Olaparib/Avastin for more than two years?

[FlowerRose]

Hello everyone,

I was all ready to wrap up my Avastin/olaparib treatment now that the two year mark is almost here. Everything I read everywhere says, Yep, two years of this maintenance after chemo and you're done. Now my onc today says "no need to cut it off if you don't want to, what do YOU want to do?" Eeek! How do I even know what I want to do?! He seems perfectly happy keeping me on this treatment which has thankfully worked so far, and doesn't foresee any toxicity problems (i.e., side effect of cancer treatment being a new, different cancer) and says why stop if it's working.

Huh! Not the conversation I was expecting. Has anyone other than our clinical trial warriors been treated w this combo for over the standard 2 years? I think this treatment is so new that there aren't even ppl who can say yes, am I right?

Only upside of stopping I can think of right now is i would love if my joints/muscles didn't constantly, always hurt. But do I want that bad enough to stop completely?

Your thoughts are valuable, please share ❤️

[Ruebacelle]

A toughie. Maybe base it on how you feel

[Guilane]

Hi FlowerRose. Are you in US? I’m in UK and have been told Avastin for 15 sessions (45weeks) and Olaparib for 2 years. If you don’t carry on, are there any other options? X

[FlowerRose in reply to Guilane]

I'm in the US. Yeah, I was told the same as you but now that it's down to it, the onc says continue if I want to! I actually don't know about any other options other than going off everything entirely. Hmm...I wonder if I can choose one or the other.

[delia2]

Hi. You’re right that it’s a new combo. If it were me I would ask about continuing with just Olaparib if you want to continue with anything. That way you have no infusions and presumably less joint pain, but I’m not a doctor. Good luck with your decision! Xx

[Pianoplayer731021]

Hi, I have been on Niraparib for almost two years and have joint and muscle pain also. Sometimes I feel worse, just depends if I have been more active. They will probably take me off in a few months. That seems to be the protocol in the U.S. I’m wondering if it is also because I am BRCA negative. Maybe if women are BRCA positive, they keep you on it longer. I’m going to ask the nurse about this next time. Just wondering if you are positive or negative and if you live in the U. S. Or the U.K. I sure felt muscle and joint pain, didn’t get much sleep last night. Donna

[FlowerRose in reply to Pianoplayer731021]

Yuk, sorry you're in pain too!I live in the US with City of Hope and am BRCA negative, but my tumors tested BRCA positive, so sometimes if that happens you're treated as a BRCA positive person.

[Loorunner]

Hi. Would you mind sharing what the side effects have been like having the Avastin/Olaparib combo? I'm about to start it and it's so new here in uk it's been hard to find out what it's been like for others on it? I'm being offered Avastin for 15 cycles and up to 2 years on Olaparib ar the moment. Thank you x

[FlowerRose in reply to Loorunner]

Sure! At first I experienced quite a bit of nausea which finally went away after 6 or so months. Then a strange tingling that would run through my whole body head to toe, a couple times a day. Also finally went away. The longest lasting and most persistent has been joint and muscle pain and general fatigue. I mean, I was never a mega active or peppy person, but I did do plenty of hiking etc and now just hurt all over, all the time. Hope your side effects are minimal!

[Loorunner in reply to FlowerRose]

Thank you for sharing. It's really good to hear the treatment is working well for you. You sound stoic about the side effects - I'm hoping the achy thing isnt too persistent as I do like to be active, but it's amazing how we adjust and cope with these things isnt it. Hoping everything goes well for you xx

[Realistic]

No experience of your situation, perhaps they could lower the dose to maintain you. Might just helps with your joints etc.,ld be reluctant personally to come off if its keeping you well.Except of course for your joints, pains not nice

but cancer not good its a tough one. Lets hope they can just tweak your dosage . Good luck in whatever you decide sending love SheilaFxxx

[DinkyAnnecy]

Hi There! I am from the US as well stage 3B and Brca1. Firstly, Glad to hear you are doing well, especially on both Olaparib and Avastin. Are you treated by Dr. Lin at City of Hope? A family friend mentioned his name.

[FlowerRose in reply to DinkyAnnecy]

My two docs are Dr. Kim and Dr. Lee. I see them in South Pasadena. Love them both to pieces.

[DinkyAnnecy]

Your post was helpful! Thank you for sharing.