Avastin with Olaparib dilemma. Who to go to for a 2nd opinion?

[Trickysite]

My onc. First said I could make a decision on whether I have Avastin with Olaparib or just Olaparib. Later said the group meeting advised Olaparib without Avastin best way to go for me as I have congenital Ehlers Danlos Syndrome which makes all my soft tissues too stretchy and prone to long term 2 year muscle spasm and might get a lot of joint pain which would stop my walking etc. But this would be a gamble on the likelihood of joint pain as nobody knows the effect on me as an individual. He said there are no proper directly comparative statistical results on whether BRCA 2 Stage 4 Oc like me do much better with Avastin. Wondering who to consult for 2nd opinion. Professor Gordon Jayston?? Suggestions welcome. I have never suffered from joint pain. Received last dose of first line carbotaxol yesterday. Had 6 cycles and my op 4 weeks ago. Thanks in advance, lovely ladies, to

[Lyndy]

That’s a tricky decision to make! I am guessing that if you went for Olaparib you might still be able to try Avastin later if you needed it? Your BRCA status suggests that the Olaparib would be a good fit because it was designed for us BRCA positive people. I also have rheumatoid disease..what they often won’t say or don’t know is how cancer meds will interact with another disease. I do get joint pain, so you might assume that Avastin would really mess with my joints but it didn’t. There may not be an answer for you except to try and see what happens…not reassuring but that’s what I found xx

[Trickysite in reply to Lyndy]

Interesting comment and good news on your Avastin experience. I do not have rheumatoid disease but Ehlers Danlos is a congenital over elasticity of ALL the soft tisssues.i only have it mildly but it can still involve 2year recoveryfrom lower back injury spasm. Olaparib is a definite. The question mark hangs over Avastin. I would have to have a 7th chemo in this case if I go for the combo with Avastin Yuk. And then fortnightly hospital Avastin infusions for a year. Olaparib is just pop the pills... really need comparative stats on 4b Oc but my onc says nothing available that directly relates to me.if Avastin did not agree with me. And upset my joints, the symptoms would resolve on stopping.

[Saffery1 in reply to Trickysite]

Not sure if this helps your decision, but when faced with a similar decision my gynae onc did say that Avastin on its own was a weak drug. I went on niraparib which worked at keeping me stable at 200mg, but unfortunately I had to drop to 100mg which didn't. Good luck x

[Trickysite in reply to Saffery1]

Thank you for your informative reply. Sorry to hear about your med. difficulties and wish you all good luck.

[Realistic]

I don't have any experience with these drugs, but hopefully you will find the right path too keep you well. You sound extremely positive which helps in our condition. Hope you get the right treatment and that it works. Sending love SheilaFxxx

[Trickysite in reply to Realistic]

Thank you for your kind comments and wish you all good luck.

[delia2]

Hi. If you read the results of the SOLO 1 trial of Olaparib you’ll see how positive the results were for BRCA positive people after frontline. Personally I don’t think Avastin would add much and it would give you more side effects. They haven’t studied the value of Avastin plus Olaparib versus just Olaparib. They have studied the value of adding a PARP to Avastin versus just Avastin. Obviously it’s your decision, but as Lyndy said, you could always have Avastin later. Good luck with your decision! Xx

[Trickysite in reply to delia2]

Thanks. I will definitely look that solo trial up. X

[Whybirdie]

Hi there. I’ve got a similar decision to make. BRCA negative, HRD positive. OC 3b, completed Carbo and Paclitaxol two weeks ago.

Onc says Olaparib definitely. If I’d like the combo, Olaparib and Avastin it’s up to me but I will not be offered Avastin again, ever. It’s now or never. She said there’s no right or wrong answer, it’s my decision. She also said I’d take it for 15 months.

Do I throw everything at it now or will I regret not taking Avastin should I suffer a recurrence sooner or later, and can I live with that guilt (although I’d have no choice!)?

The side effects look horrendous although we have to be told of every one. I was told Olaparib is generally well tolerated.

I wish you good luck with your decision. Sometimes I have to go with a gut feeling and I think this is one of them! xx

[Trickysite in reply to Whybirdie]

I am going to read the Solo 1 trial report as suggested by Delia above. May ask Prof Jayston if he has further info. Have a week or so to make decisions. Thanks for your helpful comment! X