Thoughts On Avastin

[LPorter]

Today I had cycle 6 of 6 taxol/carbo having been diagnosed with stage 4a OC in June this year. I had surgery in Oct. My response to both has been excellent and today I feel healthy and energetic. My medical team are very encouraged by my response and don't think that at this time I could be any better. Having read very many of your posts over the last months I noticed how many of you are receiving Avastin. I raised the subject at my review yesterday and am meeting with the cons next week to discuss in detail. It is not straightforward as it is not generally available where I live. Can I ask you about the good and the bad about this drug and why your consultants prescribed for you. More importantly is it working?! Are there any issues or questions that I should be aware of next week? Thank you so much.

[agnesslouise]

I have stage 3c OC & like you have done really well. Carbo/taxol finished in Jan 16, scan March 16 was NED & had 13 of 18 cycles of Avastin. Sep16 CA125 started rising so Avastin stopped at 13 cycles. CT scan still NED but CA125 still rising so starting 6 cycles of carbo/taxol again on thurs 1st Dec. Guess Avastin hasn't worked for me xxx

[Suellen2015]

I'd like to hear more about avastin...this may be an option for me to add to the taxol chemotherapy....but I am wondering...considering the toxicity and side effects, does the benefit outway the risks or add enough time to my life span to make it worth while. I read it could perforate you bowel and intestines...on top of chemo....is it worth it? Im in Canada..the province in which I live are considering covering it under our medical program but it will take a couple of months to see if they approve it for ovarian; otherwise I am paying out of pocket...3,500 a shot. for the sake of 2 months extension of life....I think Id rather give the money to my grandkids or take a trip. Does anyone know about immuntherapy and ovarian cancer? Has anyone ever participated in trial and has it worked of Ovarian cancer?

[LPorter in reply to Suellen2015]

Thanks Suellen, I really appreciate your reply.

[Suellen2015 in reply to LPorter]

Your welcome...Id do a little more research on it...everyones system is different and the onc nurse yesterday said well chemos toxic too....so Im not sure...I have a clinic visit next week and have a list of questions to ask about it. Are there any clinic trials with immunotherapy in the US? If they can get it into phase 2 or 3..the safety of the trial is tested and if it passes that's a good sign...but I was told by a researcher in Canada..it usually takes about 5 years to get approved by Health Canada and etc...so I guess it's to hang in there as long as you can...they are discovering new treatments all the time.

[Katmal-UK]

Hi I was on the Avastin trial back in 2007/8 (for OC Stage 3) and had a remission of just under 4.5 years. There were minimal side effects (raised BP, blocked nose, nose bleeds when blowing your nose constantly, aches and pains and the usual fatigue but perfectly doable) and I worked fulltime whilst on it. Take Care. Kathy xxx

[agnesslouise in reply to Katmal-UK]

Was the trial just 18 cycles of avastin? I've been devastated that mine has returned so quick. My oncologist told me in march to look at my life in 2 to 3 year windows & it came back 6 months later!!

[agnesslouise in reply to agnesslouise]

Also like you minimal side effects.

[Katmal-UK in reply to agnesslouise]

Hi, yes it was 18 cycles. Oh I've not heard about the 2-3 year windows but I am not surprised. Although my mums never came back.

[LPorter in reply to agnesslouise]

Thank you so much for taking the time to reply Agnesslouise and I hope that you are well.

[Lyndy]

Hello

I am also stage 4 and had a good response to initial chemo/ surgery. I began Avastin with my final chemo and I'm now on ten of 18 Avastin cycles. The side effects list is scary but I am pleased to have been offered it. I certainly don't feel toxic like I did on chemo but I have suffered high BP and nosebleed.

I think it has been shown that it can delay recurrence by preventing blood vessels forming around new tumours...so I was pleased to give it a go. I'm a bit fed up with it now but I know I will never get it funded again so another 4 months is not sooo long to put up with the inconvenience.

Hope that helps! L xx

[LPorter in reply to Lyndy]

Thank you Lyndy I really appreciate your reply.

[GBIRVMIC]

Hi LPorter I was diagnosed 3C in December last year had 6 cycles of carbo/taxol with Avastin. I'm now having just Avastin and on #14 (4 more to go every 3 weeks). Side effects not as brutal as chemo but I do have aching joints legs and hip, runny nose, headaches, stomach cramps, croaky voice and get very tired. I'm back to work 5 days a week/5 hours a day. It's certainly manageable and I'm pleased to be offered the drug. Love Michelle x

[LPorter in reply to GBIRVMIC]

Thanks so much for your reply, the theme here seems to be that the side effects at manageable which is encouraging.

[ssjmichael]

My mom has been on Avastin maintenance since Febraury. She also had it every 3rd week when she had chemo. She has tolerated it very well, only side effects being a slightly raised BP, which we got meds.for, and a daily, but not constant stuffy nose.

As with others, my mom's CA-125 has started to rise slowly right aeound her 12th treatment. I don't know if this is a sign of it not working, or if it's just that it just takes an increasing toll on your body, and causes more inflammation. She had a PET scan yesterday, so we'll see.

I don't think there's a lot of downside with it, and there's potentially a whole lot of upside if it can significantly prolong a recurrence.

[LPorter in reply to ssjmichael]

Thank you. I am trying to gather as much info as possible at this time prior to meeting cons next week. My feeling at this time is that the advantages outweigh the disadvantages.

[Chele21]

I have all the symptoms from being on Avastin the others have all said about, but I am not in remission I still have 4 tumours the chemo couldn't get rid of so I'm classed as terminal. I have had 48 sessions of Avastin and stilll going , my ca125 seems to stay around the 20 mark. When ever my joints hurt, nose very sore ect I just think I'm still alive enjoying life, holidaying, working part time and enjoying my grandson who I never thought I would live to see. If given the chance try it. All the best. Chele

[LPorter in reply to Chele21]

Thank you for your very encouraging reply.

[Rosewall101]

Hi there. I did carbo /taxol for 6 sessions. Then after a 2.5 month break my onc started Avastin. I've now had 1 session. My dr restated my cancer from a 2a to a 3c. Because of this they were able to offer avestin (as a 2a it wasn't an option on the NHS). My dr was happy for me to have this break before Avastin started but didn't want to wait for it to start in 2017. I'd hoped for a few months off drug free.

Just seeing how things go on it. Mainly dizziness and a headache so far. But so much better than chemo.

Best wishes

T. X

[LPorter in reply to Rosewall101]

Thank you. It is not an NHS option for me as it is not available where I live, the old post code lottery. Whilst my treatment has been on the NHS I am fortunate enough to still have private medical insurance and funding from them is a possibility. Lets hope they come good!

[luluw]

Hi

I had the usual 6 cycles of Carbo/Taxol and have responded as well as you. I finished in May and my CA125 is still only 6. They tried adding Avastin into my second cycle of chemo but it made the side effects (particularly the leg pain) so much worse that I stopped it. My oncologist suggested I try it on it's own when my chemo finished. I tried again but it made me so tired and my joints hurt so much that I decided that an extra miserable 6 months wasn't worth it and stopped the Avastin again. I have concentrated on getting fit and healthy and enjoying what time I have left, however long that is. I haven't regretted the decision. I can walk in the hills, I can dig the garden and I can shoot my longbow, none of which I could do if I was on Avastin.

Good luck with your decision. May we both stay healthy for a long time!

Lou xxxx

[LPorter in reply to luluw]

Thanks Lou for your reply. I am with you on quality of life, that is what matters to me most too. lots to think about. Glad to hear that you are living life to the full!