Avastin

[delia2]

I’m in the US and have a choice about adding in Avastin to my first go of chemo and of being in a trial that requires 22 treatments of Avastin for maintenance. The doc said Avastin would only add 2 months without recurrence. I wonder what others would recommend-especially about side effects?

[Seasun36-uk]

Hi Delia,

I’ve just finished my Avastin (18) and am glad! Lots of aches! BUT it is supposed to be a very good drug....so I am pleased I had it. Just a few years ago, it wasn’t available to OC patients in the UK.

Some ladies don’t seem to get many side effects..

I’m sure other ladies will reply. What do your team think?

Best wishes,

Linda xoxo

[delia2 in reply to Seasun36-uk]

Thanks, Linda. I’m getting conflicting advice about Avastin. So I appreciate any advice.

[Yoshbosh]

Hi Delia,

My worst side effects were with my nose - it gave me nose bleeds and lots of mucous. However, they weren’t horrendous, just annoying. Sometimes I got a really searing pain in my nostrils too. I didn’t have any other side effects. So from my perspective, it would be worth a try.

Unfortunately, I was one of the ladies that it didn’t work for, so I wasn’t on it for the full length of time.

Good luck! Vicki x

[delia2 in reply to Yoshbosh]

Thanks, Yoshbosh. I’m sorry to hear it didn’t work for you. Are you on something else now?

[Yoshbosh in reply to delia2]

I’m on a Phase 1 clinical trial, but I’m not convinced it is working for me 😔 Well, either it’s not working, or it is working so well the cancer is dying off rapidly and causing lots of pain and discomfort... I’ll have some scans in the next 2-3 weeks to find out what is happening, but chemo could be back on the agenda very soon.

[delia2 in reply to Yoshbosh]

Good luck and thanks for your helpful information.

[Kal47]

Hi Delia,

If you have diverticulitis do not take Avastin

It killed my friend due to perforated bowel and it did the same to me!

I survived wearing a colostomy bag for a year until I had it reversed!

Also I had such horrible joint pain everywhere and they said it was not from the Avastin!

They lied to me because after I stopped Avastin I had no joint pain !

I hope this helps u make a decision!

I don’t know if it did anything for me!

Good luck to you!

Kathy

[delia2 in reply to Kal47]

Thanks this is very helpful. I do have some diverticulosis.

[Kal47 in reply to delia2]

Did they tell you Avastin can perforate your bowl

They never told me

It is the last of the 100 side effects that it can cause!

[Lindaura in reply to Kal47]

I was offered the same trial, but was going to decline Avastin because I had read about the possible bowel perforations and I was so sick already, I could not face any more risk. Fortunately , the docs decided against it anyway for another reason.

Usually the Taxol/carboplatin regime works wonders.

Hopefully you can have a PARP inhibitor later!

Best of luck,

Laura

PS: it is hard to say no when a trial is offered, but take a good look at the side effects first.

[delia2 in reply to Lindaura]

Thanks--that's what I'm thinking. It's so hard to decide when the consequences could be huge either way.

[Katmal-UK]

Hi Delia. I was on a trial for Avastin back in 2007/2008 and achieved a remission of nearly 4.5 years. good luck xx

[delia2 in reply to Katmal-UK]

That's great results!

[Katmal-UK in reply to delia2]

Thanks, Im now on my third trial, this time a parp inhibitor, currently my longest remission of just over 5 years. I do hope you make the decision thats right for you xx

[coksd]

Hi I was diagnosed last November with stage 4 ppc and had avastin with my frontline chemotherapy which started in December and ended in April I am still on avastin but my CA 125s are rising so I need to have a scan in 2 weeks but still booked in for another avastin so will have to see what the scan shows and what they will do, I asked the reg about the bowel and I am 36 with no other problems he said I should be fine so I hope he is right there are risks with every drug, I have no side effects at all with just avastin. Take Care Clare xx

[delia2 in reply to coksd]

Thanks so much, Clare. Best of luck with your scan!

[RonLitBer]

I am wondering why your physician would say that Avastin would only add 2 months to the time you would have without a recurrence. How does he/she know when and if you will reoccur? I realize that the likely scenario is high for recurrence especially for those diagnosed at a higher stage and for those who have already reoccured but to be able to nail it down to a 2 months seems kind of astonishing. As far as Avastin is concerned it can cause perforations and all the things already mentioned. Here is the Clearity Foundation site that gives a comparative breakdown of results from clinical trials using Avastin as one of the angiogenesis inhibitors.

clearityfoundation.org/for-...

[delia2 in reply to RonLitBer]

Thank you for this link!

[Janet235]

I thought I had replied but obviously didn't press reply.

Like Ron above I also query how the doctor can say black and white it will only add two months without recurrence.. everyone reacts differently to this drug, many get a wide range of symptoms, others like me got none. Many sail through all the treatments and get good remission but many have to stop after only a few treatments because the CA 125 is rising and scan shows recurrence ( also me))

Good link above again ...

the diverticulitis is a worry though - def one to discuss

janet x🌈

[delia2 in reply to Janet235]

Thanks. I did read the website. It sounds like Avastin produces the best results in people with ascites or sub-optimal debulking. As far as I know I don't fit those categories. I hope your situation improves and the CA 125 doesn't mean anything.

[Harper_23]

My mum had really serious side effects with Avastin, and now she cannot eat food, all her nutrition goes through her vein, and that’s for life, she also has bowel obstruction which is a side effect of avastin.

[delia2 in reply to Harper_23]

That's a terrible shame. Thanks for your input.

[LittleSan]

Hi Delia,

I was on Avastin for nearly three years for a recurrence to which I had had only a partial response to chemo. It kept me from disease progression all that time. Initially the side effects were minor; hoarse voice, excess mucous and fatigue. After two years I developed high blood pressure and terrible joint pain. The side effects have taken about six months to clear. For me it was definitely worth it but I would check about the diverticulitis though. My friend was denied it because of bowel issues.

I was told the goal of a Avastin was to add three months time to the usual recurrence time in order to give a better chance of not becoming platinum resistant. However a goal is likely to be different to a result. They were hoping to get a lot longer period of maintenance which happily it was for me.

Hope all goes well for you.

Sandra

Xxxx

[delia2 in reply to LittleSan]

Dear Sandra. I'm glad you got that long period progression free and that the side effects are starting to ease up for you. Thanks.

[eileen_alberti in reply to LittleSan]

HI LittleSan: I'm glad you mentioned your side effects, I've been having laryngitis for a while now, my gut feels like it has been shredded, I somehow gave myself a stomach bypass [stomach stuck in bowel loops], and the fatigue debilitating. I'm prone to GI bleed, and when I cough, I have to double over and hold the rest with my hands. It still hurts when I cough. I will be speaking to my ONC on Tues. I can't continue on as is. Thanks for your input. Eileen

[LittleSan in reply to eileen_alberti]

Ooh that sounds tough. Although it gets reported as being easy to tolerate and I was glad for the extra months it has given me, Avastin can be a bit of a beast! Let us know how you get on. Hope they can manage the side effects for you. X

[eileen_alberti in reply to LittleSan]

The final result of avastin: hospital stay while out of my mind due to high blood pressure psychosis which I have no recall whatsoever. It feels creepy. I also developed a dissection in my thoracic aorta which would need major surgery. My independence was threatened, and I'm not ready to play Bingo.

Merry Christmas to all, Eileen

[LittleSan in reply to eileen_alberti]

Oh my goodness Eileen, it doesn't get more serious than that! Wishing you a speedy recovery. Xx

[Hopefulgal1]

Just to add in some perspective too : my friend had avastin ( through her private med aid here) it worjked so well for her she believes it kept her alive for a few years and actually went to local court to appeal her case when led aid refused to keep giving it to her! She won. And is still here today. However if you have any bowl issues at all I understand all the above info would mean it would not be appropriate? X

[delia2 in reply to Hopefulgal1]

Good for your friend! I'm glad she's still here!

[tara108]

Hi Delia. I am wondering why they are offering this on 1st chemo and you don't say what stage cancer you have, which may make a difference to your decision. However, if it is your 1st chemo, I would advise to look up side effects of avastin on google and also you may wish to look at the USA Inspire site, ovarian cancer thread. There is a huge amount of information from women who have been on Avastin and all the side effects.

It ranges from some women who tolerate it quite well to some very strong, painful and sometimes dangerous side effects. The research shows that it does not necessarily prolong life, but can give longer remission time. It seems to work better with women who have genetic BRCA 1 or 2 rather than non genetic ovarian cancer.

Also really ask your oncologist about all the side effects and clinical trials showing how long it may increase a remission. I am in Australia (originally from UK) and cannot get Avastin or other parp inhibitors unless I pay $100,000 US a year! or there is a clinical trial or have recurred twice. Hope it helps. Hugs from Oz.

[Chele21]

Hi Delia

So many ladies can’t take Avastin, it’s all down to the individual, but I’m so glad that I was offered Avastin as after I was informed I was terminal I thought my life would be ending very soon. I have now been on it for 4 and half years, and as some ladies have said painful joints, painful runny nose etc but I’m alive, and I’m about to have my 75 th infusion so I’m so glad I was offered it.

But of course it yours and your doctors choice. All the best, Chele

[Crumble18 in reply to Chele21]

I gave had no side effects so I am happy to be in a teial

[delia2]

Thank you! I am stage 3B high grade serous and this will be my first treatment. I haven't had genetic testing yet. My surgery was 10 days ago. I think the US has approved Avastin to accompany primary chemo so it's covered. However I am feeling I should see how I respond to the standard chemo first rather than risking the Avastin side effects.

[Crumble18]

I am on the trial in the UK and have had no side effects at all. And my cancer has shrunk more than they thought. Although I am not sure if that is the Avistan. It is also helping others through the research.

[delia2 in reply to Crumble18]

That's great that you don't have bad side effects and it's working! xoxo

[Hilsuk]

Hi Delia,

I had avastin first line with my chemo for inoperable aggressive primary peritoneal cancer stage 3b/c and amazingly at the end of chemo I was completely cancer free. I am still in remission now over 5 years from diagnosis . Obviously I dont know how much avastin helped , but I have no regrets about having it ! . Yes I ached all over and my nose got sore , but it was much easier than taxol / carbo . I didnt have any bowel probs even though I have since been diagnosed with crohns disease

The joint side effects stopped after 12 months

Good luck ( you only get 18 treatments funded in the uk not 22 )

[delia2 in reply to Hilsuk]

I’m so happy to hear about your positive results. Thanks!

[Hilsuk in reply to delia2]

I was told that adding avastin to your chemo increases your progression free time by an average of 8 months ( not the 2 you were told ) , obviously with averages some will get less and some will get more

[delia2 in reply to Hilsuk]

I have since learned that for people with worse debulking or stage 4 Avastin gives much greater increases in time to recurrence and possibly lifespan. I chose not to have it firstline but would have it after recurrence or possibly for maintenance.

[Toni16]

Hi Delia,

I was put on avastin after my surgery along with post surgery chemo carbo/taxol. Had already done 12 round of chemo pre surgery to shrink tumour/cancer which was stage 3 when diagnosed. I continued on Avastin after chemo finished and they had told me all was good on my scans and that there was no residual and no recurrence. That was June 2017. I was on it until January of this year when I had a reoccurrence stage 4. I’ve now just finished chemo (cistoplatin/gemzar) and again they are happy with scans and day no evidence of disease and they want me to start on avastin again or I could go to royal marsden (I’m in Ireland) for a trial of something else.I’ve said yes to avastin but am anxious as couldn’t remember all the side effects until now when I read all the great messages from everyone. My Oncologists would like that the time between when (I say if) reoccurrence occurs is longer than 6 months so i can have either of the chemos that I had before again.

Sorry to be so long winded. I hope the information helps. Btw I’m not exactly sure if exact type of ovarian cancer I have but it’s not the genetic (brac1/2) type as had the test. Good luck with your decision and hope all goes well. Keep us posted.

All the best.

[delia2 in reply to Toni16]

Thanks, Toni and I hope your treatment is successful And without major side effects!

[Sherrym]

In UK.I don’t know but I did 5 chemos with Avastin, first line treatment.

My insurance did not cover any more. Side effects from chemo kinda cloaked the Avastin side effects I think, but i bet it is probably v effective alongside the carboplatin/pacitaxol (yikes-spell check) combo. So, at least have it during chemo. Hurl the almighty crap at it!!!! If u strong enough.

As far as maintenance, God only knows.

I wanted PARPS now! Immediately. Immunotherapy-now, immediately!

My geneticist (I am BRCA1) gently pointed out that the even more extreme measures shd be held in reserve.

Presently on re-purposed drug trial, doing fabulously.

Much luck with all yr choices.

[delia2 in reply to Sherrym]

Thank you. I am happy that you are doing great!

[eileen_alberti]

I'm on avastin since June. I'm glad you brought this up for discussion because it has been very informative to me. I will be talking to my ONC on Tues as I've had this gut ripping pain for at least 4 weeks now. I've already had 2 GI bleeds in the past so I'm touchy that way. I've been blaming my exhaustion on radiation but that was over in mid-Aug. I've always been sensitive to lots of drugs [don't know how or why people do street stuff] but that's me.

You should have at least a few weeks before you get any chemo as your surgery site needs to be more healed. I'm glad you're researching, not whatever-whenever. I told my doc right up front that I do better with more info. Somehow I didn't get any of what these ladies have talked about. You won't get any bad advice from this site. I'm in Fl, and haven't found anything that compares in the last 20 months. Many blessings Eileen

[delia2]

Blessings and best of luck to you too!

[MostlyHarmless]

Hi Delia

I'm stage 4 inoperable. I was supposed to have 6 cycles of carboplatin/paclitaxel but had to stop the taxol early due to side effects. Now on Avastin (or Beelzebub as my partner calls it). I get fatigue and joint pain but usually find this decreases if I do some gentle movement every half hour or so if I'm awake. I've been admitted to hospital twice since I started Avastin in April. Apparently the tumours are pressing on the bowel and affecting peristalsis. I saw the dietician at the Royal Marsden (UK) and I've adjusted my diet according to her recommendations which has helped a lot. I was told it adds an average of 5 months but this average includes those for whom it does not work within 4 sessions. All I can say is, it's more fun than chemo.

[delia2 in reply to MostlyHarmless]

Thank you for the advice and I hope it helps you for many months.

[delia2 in reply to MostlyHarmless]

I since learned that for stage 4 and non-optimally debulked people avastin makes much greater lenghts of time to recurrence so I hope it works for you!