Avastin

[Be-Positive]

I wanted to get everyones feedback around Avastin, has anyone been on Avastin for more than 1 year and are there benefits in doing this?

My mum is on Avastin for 1 year, however after that it is no longer funded. We are thinking about remortgaging the house so that we can pull money out and fund it for a further 1-2 years. This is obviously a huge step as my sister and I will be taking over the house in our names so that we can keep the house and draw money out.

I want to understand if this is likely to increase her survival rate if she was to continue for a longer period?

Mum is stage 4 Ovarian Cancer but currently has NED (No Evidence of Disease) and hoping that this will help add years onto her life. Is it likely that she could be on the Avastin and the cancer to come back or is the Avastin suppose to keep it away whilst she is on it?

Another thing I have been reading heavily in is Cannibis Oil and the proven results from taking this? Anyone have any thoughts around this? I know it hasn't been released legally but there seem to be a huge amount of positive things being said about this helping kill Cancer Cells? I also know someone who has their mum on this with Breast Cancer and they have not had to operate when they thought they would have to... It is hard to know if this is contributing to the results in treatment tho!

Thanks for your feedback xxx

[Katmal-UK]

Hi I don't know anything about Cannibis oil so cant comment on that. I was originally on the trial for Avastin back in 2008 when I had Avastin every three weeks for a year. I subsequently had a remission of nearly 4.5 years. Has your mums oncologist suggested that staying on Avastin would continue to keep the cancer from recurring? I would have thought that he/she is the person to ask. I am stage 3. Following 2 recurrences, 2 chemos and 2 further trials I am currently NED, have been for 26 months and still on another trial drug.

Don't know if that helps or not but I wish your mum all the very best. I'd also like to add that she's obviously a very lucky to have such devoted children (as am I )

x

[Be-Positive in reply to Katmal-UK]

Hi Katmal,

We haven't ask the onc yet, I wanted to gather as much research as possible so I could go in with a case if others have proven results from being on it for longer, although I am hoping if they feel it is beneficial they may fund it rather than us so don't want to suggest that as an option straight away. I will defo find out their thoughts when we are next there in 2 weeks time. Mum is meant to be on it for a year but wondered why they stop it at a year. I thought it was because it is so expensive and know not everyone gets it.

That's encouraging that you've had such good results over 6 years on

Its the bloody reoccurances I am trying to avoid her getting if I can prolong that as long as possible.

The cannabis oil does have risks I think..I have read so many different things online although the majority are really positive! Not sure tho I wouldnt want to take that into my own hands I dont think.

Thanks for getting back to me I hope you stay NED for as long possible xxxxx

[Hidden]

HI Bepositive, I suppose that is a decision you and your family need to make. I am on Avastin coming up to two years and likely to finish soon. It definitely helped to keep the OC at bay. I think we all react differently, it works better for some than others. So perhaps, talk to your Mums oncologist and see what he or she recommends. Being NED at the moment would indicate that it is a good time to take a rest. It also depends on whether her bp has increased or her urine has protein, these are good indicators to stop for a bit. I live in Ireland and up to now, Avastin has been available for up to two years of treatment. It is a big decision but hopefully you can gleam more information from the Oncologist to help you both make a decision

[Lily-Anne]

It's supposed to cost £21k per year in the UK which I don't think is a huge amount. My cousin needs a drug dropped off the list for bone marrow cancer, which costs £8k a month here and £200 a month in Canada. The drug companies make a huge amount of money.

This may help avastin.com/patient/support...

LA

[Julie40]

My knowledge of cannabis oil is limited but I did have a friend who was talking it for breast cancer but sadly she passes away. I know of another case who was also taking it and same thing happened. There are so many mixed views on this and I really don't know if I would consider it for myself but I think it's like our cancer it is all individual cases and we don't know what works for us as it may work for some. Sorry it's not particularly helpful but thought I would share my limited knowledge of it.

Hope your mum can get Continued support with the Avastin. I was told it was £30k a year if you were to go down the commercial option. Sad that it comes to this but keep pushing as it may be funded for another year for her xo

[LesleyGreengran]

I was on avastin for 18 months. I argued and argued with the oncology team to keep on it at the end of a year and they eventually agreed., At the last appointment before I continued the doctor muttered something about she hoped they would not get fined. I'd read all the guidelines online and thought it would be covered for second line by the Cancer Fund but of course what's funded has changed now. The docs also don't like it because of the potential side effects but surely it's up to us to decide whether to take the risk? The cancer came back anyway. I have no idea whether the avastin helped or not. There's just no way of knowing for individual women. I had 14 months with no disease progression, then the lumps started to grow again while I was still on avastin though slowly, and the avastin was stopped. That was in May I'm starting chemo on November 25, after a CT scan, which will be 20 months from the end of second line chemo. So it's still continued to grow slowly. I wouldn't have paid for more and certainly not remortgaged but my partner's likely to outlive me by many years (I haven't told her that's why!) - everyone's situation is different and you can only decide for yourselves, but there's no sure way, yet, of knowing whether it will help your mother or not. I would say though, argue with them and check the guidelines yourself - my oncologist was mixing the guidelines for 1st and 2nd line, and they were actually unclear and open to different interpretations - hard to believe, isn't it, when that affects our lives so much.

I would like to say how lucky your mother is to have you fighting her corner. My daughters and partner are supportive but leave all the investigation of options to me as I have a health background.

[zuzana]

Hello, i been on Avastin for 18 months. It was doing it job for long time but in the end it did caused bowel obstraction and ended up very poor in hospital with twisted bowel and soon after with bursted bowel. After this Avastin was stopped.

I should stop taking Avastin earlier but i must say it did keep disease under control for almost 18 months

Best of luck xxx

[Flamingobeef18]

I am currently on Avastin and have another 5 months to go. My oncologist tells me the treatment regime is 18 cycles and he feels that this is clinically appropriate for me. I had six cycles together with tax and carb followed by debulking surgery and then Avastin alone. My consultants have always remarked how impressed they have been at my response to Avastin but I have now started to have some side effects.

I too thought about self funding but now understand that for me my planned treatment regime has been based on my clinical need rather than on the cost.

My suggestion would be to have a low key chat about what your oncologist feels is most clinically appropriate for your mum. Hear what he has to say first and if he would advised continued Avastin past state funding ask him for his help in getting this for your mum. Should he not advise further Avastin I would be inclined to believe him.