AVASTIN (BEVAZIZAMAB)

[thomas62]

Good morning ladies. Can anybody give me information on Avastin - availability on NHS, cost if buying it privately, anybody's own experiences. Thanks. Gwen Xx

[Katmal-UK]

Hi Gwen I trialled Avastin in 2007/08. It gave me a remission of nearly 4.5 years. It was given every three weeks alongside standard chemo then every three weeks on it's own for the remainder of 12 months. I used to have the infusion on a Wednesday and back into full time work the next day. Most significant side effects was muscle and joint pain (controlled by over the counter painkillers,) and what can only be described as a 'snotty nose'. Had to use probably half a box of tissues most mornings to clear my nose and often found I had bloody tissues. Had a few nose bleeds too over the time. After I completed treatment it took about 6 months for the side effects to subside. Having said all that I was working full time s as you can see it's a very manageable drug. Also, it did raise my BP for which I was given medication but that was stopped once I had finished the course and my BP stabilised again. I'm not sure of availability on the NHS and I do know that the cost per 3 weekly dose when I was on it was c£2,500 . I think it's fallen slightly now though. Kathy xx

[thomas62 in reply to Katmal-UK]

Wow, you did really well on Avastin Kathy. Thanks for the information you have given me. Yes I believe the price has come down but don't know what it is exactly. I would have to fund it privately though. A "snotty nose" seems quite common from old messages I've picked up on and a raised BP. Do you know of any contra-indications which would prevent a patient accessing Avastin? Best wishes. Gwen Xx

[Katmal-UK in reply to thomas62]

Hi Gwen. Yes I did well on it, doing even better on the trial for Olaparib (currently 6 years NED and been on it for 5 years 9 months). I believe Avastin may not be suitable for patients with heart problems probably because of the raised BP it tends to cause. Not sure of any others. Might be worth googling that question. Kathy xx

[thomas62 in reply to Katmal-UK]

Hi again Kathy, Are you low or high grade? My memory is rubbish at moment. One problem I don't have is a heart issue. If you are high grade, are you BRACA and, if so, is that why you are eligible for Olaparib trial? Gwen Xx

[Katmal-UK in reply to thomas62]

Hi Gwen I am High Grade BRAC2 and I met the criteria for the SOLO2 Olaparib trial as I had just completed chemo for a second recurrence. To be honest I think I was right place right time. My Onc at Clatterbridge was in the process of putting me forward for another trial but it wasn't starting in time and having been on the trial for Avastin and also one after my first recurrence for Cedranib she was keen to get me onto a third trial and contacted the Christies. I started the trial in January 2014 and have obviously been on it every since. Currently still NED (as of August 2013) and CA125 holding at below 3. I have been EXTREMELY lucky and fully appreciate how lucky I have been. I am also taking part (only having additional blood tests) to help researchers understand why it is I am having such a good response xx Kathy xx

[thomas62 in reply to Katmal-UK]

Brilliant Kathy and I hope you continue to remain NED. Best wishes.Gwen Xx

[Dollie22 in reply to Katmal-UK]

Hi Kathy,

Wow, you are doing brilliant ! Long may it continue. That parp inhibitor sounds great. Can I ask if you’ve experienced any fluctuations in your CA125 .. you mentioned that it’s below 3..

best wishes,

D

[Katmal-UK in reply to Dollie22]

Thanks D, as Ive said I have been extremely lucky. No fluctuation in CA125. It was 7 when I started on the parp trial and after about 5-6 months it dropped to 'below 3' where it has remained. CA125 is a very good indicator for me. Its never risen particularly high, being 389 on diagnosis and only rose to over 600 before my op and first round of chemo. On my recurrence it rose to 65. Hope you are doing ok xx Kathy xx

[Dollie22 in reply to Katmal-UK]

Thanks Kathy,

I’m delighted that you’re doing so well. I’m doing ok.. on avastin as maintenance, after recurrence ... kind regards, D

[Dollie22 in reply to Dollie22]

Just wondering if you get a reading below 3 ... ie , 2 and 1.

[Katmal-UK in reply to Dollie22]

Hi Dollie. No, always just told its below 3. I take that to be just below. I once had a reading of 3 and panicked lol that it was one way up but my nurse said its prob just the way it was read by different lab tech on that occasion. X

[Dollie22 in reply to Katmal-UK]

Thanks Kathy,

You’re doing great ..great results...the serial blood testing is very stressful .. Parps sound like great drugs. Hopefully they’ll prove useful for non BRCA patients too.

D

[Katmal-UK in reply to Dollie22]

Hopefully they will. I try not to get too stressed in between, its become my norm to have a check up every 12 weeks and a scan every 24.

[Artgreen]

I have just signed a government petition to get Avastin available on the NHS. You can sign by clicking on petition.parliament.uk/petitions/272007 Only 3,680 signatures so far so a lot more needed.

X

[thomas62 in reply to Artgreen]

Hi Artgreen, Actually, I had just picked up your name from a previous response you made in the recent past. This said you were the only low grade lady actively raising money for this disease. If so, a very very big thank you. I will sign your petition. Best wishes. Gwen Xx

[Artgreen in reply to thomas62]

Bless you! It isn't my petition just one I signed. [Fundraising content removed by moderator]

[thomas62 in reply to Artgreen]

Hi Artgreen, Will do my best to share your Justgiving page. Good luck and take care. Gwen Xx

[Artgreen in reply to thomas62]

Thank you very much, I really appreciate this! X

[Spirit22 in reply to Artgreen]

Hi Artgreen just donated to your page. Best Wishes Lesley (another low grader ) Xx

[thomas62 in reply to Spirit22]

Hi Spirit22, Thanks for your donation. Gwen Xx

[Artgreen in reply to Spirit22]

Thank you so much ! I am very grateful. X

[thomas62 in reply to Artgreen]

Hi Artgreen, Can you tell me how to get on your just giving page. I'm a beginner at this!! Gwen Xx

[Artgreen in reply to thomas62]

Ahh how kind! I’m not allowed to raise funds on this site but if I can figure out how to message you directly I will do so .

Thank you so much x

[thomas62 in reply to Artgreen]

Hi Artgreen It comes up Rotary Club- is this correct? Gwen

[Artgreen in reply to thomas62]

Oh no ! It’s under my name ! I’ll pm you x

[thomas62 in reply to Artgreen]

Thanks Artgreen. Gwen Xx

[Artgreen in reply to thomas62]

Thank you Gwen! Xxx

[thomas62 in reply to Artgreen]

Got it Artgreen. Gwen Xx

[Artgreen in reply to thomas62]

Bless you!! Xxx

[Spirit22 in reply to Artgreen]

Just signed Xx

[Spirit22 in reply to Spirit22]

the government petition

[Purple-iris]

Hi Gwen

I had Avastin for a year (18 cycles) following firstline chemo ( as was stage 4)

Diagnosed June 2016 been NED since finishing firstline. Count my blessings everyday !

Not much to add to Kathy’s info apart from I suffered more from throat congestion, husky voice. Lots of aches when first got up but ok if kept mobile.

I had the start of Avastin delayed until chemo no 6 as they were concerned about issues with my bowels, they won’t normally recommend if you have tumour or bowel issues due to complications of causing bowel perforation ( which is obviously very serious)

I had problems with my knee initially, which was a weakness before, I was told if you have any inflammation and suffer from arthritis it can make this worse.

I will never know if it’s due to the Avastin that I’ve been Ned so far but wouldn’t hesitate to have it again. ( I’m high grade )

Feel very fortunate to have had it on the nhs and feel it should be more widely funded.

Love and best wishes Kim x

[Dollie22 in reply to Purple-iris]

Hi Kim,

Delighted that you’re doing so well. I’m currently on avastin for a recurrence. Can I ask if you had any fluctuations in your CA125 since front line treatment ? D

[Purple-iris in reply to Dollie22]

Hi

To be honest my CA125 has been pretty steady. Was 3880 when diagnosed but came down significantly with chemo and was down to 10 after first Avastin and been 8 since finishing Avastin in January 2018. Feel very fortunate to have responded so well after initially being told I was stage 4 and inoperable.

I hope the Avastin is successful and gets you back to remission or stable disease and doesn’t cause too many side effects

Best wishes K x

[Dollie22 in reply to Purple-iris]

Well done .. thanks for reply . I wish you all the very best and continued good health , D

[thomas62]

Hi Kim, Thanks for replying. So pleased for you remaining NED. I have had a bowel resection nearly 2 years ago. I didn't realise that it could be delayed like yours was to chemo no.6 - was this your last chem? Have you any idea of current cost if self-funding? Best wishes. Gwen Xx

[Purple-iris in reply to thomas62]

Hi

Yes, no 6 was my last chemo when the Avastin was added, Sorry I don't know how much it now costs to self fund. I think some hospitals are more flexible than others. When I checked at Guys a couple of years ago I was told I wouldn’t be able to just self fund the drug but would also have to move my treatment to private! But when I went for a second opinion to The Christie ( to explore whether I should stay on Avastin longer than a year ) they were able to arrange for just the Avastin to be self funded ( think at the time around £2500 per infusion)

Best wishes with your future treatment

Love Kim x

[thomas62 in reply to Purple-iris]

Hi Kim, Thanks for your feedback - much appreciated. I am under the Christie. It is so expensive though. It's cruel that NICE won't fund it. Gwen Xx

[Purple-iris in reply to thomas62]

Totally agree, should be more affordable x

[thomas62 in reply to Purple-iris]

Hi again Kim, I'm a bit confused! Are you saying you didn't have to go private for the Avastin but had to pay for the treatment? Gwen Xx

[Purple-iris in reply to thomas62]

I didn’t go private as I only had Avastin for a year (18 cycles ) after my firstline of chemo and that was available on NHS as I was stage 4 .

The Christie agreed with Guys that I only needed it for a year and therefore I didn’t continue. They suggested that if I had a recurrence it might be worth self funding it following more chemo as it wasn’t funded for recurrence. Not sure what the current protocols are.

X

[thomas62 in reply to Purple-iris]

Thanks Kim. Gwen Xx

[Gemimablackvelvet in reply to thomas62]

Hi Gwen. I was under the impression Avastin was now available on the NHS but when I mentioned it to my oncologist 2 weeks ago he intimated it hasn't been proven enough and mentioned it is usually given to ladies much younger than me. I'm 75 and just begun chemo for my recurrence stage 3c. He asked me if I could afford £4.000 per month. I'd have to sell the house. I must admit I was confused.

I have just signed on Parliament UK Petitions. Up to over 5.000 signatures now -10.000 to get heard in Parliament.

Angela x

[thomas62 in reply to Gemimablackvelvet]

Hi Geminablackvelvet, I would question your onc. as to age restriction he mentions re. Avastin - is it a medical reason, if so, why is it or is it an ageism thing. I am 70 years old and would feel terribly upset if they said I was too old for Avastin when I get to 75. Also whilst Avastin is expensive privately certainly other ladies haven't put a figure of £4000. per month on it. I would ask further questions of your onc. I have also signed the petition . Best wishes. Gwen Xx

[Gemimablackvelvet in reply to thomas62]

Hi Thomas62,

I think the oncologist may have meant Avastin had only been proven successful on younger patients and not enough proof that its cost effective. That's my own interpretation anyway. However, then asking me if I could afford £4,000 per month confused me. Why would that be a viable option? Does it work or doesn't it. I haven't had the BRCA test. Should have been tomorrow but cancelled due staff illness. I have been in touch with my MP, who's mother has been cured of OC as it was caught at an early stage. He's promised to get back to me. I've also asked him about Plasma Jet surgery.

Angela xx

[thomas62 in reply to Gemimablackvelvet]

IHi Angela, Thanks for your reply. I don't know one way or the other whether Avastin's success is on younger patients. Certainly a lot of low grade ladies are younger when diagnosed. I wasn't suggesting you could or could not afford Avastin at £4000, a month Angela. What I meant was that I thought that the price of it had come down to below £4000 ,f you were having to pay privately for it. Also a member in a post a few days ago suggested the dosage(and therefore the price of Avastin) is dependent upon your weight. Please get back to us when you have spoken to your MP and also his comments about Plasma Jet. Best wishes. Gwen Xx

[Gemimablackvelvet in reply to thomas62]

Hi Thomas62,

I will certainly get back to you all as soon as I hear from my MP.

Thank you for your reply

Kind Regards,

Angela x

[Lyndy]

Hello... I had Avastin after first line in 2016 . My oncologist applied to the cancer drugs fund because it wasn’t available generally at the time. I thought that I might fund it again myself if I had recurrence... the cost I worked out as just under £2500 per cycle I think. It is expensive.... and to this day I cannot say that I am sure that it did anything. However I was stage 4 and have not had any other treatment in 4 years... so maybe I am being ungrateful! xx

[thomas62]

Hi Lyndy, Personally I think you've had a very good result! Lyndy when you state per cycle- how many treatments would this cover, one or more? Best wishes. Gwen Xx

[Iwillbeatit]

Hi Gwen

I am a uk nhs patient half way thru avastin treatment. It is not approved by NICE on the grounds it does not extend life. My consultant got funding thru a cancer drug fund that nhs consultants can call on and I was accepted as perfect candidate for it. You get a maximum of 18 treatments. It makes your joints ache but is doing its job the cancer has reduced in my cardiophrenic nodes and nothing new has grown and all the rest of the cancer on liver spleen omentum etc is stable. You do not need to take steroids or anti sickness drugs and it does not pull you down like chemo a better experience. Happy to answer any other questions. Good luck

[thomas62 in reply to Iwillbeatit]

Hi Iwillbeatit, Thanks for this info. You are obviously doing well - keep it up. Can I ask what type and stage you're at! Best wishes. Gwen Xx

[Iwillbeatit in reply to thomas62]

Hi Gwen diagnosed last July ovarian cancer stage 4 b. Had 8 - chemo carboplatin and paclitaxol hoped to then have surgery but docs deemed inoperable as on my liver and spleen its also on peritoneal omentum tubes and ovaries just had treatment 11 /18 every three weeks like chemo but not so debilitating. No new cancer has grown and what is there has not grown so doing its job. Ca125 14 now. So fingers crossed. Happy to help good luck.

[Iwillbeatit in reply to Iwillbeatit]

Seeing other comments I had peripheral neuropathy will t h chemo but not with avastin acupuncture cleared up chemo neuropathy after six mon t he.

[Iwillbeatit in reply to thomas62]

Sorry I am high grade epithelial serious.

[Iwillbeatit in reply to Iwillbeatit]

Mine was funded thru national. Cancer drug fund

[thomas62 in reply to Iwillbeatit]

Hi Iwillbeatit, Thanks so much for all your replies. Much appreciated. Gwen Xx

[Montydon]

Hi Gwen

I’m currently on 3 weekly Avastin having had first line chemo 6 cycles and will be until December. Generally well tolerated but have had the runny nose and congestion, increased my pre existing blood pressure meds and have had intermittent tingling/pins and needles in hands (peripheral neuropathy ) another side effect although fleeting.

I was eligible for it under National Cancer Drugs fund and being grade 4. Recent scan shows no evidence of active cancer so I am very satisfied! I’m also low grade.

Wish you luck and all the best

Sally

[thomas62 in reply to Montydon]

Hi Sally, Wow - Brilliant result for you. I'm thinking there are more ladies on Avastin than what I thought. Do you know if you have to be grade 4 to be able to get Avastin through the Cancer Drugs Fund.? Best wishes. Gwen Xx

[Montydon in reply to thomas62]

Gwen

You can see the exact criteria on the National Cancer Drug website and it includes grade 3 or 4 in specific circumstances

Good luck

Sally

[Flower2011]

I am Privately funding avastin, it costs £2016 for one infusion every 3 weeks, I have had 10 so far, 6 along with chemo and 4 just on its own, with another 8 to go. No real side effects, bit achy and occasional runny nose. I have them at home through HCA health care at home, I’m under Christie Manchester. They come to my house on a Friday to do my bloods and a courier picks them up to take to Christie’s then they come back Monday to do the infusion. Works like a dream, so relaxing. Takes about 30/40 mins to do bloods an about an hour to do the infusion from start to finish, they do obs and flush before and after the 30 min avastin infusion. Hope that helps.

[thomas62]

Hi Flower2011, Thanks for replying. Wow,I knew Avastin would be expensive but £2016. is going some! You have a good system going there as you say - easy peasy! Do you know how you're doing on the treatment? I do hope it's doinga brill job for you. Best wishes. Gwen Xx

[Flower2011 in reply to thomas62]

Yes I am a low grader, forgot to say that, my ca125 was never high, 37 at diagnosis even though it was ovary, lining, spots on my bowel and part on my liver. Had major debulking December and started chemo 6 cycles carbo/paxol/avastin February, after 3 cycles my ca125 was 6, huge relief and on my last 2 avastin cycles my ca125 is 4, so over the moon. So I would say I am doing great. I am currently in Tenerife with my friend (my second Tenerife trip in as many months) having a lovely relaxing holiday.

I also try to stick to a vegan whole foods diet, not that easy abroad, so vegetarian at least, and no sugar, no alcohol, nothing processed as much as I can. I take fresh garlic turmeric and ginger every day, (capsules while I’m away) and have green cold pressed juices at least once a day.

Lots of green tea too.

[thomas62 in reply to Flower2011]

Enjoy your holiday - keep them up.

[Natsmb]

I'm from America so I'm not sure this helps but Avastin is produced by a company called Genentech. I was able to call Genentech and because I made under a certain amount a year I was eligible for what would they called a co-pays credit card that the company set up for me directly when I think I called her looked online at some point. It covered up to $2300 of MY responsibility of the cost of the drug. The hospital has to run the co-pay credit card (which is really just a piece of paper with a barcode on it) just as they would a credit card and whatever your personal cost of that medicine is, it will cover a percentage of that for each transfusion. It lasts a year and then you have to reapply. Now I don't know if that works for the UK. I don't know why it wouldn't but it doesn't hurt to call up the company and to check I guess.

if I'm wrong with somebody let me know because it would be interesting to know if this only works from certain countries.

[thomas62 in reply to Natsmb]

Hi Natsmb I'm to glad you are able to access Avastin through your social care system. Here in GB ladies can only get it in certain circumstances but not through social care or by paying privately for it. Best wishes. Gwen Xx

[jenny8c]

I have just had 4 treatments at £2016 each. I think the cost depends a bit on your weight so I regretted putting on over a stone recently!!!! Luckily I had little or no side effects just a slightly runny nose and a few aches and pains but nothing to bother me, in fact I felt very well on it until recently when we found it really wasn't doing anything to stop my cancer or even hold it at bay so I have now come off it. All my associated treatments - blood tests and CT scans were NHS.

Good luck to you if you decide to go ahead as some of the ladies on here have much better results than me and I hope you have the same. xxx

[Flower2011 in reply to jenny8c]

I pay £2016 and I am 9.5 stone, I’ve lost over a stone since I started, should I ask for a discount 😉

[jenny8c in reply to Flower2011]

You are nearly 2 stone lighter than me so I think there would be no harm in asking - good luck. xxx

[thomas62 in reply to Flower2011]

Hi qgain Flower2011, If you get a discount let us all know. I am 8 stone currently. Gwen Xx

[Flower2011 in reply to thomas62]

I will do

[thomas62]

Hi jenny8c, So sorry to hear Avastin hasn't helped you. It's a lottery really isn't it. We need more research and specific answers and treatments. When when when!! I hope you might be on a different treatment that is now working for you. Best wishes. Gwen Xx

[jenny8c in reply to thomas62]

Bless you - yes there are so many types of OC and each of us is different so we have to keep trying different treatments in the hope of finding one that suits us. Good luck if you try Avastin - it seems to have worked very well with some ladies xxx

[thomas62 in reply to jenny8c]

Hi jenny8c, Yes it seems luck of the draw - so many options in so many ways and not just with available drugs!! I would hope that I could get Avastin even if it's not at this time but I'm so pleased to hear when it works for other of our ladies.

Best wishes. Gwen Xx

[carolleigh]

I have been taking Avastin for a year and five months along with Carbo Gemzar every two weeks. I just got off the Carbo Gemzar a week ago. After the first five months I got off carbo gemzar and cancer came back...to a different place. (I had stayed on Avastin, so the cancer came back with Avastin) I went back on Carbo Gemzar (still on Avastin) and the cancer left pretty quickly. Then I stayed on it all for another ten months more or so. Now my doc will keep me on Avastin. Not sure how often or for how long.

(My cancer was uterine, stage 4. Diagnosed in early 2016. I have been NED for about 10 months, but that's on chemo/avastin so...whatever that means.)

It seems like my (medicare US) health insurance pays for it, so I am confused. I have some kind of system where the additional insurance company pays the remainder of anything covered by medicare.

I don't know what causes my side effects, but ultimately I started having joint problems after a year or so of Avastin. I always thought if was the Avastin... but it was just a hunch. The other side effect is some shortness of breath. I have had lots of tests and the doctors say there is nothing wrong with my breathing that they can find.

Now my muscles feel a little weak. I exercise almost every day- Nia dancing-and swim once a week, and weight training and stationary biking (for joints) every day., thinking that will help. I take almost every possible joint supplement.

My blood pressure runs low so a few more points doesn't seem to matter. I get my urine tested for extra protein and so far so good.

I wish there was another thing to take besides Avastin so I could test to see if that's what is bothering me. Also I need a tooth extraction and the doc says it shouldn't happen with Avastin within a month, so I have to skip one treatment.

While I want to stop Avastin to see if it's causing side effects, I am also afraid to stop, and even miss one treatment.

Good luck! Thanks for sharing the question. I want to know more about folks' experiences.

[thomas62]

Hi Carolleigh Thanks so much for your story re. your treatment and Avastin. I understand what you mean - we take the meds prescribed by the medics, put up with the side effects, do as we're told by them and hope they know what they're doing!! What else have we go though! We hope the medics are doing their best and we have to do our best as well! I hope you can sort your tooth out at some point before it becomes a big problem and keep up with the exercise. Best wishes. Gwen Xx