe and am interested in high dose Vitamin C. My oncologist said the vitamin C would neither hurt nor help me. Would you mind if I DM you?

Sashay

[Kblaisel in reply to Sashay2020]

Sure! We have to be our own best advocates and share knowledge with one another.

[Kblaisel]

I haven’t had a normal CA-125 for almost 2 years! It’s somewhere up around 500 now. I have been on 2 clinical trials without chemo and they have kept me stable. (Olaparib and Ceseratib (ATR inhibitor) and what I’m on now: Niraparib with Oregovomab I am trying to prevent going back on chemo, but will consider HIPEC in a clinical trial for recurrent HGSOC if it spreads from my lymph nodes. That trial is recruiting now, so when my current trial ends, I’ll go for a consult at Roswell in Buffalo. Otherwise, if not accepted, I’ll be looking for any trial that uses immunotherapy, biologic agents or vaccine before I go back on systemic chemo.

[Nov5 in reply to Kblaisel]

Wow.... you've certainly been through alot. Makes my concerns seem trivial in comparison.Can I ask your reasoning for avoiding further chemo?

[Kblaisel in reply to Nov5]

Conventional chemo is not very effective and creates resistant stem cells that lead to metastasis. I stopped after one treatment of carbo/taxol and later when my tumor was tested I found out that taxol would not be effective in my case. Unfortunately I experienced severe bone and nerve pain, peripheral neuropathy, hair loss and fast heart beat just from that one chemo! After 2 years when I recurred, I found an oncologist who gave me low dose carbo/Gemzar and avastin. I had no side effects at all. Since I recurred again after 6 months, I wasn’t surprised because chemo statistics aren’t very good, so I looked for clinical trials.

I’m not opposed to low dose to reduce tumor burden or HIPEC which is a one and done procedure. I would want my tumor tested again for agents that would actually work against my epigenomics. I really want to bolster my immune response and chemo lowers WBCs, NK cells, etc. If I do chemo again I would incorporate integrative therapies to help keep my immunity healthy and reduce side effects.

[Nov5 in reply to Kblaisel]

That's really interesting.Can I ask where you live as you mentioned a trial in Buffalo? 🌹

[Kblaisel in reply to Nov5]

I live in the Adirondack mountains near Lake Placid, NY I went to Roswell 3 years ago because I was interested in their vaccine study, but they wanted me to go back on chemo first. After I completed the chemo, I found out that the trial was completed 😩. It takes 7 hours to drive there. I drove over 5 hours to Dana Farber in Boston and now am flying to VA every 3 weeks and that’s an all day process.

[Sashay2020 in reply to Kblaisel]

Have you looked at the Avenge Bio trial? it should be opening soon in Houston Texas. Rice University, I believe. The requirements are posted online. This is not a blind study and involves implanting chemo “beads” in the peritoneal cavity near the tumor. It is designed to avoid the side effects of systemic chemo and actually references “curing” OC, which should mean no more chemo for at least five years. I’m 71 and dread a third round of chemo.

Sashay

[DinkyAnnecy]

Hi! I had terrible foot/heel pain for the first few months on Olaparib that mostly went away after 6 months. I also had the extreme fatigue where I would feel tired two hours after getting up in the morning and that too went away after about two months. Hopefully in time the side effects will decrease for you. Good luck 🙏

[Nov5 in reply to DinkyAnnecy]

Thanks for your reply. It's reassuring to know the side effects improve. You're absolutely right about the morning fatigue, it's so debilitating.

I'm wondering as I also have generalised osteo arthritis that the aches and pains seem particularly bad.

Thanks 🌹