Hi ladies confused 🤔avastin question?

[Newbery3]

I'm getting my 3rd chemo tomorrow and just read that avastin isn't offered if you have more than 2 chemotherapy treatments? Is this a mistake? I haven't had my operation yet and scan is booked after 3rd to see if I'm ready so couldn't start avastin til after that as it doesn't help with healing. Anyone had avastin after 1st line treatment??? Thank you 😊 Rhian

[Rosebine2]

Dont know much about Avastin, but I would think it means 2nd line not cycle. others on here will know

[Lovedogs41]

Hi I was offered Avastin after frontline chemo.

They said they would give the first one with the last carbo/taxol and then continue every 3 weeks for 18 cycles.I chose not to have it.

[Newbery3 in reply to Lovedogs41]

Can I ask why you chose not to? I'm reading up on it and will wait to see how I get on and what my options are , I'm stage 4 hgs x

[Lovedogs41]

I’m stage 4 aswell.Umm I felt that my body and my immune system needed to recover from the chemo and I didn’t want to be taking anymore drugs with unpleasant side effects.My oncologist said it might only delay a reoccurrence by 3 to 4 months on average.I also wanted to follow a more holistic approach.

[delia2 in reply to Lovedogs41]

Hi. I made the same decision about Avastin. The side effects didn’t seem worth the benefit but I have read that it provides relatively greater benefit to those who have suboptimal debulking.

[Newbery3 in reply to delia2]

What's suboptimal? Sorry lol I'm not up on the lingo! X

[Lovedogs41 in reply to Newbery3]

If the surgeon is unable to remove all visible disease during the debulking surgery.

[Lovedogs41 in reply to delia2]

Yes i believe it does,in which case it could be helpful x

[Tillymint61 in reply to Lovedogs41]

Not for me it didn't. My op was stopped because I had a bleed on the liver whilst removing adhesions from it.so was told next day they hadn't removed it all. Avastin didn't work for me I had 11 of the 18 in total with a steady rising 125 over the last 6 treatments so back on carbo for 6 more. Got good response so on maintenance.

[Newbery3]

Yes I'm thinking about that myself but need to see what my scan shows, I go to oxygen therapy and take turkey tail and reishi mushroom capsules, cbd and I've bought yge vit D3 ready for after the chemo! Also stopped wating sugar and meat 🤯🤯 need to read up more pros and cons 🤔 thanks for replying x

[Lovedogs41 in reply to Newbery3]

Yes I think it’s wise to wait for your scan.I do hyperbaric oxygen therapy aswell and take mushrooms etc if your interested have a look at the always Hope cancer fb group,some great info and protocol ideas on there about the metabolic approach x

[Newbery3 in reply to Lovedogs41]

Great yes will do! Thank you X

[Caleda4]

If you are on 1st line chemo, then you could be offered avastin towards the end of 1st line treatment. I am on 3rd line so if I have I will have to pay. I hope your treatment goes well.

[Newbery3 in reply to Caleda4]

Thank you 🥰 I wonder how much it is🤔why should we gave to pay! So frustrating x

[Katmal-UK]

Hi I trialledAvastin in 2007 alongside chemo after my op. OC 3b HGS and achieved remission of just under 4.5 years. It maybe that you will need to wait until afyer yr op. Defo worth speaking with your onc. Good luck. Kathy xx

[Newbery3 in reply to Katmal-UK]

Thanks Kathy ☺️ I will xx

[Melnie]

Hi, I was only allowed avastin on my first round of chemo and yes you're right, usually if you've had it once you're not offered it again, there is another version though you could ask for but i'm sorry I don't remember it's name ask for the equivalent, good luck

[Morini]

Hi, I am on Avastin. I had 6 chemo (paclitaxil/carboplatin) pre-op and then it was included in my last two (7 and 8) post op, now I've had 5 of Avastin on its own. I'm finding it quite do-able, I have aches and pains but they're manageable, I've started back to work, riding my pony etc. Best wishes xx

[Newbery3 in reply to Morini]

Brilliant news 👏 x

[meadowgirl]

Hi. I had Avastin with first two rounds of chemo, Taxol/Carbo but they withheld the third as I was due debulking surgery and it increases the risk of bleeding.

After surgery I resumed Avastin with the final three rounds and I am staying on it as part of maintenance treatment with Olaparib. I am HRD positive. My guess is that they withheld your third to reduce the risk of bleeding in surgery. I suggest you ask the team if they are going to start it again after your surgery.

[Rankij11]

I was considered for it in a trial regime at start of treatment in2019 . But one of the cancer growths was too near to bowel . They then can’t use as risk of bleeding /complications to bowel Best wishes for rest of your chemo/op

Jennifer

[hilaryjane]

Are you taking Turkey Tail in a trial? I'm interested to find out more as I had to stop Avastin due to side effects and read somewhere that TT has same action ad Avastin. Thanks

[Newbery3 in reply to hilaryjane]

No I'm just taking ad a supplement, I told my oncologist and she said it's fine, it's to help white cells and prevent growth and spread , I watched and read that it can be very successful x

[Loorunner]

There are a couple of useful webinars about Avastin on the Ovacome website by Dr Gordon Jayson. Worth a watch. I started Avastin during my 1st line treatment on cycles 2, 5 and 6 and am carrying on with it in combination with Olaporib. It makes me a bit achy but otherwise fine. Good luck and hope your surgery goes well. Xx

[Newbery3 in reply to Loorunner]

Thanks for the advice will watch that then x

[OvacomeSupport Partner My Ovacome Team in reply to Newbery3]

Hi Newbery3

Thank you for your post. I can see lots of members of the forum community have shared their experiences on this topic which I hope has been helpful. Have you had the opportunity to discuss the eligibility criteria for bevacizumab (Avastin) with your oncologist or a member of your clinical team at all? They should be able to provide you with personalised guidance about this. Please do let us know if you would like any support to prepare for any upcoming appointments.

If you're interested in watching the recent Ovacome webinar with Professor Gordon Jayson about the effectiveness of bevacizumab (Avastin) and related trials, it's available on our YouTube channel here: youtube.com/watch?v=EAPjR3L...(Not working as expected?) .

You may also be interested in our targeted therapies information resource which can be found on our website here: ovacome.org.uk/targeted-the... . This includes a recording of another Ovacome webinar with Professor Gordon Jayson about treating ovarian cancer with anti-angiogenic agents such as bevacizumab (Avastin).

I hope you will find these useful. Please don't hesitate to get in touch with us if you would like to talk anything through. You can call our support line on 0800 008 7054, email us via [e-mail] or send us message directly through this forum. We’re here Monday – Friday, 10am – 5pm, to respond to questions, provide information resources or just have a friendly chat.

Best wishes

Annie - Ovacome support

[Tillymint61]

I had Avastin with 1st 3 treatments Then scan where descion to operate was taken.(if for you they had always planned to operate that may be why you haven't had Avastin yet), I then had carbo on it's own in January then operation in March.(Agap of 8 weeks off Avastin) then Post op. Chemo's included Avastin and then further Avastin on it's own.

[Newbery3 in reply to Tillymint61]

Thanks ☺️ xxx

[KimLJ]

Hi there. I had Avastin 18 cycles. My chemo was taxo/carbo and Avastin. I had 4 chemos then surgery so on chemo 4 Avastin was omitted. After surgery had the last 2 chemos and then continued Avastin. My personal view was throw anything on offer at the Cancer. I’ve been NED (no evidence of disease) for 3 and a 1/2 years. Diagnosed High grade serrous 3C ovarian cancer. Good luck xx

[Tillymint61 in reply to KimLJ]

I developed an allergy to paxotaxel so couldn't have after 1st combi you mentioned. I have had carbo on it's own and then with Avastin post op then Avastin on it's own but it didn't do much so second line carbo given on it's own for 6 cycles. I got a good response but unfortunately have never got to NED. I am on Rubraca now which seems to be keeping it at bay. I have primary peritoneal stage 4C HGS.

[Newbery3]

That's amazing 👏 thank you xxx

[Jack1066]

I had Avastin for 3 cycles before surgery then 12 after. Only side effect was stiff shoulders and neck. Glad I had it x

[hilaryjane]

What did you read about Turkey Tail supplements? Would be interested to find out more. Thanks.

[Newbery3]

Well if you look up Paul stammets on you tube he explains things as he's the expert but basically it helps you recover during chemo with producing white blood cells and it fights cancer cells. There also reishi mushrooms recommended but read up for yourself and let your oncologist know if you decide to use them, my oncologist was all for it and told me that she couldn't clinically judge or recommended them but had heard they are used in Asia along side treatments xxx

[OvacomeSupport Partner My Ovacome Team]

Hi everyone

Thank you all for your replies to Rhian’s question and for sharing your experiences.

I can see that some people would like to learn more about medicinal mushrooms such as turkey tail and reishi, so I hope the below resources may be useful:

- Memorial Sloan Kettering Cancer Center have an online database called About Herbs. This provides lots of information about various, herbs, botanicals and supplements in relation to cancer and cancer treatments.

Here is their information about coriolus versicolor, also known as turkey tail: mskcc.org/cancer-care/integ...

Here is their information about reishi: mskcc.org/cancer-care/integ...

- Cancer Research UK also provide some information on mushrooms in cancer treatment: cancerresearchuk.org/about-...

- National Cancer Institute (US-based organisation) offer information on medicinal mushrooms:

cancer.gov/about-cancer/tre...

There isn’t presently any evidence for the use of turkey tail with ovarian cancer although there have been studies with other cancer types with mixed results. It’s really important to let your medical team know about any supplements or other complementary treatments you are using, so they can be aware for any drug interactions or other contraindications.

If anyone is planning on making any purchases, please do ensure you’re buying from a reputable supplier. There is more information on this in this British Dietetic Association factsheet: bda.uk.com/resource/supplem...

I hope this information is useful. Please do get in touch with us if you have any questions there is anything further we can help with. You can call us on 0800 008 7054, email [e-mail] or message us directly through this forum if you prefer. We’re here Monday – Friday, 10am – 5pm, assist with queries or concerns, provide relevant information resources or just have a friendly chat.

Best wishes

Annie – Ovacome support

[Newbery3 in reply to OvacomeSupport]

Brilliant ❤️ 👏 I love this group! I don't know where I'd be without my teal army 💪🦋

[Lind58]

My mom used it for her roccurrance. She had doxil and carbon then avastin.

[Saffery1]

I had Avastin with frontline (with 1 month break before and after debulking due to risks of bleeding). I could have chosen it as frontline, but had Niraparib instead. When Niraparib made my bloods tank I had to come off it, and was then told Avastin was only offered as maintenance after surgery; my oncologist did say it was a weak drug on its own. Cost of 10 months maintenance is around £21k. It can buy time of up to 6 months, but as drugs for recurrences only add time anyway my view is that it all adds up!!