I am trying to help my mom make a decision and I need your help. She is a vibrant and healthy 75, IIIC, had debulking, 6 carbo/taxol for first line, and is being offered Avastin for 15 months. Not just offered--strongly encouraged by 2 oncs. She went to the Avastin website and is terrified of the possible side effects and since she has NED and is starting to feel better every day, wonders if she really needs the Avastin or if she should just wait until "if and when" the cancer recurs. I know this is her decision, but from what I've learned on this site, and from the other research I've done, she is lucky to be offered it and I want to let her know that others who have had it don't usually suffer from much in the way of side effects. Also, the website said she might lose her hair--and since it's just starting to grow back, she really hates this idea.
Is there any way to measure Avastin's efficacy? And if you received it, were the side effects, if any, worth it?
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Hi I was on avastin only had five doses as unfortunately had surgery to remove tumour but wound took nearly six month to heal and could not have avasin while wound u healed and the six month break made it impossible for me to go back on it to say I was gutted was an understatement yes I had bad leg pains but when I was on it helped knowing it was stopping new cancer cells growing giving me more time and as you said not everyone gets the chance to go on it who is to say if funding will still be available at a later date
I was on avastin for 12 months on a clinical trial in 2008/09. I don't think I had any real side affects. I was on chemotherapy too for the first 5 months of the clinical trial and the chemo did make me Ill and I lost my hair. My hair did grow back whilst on avastin and I honestly feel I was very lucky to be on the clinical trial. I have been in remission for over 5 years but my cancer has just returned, maybe it would have returned sooner without the avastin, I don't know but the clinical trial has had good results. A couple of ladies I know actually begged their oncologist for avastin rather than chemo again when their cancers returned. If I am offered avastin again I will definitely have it, not so sure about chemo though! Good luck, hope all goes well for mum. Xxx
I was on Avastin and it slowed down the progression of the disease. I had no real side effects apart from a constant runny nose. No hair loss, no nausea, nothing to report on the side effects.
There are many ladies on this site that are continuing with Avastin and are doing very well.
It's a maintenance drug, not chemo, and most ladies tolerate it quite well.
My advice would be to go for it if it's offerred. It's not always available to everyone.
Good luck to mum, Irene xx
Hi, I have been on half dose Avastin for twelve months and the only side effect I've had is bad sinus with a headache at times. It also raised my BP so I need to take meds now. It was worse in the beginning and although Avastin is cumillitive the side effects seem to have improved. My GP gives me acupuncture every week and it works a treat. Although my Cancer has started to wake up again, I really believe the Avastin has helped. I am hoping I can continue on it. Best wishes in whatever your mum decided to do. Hugs Gill xxx
Hi, Obviously this is your mum's call and whatever decision is made must be what she thinks is best for herself. No point in her starting a course of treatment if she feels at the bottom of her heart that it's not right for her.
I'm rather intrigued it's been suggested as the National Cancer Drugs Fund policy on Avastin at first line is that it's 'not for patients with stage I-III disease who have had optimal debulking'. Perhaps your mum doesn't have to rely on the NCDF which is restricted by cost rather than efficacy.
However, the main question was about side-effects. All drugs have side-effects. I guess if that's the only worry your mum has she can start Avastin and then stop it if she has problems. I had 16 out of 18 treatments of Avastin before there was disease progression. Did it delay progression? I'm afraid we never know on an individual basis but we can only go on stats for a population of women who've had it and generally it's thought to delay relapse.
Side-effects I experienced were a itchy blocked nose, nose bleeds, and joint ache. Upside of taking it is you feel you've taken every opportunity to challenge the disease, the downside for me was the bore of spending a year going to hospital every third week for obs/bloods, and Avastin the next day. I felt as though I never had any remission at all and quite honestly was ready to stop it by the 16th treatment. Luckily for me my hospital took me off it as soon as it wasn't working and I've had a break from hospital visits for the last five months but expecting to restart chemotherapy again soon.
Hope all these comments help you mum to decide what's best for her.
Hi, I have had debulking surgery and 6 rounds of chemotherapy same as your Mum. I'm now on Avastin no 11 next week and will have 18 in total. I've had minimal side effects mainly tiredness, aching joints and a runny nose. As some of the other ladies have mentioned it is a maintenance treatment, keeping the OC away for as long as possible! Ultimately it's your mums decision and hopefully the posts on here can help her decide. Lots of luck and best wishes. Andrea x
I had 13 cycles of Avastin before stopping it because of progression. The same side effects as mentioned before, runny nose mixed with blocked itchy nose ( contradiction I know!) small nose bleeds....in fact knew the Avastin had stopped working when my nose bleeds stopped. Aching joints, but my oncologist believes that's more to do with menopause and post chemo than Avastin.
If given the option, I would do it again. Yes it's a bind to keep going to the hospital, but at least I felt like I was doing something to combat the growth.
I have to believe that it kept the beast at bay for a while.....
Dawn xx
In addition to what have been said, here's the newest data on Avastin:
Hi, I was on a 12 months Avastin drug trial in 2008. No real side effects apart from the aforementioned runny nose and mild nose bleeds. I was well enough to work full time whilst on Avastin and after the trial finished I had a further three and a half years before I had a recurrence. Would I have Avastin again? most definitely. Hope that information helps your mums decision x
I was told that I do not qualify for Avastin! I am also 75 diagnosed 3c in 2009 and have had 5 rounds of chemo and 2 ops. I am not currently receiving any treatment though my GP has prescribed Metformin for the steroid induced diabetes and hope that will give me longer with better quality and hoping to find some trials I can join. If offered it I would take Avastin hair loss is temporary (my younger sister had male pattern baldness and that is permanent! She has a really good wig but when I lost mine I wore turbans and scarves! It was worth the year and I used them cold cap for the next chemo and kept my hair! The really good news is that I am still here 4 years longer than I expected to be!
I've been on avastin for 17 months now with only minor side effects. I did have bad colds and a chest infection over the winter but the oncologists say that was not the avastin - I think it may have been more to do with the chemo (Carbo/gem) that I had along witht the first 5 months of avastin. I have had a bloody nose but that stopped after about 6 months - I just sometimes feel like I have hay fever now. I have had leg pains but they disappear if I go for a walk which I do every day. Walking should help stop the rise in blood pressure and DVTs that are some of the scarier effects of avastin. I've been off chemo for a year now and been fine apart from an unrelated fall when I broke my arm, just tripped over a higher-than-I'd-realised kerb. There are some very nasty side effects but 2% of people get them so I thought (still think) that it's worth the risk. My CA125 is going up now and I expect to be back on chemo in a few months though I'm still on avastin as they think it's slowing the growth down. The consensus seems to be that it adds 5-6 months before recurrence. Well I am so glad I had those months - I've had a great time and spent some time with my latest gorgeous grandson feeling myself rather than through the fog of chemo. Your mother can only decide for herself though.
I have been on Avastin for two years the first year was with weekly Taxol the second year on its own . I will soon be coming off as my CA125 is rising again and will probably
be going on to caelyx/carbo. The only thing I have had with the Avastin is a runny nose and a few aches. No hair loss . In my opinion go for it.......
Hello. Just wanted to comment on Avastin - I am on this drug for a long time and yesterday had No. 33 infusion- so hopefully that will help your Mom decide. It works as a holding drug I suppose - by keeping the little buggers at bay, until they decide to mutate again and turn up somewhere else, as in my case
Didn't lose the hair, and at present have a nice crew-cut style of new hair - 3 months after finishing the harsh chemo.
Of course, like all drugs there may be side effects - but any of them are managed, by more drugs of course.
So with the benefit of Avastin, and despite 2 recurrences of OC, I am still hale and hearty.
However, I do know some women that the drug did not agree with , so there are 2 sides to the drug.
Best wishes to your Mom and the whole family - and hopefully you will have a good Easter and can leave the hard decision until afterwards.
Hello , I've just had my 11th avastin treatment , there are some side effects runny nose and achey joints , but being offered avastin I took it straight away , my oncologist said its offered to people most likely to have a recurrance quickly , if yr mum is feeling good avastin lets you continue that , I know lots of people taking it and there is no hair loss . I've been on holiday twice since starting it and coping well . Best wishes to your mum.
I have been on Avastin since October 2013 and doing okay. I have a runny nose and sinus issues. I know there is a huge list of side effects but they are to warn people. I take bp tablets anyhow so my blood pressure has been okay. No protein in urine or blood clots, You do feel tired with Avastin but after a rest you recover. I know its a pain but it has kept me stable so far and for me yes the nosey problems are worth it. Some of the website are oversuscribed especially the american ones. If two oncologists prefer your mother has this drug then I certainly agree. It prolongs remission and extends your life and you can live with it. I have had no hair loss from it at all, hope this helps you, message me if you have any further questions
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