introduction of avastin

[19521965]

hi everyone, I have not posted for a while . I am three weeks post op and doing fairly well considering the amount of surgery I had. I even had my appendix as well as a full hysterectomy. Although I am happy with my recovery so far, come the early evening I am so exhausted and struggle to keep awake before going to bed at nine.

I thought I had three more chemo to go and then I was finished. My consultant wants to start giving me avastin at the same time as my second chemo and then every three weeks for twelve months. I was a bit shocked as not looked that far ahead. Has anyone else had this drug given with chemo and any side effects after.

After reading the imformation I was given, it does make sense as any microscopic cancer left after surgery won't get the chance to find a new blood supply where it can start to multiply again.

I would appreciate any feedback on this. thanking everyone on this site xx

[Gaile]

Hello , I have had avastin with carbo:taxol and two Chemo with pre op as avastin prevents healing . I didn't find any difference to how u felt post chemo with : without it . I'm the same post op and going to oncologist this pm . They have mentioned continuing avastin for up to 18 mths . I hoping that won't be neccasay but if it stops a recurrence will go for it . Some ladies have reported having avastin on it own had less side effects . So here's hoping . Good luck

[19521965 in reply to Gaile]

thank you, that sounds positive x

[harpist_UK]

There are several posts about Avastin on here if you do a search. I think if you are given the chance of it you take it. I had it with my last 3 carboplatin-taxol chemos and now have it just on its own - no problems with it apart from a rise in blood pressure, which is common on this drug. I think it makes sense to use all the weapons you can against OC - not everyone qualifies for Avastin and it is not available everywhere, so you are fortunate to be offered it. I am currently 'no visible disease' so it's doing its stuff.

[Katmal-UK]

Hi I took part in the Avastin trial in 2008. I worked full time once I finished standard chemo and was on Avastin alone, taking a day off every three weeks for a year whilst I attended the hospital (then back to work the next day). No major side effect. Mostly having to go through half a box of tissues each day to clear my nose/nose bleed. A small rise in BP, few aches and pains but all in all well tolerated and I did have a 4.5 year remission. I hope your recovery goes well. Kathy xxx

[GBIRVMIC]

Hello I've just finished 6 cycles of chemo with Avastin and now having another 12 cycles of Avastin on its own. Side effects for me were runny nose and a croaky voice with a few aches. It isn't available to everyone which I think is appalling and take the opportunity and say yes! Keep us all posted and good luck Love Michelle x

[19521965]

thanks for all the replies x

[couls in reply to 19521965]

Hi I was diagnosed in February 2014 with pcp stage 3c. Had the usual 3 chemos debulking and 3 more chemos. I was lucky and had 20 months remission. But my tumour markers started to rise March of this year. Back on chemo again last week. The NHS won't fund avastin apparently for 2nd line chemo so I'm having to fund it myself. At a cost of 3000 pound every 3 weeks. Both my children are trying to raise money by doing the Yorkshire 3 peaks. I've also been in contact with my MP asking her why it's still funded in Scotland but not here. If possible would people reply saying what part of the country they are in and if they are receiving avastin on 2nd line chemo. As I can't believe I have worked all my life to have to sell my home to try and live that bit longer. So my advice would be if you are offered avastin take it. Sorry for rambling. Lol. X

[trix70 in reply to couls]

Hi, I am in the south west but have never been offered it.

I now fighting my second reoccurrance and nothing is working, the chemo I have been offered only works 10% but I am going to London shortly for a second opinion and I can ask about gaining it privately. So it was interesting to see who much it costs.

The drug I have been offered is cylophosamide, this is given in USA with Avastin

Yes may have to sell up but where I am holds no real memories, we moved in the Sept, hubby was terminally ill the whole time and he passed away in January. I'm sure he would agree, use the money.

Move to Scotland ?

[Dollysmum in reply to trix70]

I would in a heartbeat. xx

[trix70 in reply to couls]

Hi, can I ask what made you ask to take Avastn, did your oncolgist mention it ? I'm sure it would have helped me over the last year to stop the tumours n the liver. X

[couls in reply to trix70]

Hi, no it was when I was first diagnosed and having chemo. I was sat next to a lady who was just getting avastin she told me she had it every 3 weeks and the side effects were nothing like the chemo. It was her who told me it stopped the blood supply getting to the tumours. At that time I said to my daughter we need to remember the name incase I ever needed it. So I asked the consultant about it and it was him who told me it was no longer funded. I did know that as I remember seeing on the news last year that the cancer drug fund had taken it off the list. I am still going to keep on at my MP to see if it can be funded. Her office did tell me on the 1st July the cancer drug fund are putting out a statement of what they will fund again. That's why when I read on this forum most people seem to have at least been offered it. That is why I asked what part of the country people lived in. Just so I had more information to fight my corner. But as you said it would be cheaper for me to move to Scotland. Have you been told there is no funding for avastin where you are ? Val. X

[trix70 in reply to couls]

Hi, thanks for replying. I have never been offered it but had nearly two years remission each time with chemo. But this last year only second reoccurrance, whilst on carbo/taxol then taxol which only partially worked it has never been mentioned and I never thought to ask. It's only now that they are saying nothing left and that I am in my last year of life, I started researching about cylophosamide which they have offered, only works 10%, I read that in the USA they use Avastin with the Cylophosamide

So I am asking my nurse tomorrow if I could pay for it.

I am in Weston Super Mare which is 20 miles south of Bristol but the oncologists come down from Bristol.

Also waiting to go to London Oncology Clnic

I can't see the drugs fund putting it back on again though, more likely taking more out.

Thanks Trix

[couls in reply to trix70]

Hi, when you get to London ask about any trials they are doing. Keep asking don't just accept what they say. Go with your information of the drugs you have researched and ask about avastin for you and why it was never offered. Sorry if I'm going on it just makes me so upset that we have to do this. As my daughter keeps telling me we never give up we keep fighting there are always trials going on. Take care. Val. X

[trix70 in reply to couls]

Thank you I will it's just taking so long to organise and I am now getting pain on my right side, loads of belching and sweating at night, also had some fatigue days so I need to get on treatment ASAP. Waiting on phone calls today again.

[Biscuitqueen in reply to couls]

I'm pretty sure there is an Avastin trial in Cheltenham called ICON8. I was looking at that as they weren't ready to fund Avastin for my Mum.

[Teenie in reply to couls]

Hi Val - I live in Suffolk and will starting avastin with my last two lots of post op chemo and 12 more on its own.

Tina x

[19521965 in reply to trix70]

Hi trix, I didnt ask to go on avastin, it was planned from the beginning by my consultant.

I had forgotten half of what was said at the beginning I just wanted to get started on something.

Sorry I cant be more help.

Take care

Linda x

[trix70 in reply to 19521965]

Thanks Linda, as its your first line I guess that's why it is still being offered. Of course my first line was back in 2010. All the best. Trix x

[joebartle in reply to couls]

hi my name is Irene I have oc.stage 4c I had six sessions of chemo,fallowed by 18 sessions of avastin,iwent to the second line of chemo, and had a reaction,they are trying taxol they stopped the carboplatin,i have been attending Christie,s Manchester.

[Chamber]

Hi

I have Ppc diagnosed may 2015. I had 3 chemo,debulking, followed by 3 chemo with avastin given with last 2 chemos

I'm on about number 13 now with 5 more avastin left to go

It's certainly much kinder than chemo. I've had sinus problems and aching joints, but not too bad really.

Hope you get on ok

Judy xx

[19521965 in reply to Chamber]

feeling more positive after all the comments I have received. Good luck to everyone xx Linda

[Millie-c]

Hi Linda,

Thanks for posting. I'm similar to you. 5 weeks post op and after 4 carbo taxol chemos.

The oncologist has suggested a dose of just carbo to start with then two carbo taxol with avastin, to continue until 18 sessions.

Most people say if you get the chance take it so I had no hesitation in accepting it.

The runny nose seams to be the most popular side effect so I'm thinking I can live with that although it may be irritating.

I wish you well with recovery,

Mandy, xx

[Hertsmum]

I am on avastin with taxol now for 3rd line and the plan is to carry on with avastin after the taxol. The good thing with avastin is it isn't a traditional chemo but a targeted drug to stop the blood vessels of tumours growing, so it doesn't cause such havoc with the bloods, tiredness etc. And after my first two were given more slowly to check no reaction, it now only takes half an hour for the infusion. I'm just hoping and praying it works!! Good luck.

Madeline xx

[couls in reply to Hertsmum]

Hi could you tell me what part of the country you are in. As I am trying to get avastin only to be told it's not funded for 2 nd line chemo. Were you offered it for your 2nd line ? Thanks Val. X

[Hertsmum in reply to couls]

Hi Val, I know I am lucky to be able to get avastin as have private healthcare through hubby's job. I think it's appalling it's no longer offered on the nhs for 2nd line. Madeline X

[Lynn_B]

I live in Canada and Avastin is not covered. I have just finished reoccurance 3 months ago.Taxol and Palaxol. My scan results came back stable. No changes since last scans.Feeling releaved for now.Next appt. 3 months,Next scan 6 months unless I feel symtoms.Staying as possible as I can.Walk 5 miles a day.Growing hair again.Yes!

Lynn💙

[Lynn_B in reply to Lynn_B]

I meant carbo and Taxol.Lynn also first diagnosed in 2014.Hoping Avastin will be covered in Canada soon.I know I will need treatment again as I am treatable ,not curable.

[couls in reply to Lynn_B]

Hi, that's good news that your stable again. I'm the same treatable not curable. I can't believe that we have to fight to get drugs that will prolong our lives it's hard enough fighting the disease, trying to be normal on the outside but screaming on the inside. Take care. Val. X

[Galashiels]

Hi Ladies I live on a small island in the Outer Hebrides but I have to travel to Glasgow by air to get treatment. After the usual Carbo/Taxol and surgery I am now on second line and have not been offered Avastin but I was offered Tamoxifen which I've been on for 4 weeks now, and I can honestly say I've never felt better. Initially I did have very achy joints and could not get comfortable unless I was in bed so I started to take it last thing at night and all ache's and pains have gone! I'm due a scan 1st week in August to see whether it's working or not but I feel so well I can't see how it can't be.....fingers crossed. x.