Well after a lot of thinking and reading I've decided to stop Avastin, I'm calling my oncologist tomorrow to call a halt. My life is starting to feel like it has slowed to a stop, everything hurts, I can't wake up on a morning as I'm stuggling to sleep and my 2 day a week job it giving me the fear.
I feel a sense of relief.
Tesla_7US thank you for pointing out the hard facts re Avastin. Thank you everyone who answered my post, my oncologist seems quite shocked at how badly my body is reacting to it, which seems quite suprising given the amount of lovely ladies on here who experience exactly the same thing.
Hopefully I will feel a lot better soon and enjoy a bit of time pain free.
I think you have to weigh the benefits (a bit vague) against the side effects....of you feel a sense of relief then that tells you it’s the right decision for you!
I tolerated it but I’ve really no idea if it delayed recurrence or not xx
I really get where you are coming from and have been having some thoughts myself along those lines but I'm not quite there yet. I hope life gets a little better for you.
Hi Claire, i’ve been thinking about it for the last three treatments, things have just come to a head, this would have been my 15th, I think if I knew I only had 3 more to go i’d stick it out but my oncologist said I’ll be on it until it doesn’t work any more or my bloods are too bad.
I’m not saying I wouldn’t take it again but for now I really need a break. Wishing you all the very best with your treatment.
Lisa x
Hi there I fought to stay on Avastin despite the side effects. I felt I had to give myself a chance to stay around for my family and grandchildren. I did benefit greatly from it. However you know what is best for you
I have a 13 year old son so you can possibly imagine it has been a very hard decision. X
When I started treatment a year and a half ago, Avastin was offered as part of a trial. I looked at the side effects, of which one occasional one was bowel perforation. ( not to mention bleeding on the brain, etc)
We already have enough bowel problems, so I did not want to risk anything else going wrong.
Luckily, I did not have to make the decision, because I had something else wrong that the doctors feared would cause an unwanted bleed. So I never had it.
Later I saw studies that showed an equivocation. Sometimes it worked and sometimes it didn’t and many doctors hesitate to prescribe it because the side effects can be life threatening.
In other words, I think you are making the right decision.
Thank you for researching and weighing the facts. I have recently been offered a medication that has side effects which could kill me, perhaps even faster than the OC I have been successfully battling for over 3 years.❤
Make the best memories for your son! He'll remember.it doesn't have to be physically...if your going to be done with the battle of surviving this horrible disease, push and battle to make some happy memories.push back the pain and smile at him.write letters for him in his future? Videos? Enjoy every moment! Fight for that smile 😆😃😁😀
Remember ---- There are women who recover and survive this disease!!! Not taking Avastin doesn't mean a woman has given up! You are choosing the best path for you.
I decided to decline Avastin, I already had bowel issues and severe rheumatoid arthritis, chemo had left me with painful nephropathy so I was not feeling great. My oncologist was ok with my decision and said that it would only prolong my life for 5 months assuming it worked on me. I did lots of online research, I also spoke to my gastroenterology surgeon who said he didn't like Avastin. I am currently waiting for my BRCA results to see if I qualify for Olaparib, but have also read today that Niraparib is now also available for negative BRCA ladies. I realise Avastin has worked amazingly well for some ladies on here and for that I am truly glad, but it wasn't for me. It is a hard decision to make but once I said no the relief I felt was overwhelming. Wishing you all the best. Lyn xx
in reply to
I’m feeling the same sense of relief today. I wish you all the very best for your future treatment Lyn and thanks for your message. X
A brave decision - but it seems like the right choice to me. Medicines affect everyone differently, and my belief has always been, what's the point in making oneself really ill all the time in hopes you get a few more weeks or months of life, when in reality, there's no guarantee the drug will give you that time anyway, and for you, it seems what it does guarantee is the time you've actually got is spent suffering. Not all drugs suit all people... and quality of life is just as important as being alive. Avastin was originally offered to me, but the Head Oncologist, after a discussion, decided it was too risky given I already had clotting/bleeding problems anyway, so it was crossed off the list. I was relieved, frankly, one less decision to make... I often think it's sod's law - this disease is bad enough on its own, but the drugs used to 'treat' it make it even more of a nightmare. I knew the survival time for my rare type of OC, at stage 4b with adjuvant chemo was around 8-10 months; I decided I'd get just as long if not longer without any drugs at all following surgery - and I have. I didn't do nothing, I did the usual change of diet and addition of certain supplements, just in case it helped and It's now a year since my surgery... I can't say I'm looking forward to developments this coming year though... but so far, nothing much going on apart from a couple of dodgy lymph nodes in the groin. Apart from my massive incisional hernia, which is a bit of a nuisance, I've been very well, by and large.
I hope you feel better soon and get to spend quality time with your son and living life.
Thank Miriam, it sounds like you have taken control and are doing well despite your prognosis. We all react so differently to drugs don’t we. I wish you all the very best for the coming year. X
I have no experience of Avastin but believe that we always have to equate our quality of life against unknown benefits, we are not all the same and what works for some doesn’t for others or doesn’t suit. If your quality of life is currently so poor then I believe you’ve made the right decision for you and given you’ve had a sense of relief just confirms it. There will be something else for you to have I’m sure but you obviously need to give your body and your mind a rest for a while then you can regather the troops and be ready both physically and mentally for the next round. Enjoy lots of quality family time lovely ❤️Xx Jane
Thank you Jane, my husband works in Oman so it’s been invaluable getting input from all of you as the input I get from him has been limited just due to practicalities of communication.
Hello Lisa. I've been on Avastin a couple of months now and I have excrutiating pain in my upper arms, neck and shoulders. It's so severe that I'm back on morphine. Now the doctors are querying polymyalgia rheumatica. I'm sure you have made the right decision for you and that's what counts at the end of the day. I wish you well and hope for a better year. Love from Jayne x
That’s exactly the type of pain I am having, it’s so awful. Sending you all the best to for the year ahead. XxX
Well done for making the decision, Lisa. Your body knows what it needs, and it sounds like Avastin isn’t it! I hope the side effects ease off quickly for you. Vicki x
Good luck Lias66. Sometimes we take these drugs which are prescribed without fully looking at the implications and risks. I think you’re doing what’s right for you and we all have to put ourselves first and think what’s right for us. To the medical profession we’re not really treated as individuals but we’ll all respond differently to different drugs and treatments. There now seem several other treatment options if and when we do reoccur but for now do what’s best for you xx
Thank you, support has helped so much. We all have different paths through this disease, This wasn’t the one with my name on it. Wishing you all the very best. Xxx
You sound an amazing woman - bringing up a 13 year old son and husband overseas etc - and then having to make these life affecting decisions. I want to just say - well done and good luck on the next hurdles you may encounter. You’ve “got this” and I’m sending you wellness wishes.. x
Hi Lisa - I was diagnosed 4 years ago. My strategy always was to take a break from chemo. I am
On Avastin now since May. Stopping after last CT scan which was good (not NED) taking a 2 week trip to New York and then 3 weeks to Southeast Asia. I benefit from taking a break and returning to normalcy. For me it’s important to take charge of my treatment for awhile at least.
Sounds like you have a good plan! My oncologist says Avastin has a half life so it will stay with you for awhile. I took a month last summer to go to a family reunion in Ireland and Norway- CT was good in September.
Wishing you a lovely break!
That sounds like a great plan, one of the reasons it’s come to a head now is a planned ski trip to Austria in Feb, the thought of feeling like this is just rotten. Maybe i’ll see how I feel after then.
Hi lias66, this is my first post here, i just wanted to encourage you on your decision to stop avastin, i also have come to that decision, i am using tumeric powder and clove powder everyday, praying a lot, and focusing on my spiritual self as apposed to the material body. All the best to you ,om tat sat, which means , eternity knowledge and bliss,
Just reading your post about Avastin and all the reply’s and it makes me think about all the side effects I was having but felt it was best to put up with them to keep the cancer at bay but in reality it never did keep it away for very long. 1st time I got 7 months between chemo and reoccurrence while on Avastin and 2nd time just over 4 months as it has Just reoccurred last month. If they manage to clear it again I will think long and hard about going back on Avastin. Starting Caelyx on Wednesday which again I’m dubious about as have read mixed opinions on here but I do need to fight this to be here for my family. I have high grade serous like you. Up until now I have responded very well to chemo but am now platinum resistant hence the Caelyx. Hopefully this will work but they will scan me after 2 cycles and if no improvement they will put me on tupotecan which I’ve never seen mentioned here. I think you’ve made the right decision and at least it gives your body a chance to recover from the chemo and be ready for whatever life throws at you. Best of luck and I hope you get some energy back soon.
This high grade serous is a total f***er, it really seems to adapt quickly doesn’t it. I wish you all the very best for your new treatment, it sounds like they have a plan.
If I’m honest I think I’m in recurrence, I’m feeling my lymph nodes in my groin again and something going on near my ribs. I see my oncologist in April so having a break until then, unless symptoms get worse quickly.
It’s funny how we know these things. Although I hope your wrong. Fingers and toes crossed for you.
My kids are Charlotte 13, Cian 16 and Scott 19. They’ve been through so much in last two 1/2 years as my Mum got breast cancer just after I was diagnosed (all fine now) and the this time last year after I was told about my reoccurrence my Dad passed away suddenly so it’s been a hell of year. Just hate putting them through it all again. They all seem ok but so hard to tell. Off grocery shopping now with Cian.
I bet they keep you on your toes, I have one boy Milo aged 13. It sounds like you have had a hell of a time over the past couple of years, I’m sorry to hear that. Take care of yourself and thanks for keeping everything crossed for me. Xxx
Hi Lisa you have so totally made the right decision to stop when you were in so much pain. I too stopped avastin after 11 of the 18 treatments. It was a very difficult decision to make because I was part of a trial and I was initially so delighted that I could get it when so many others couldn't. I have a high pain threshold and had 2 children without pain relief but this drug really changed my quality of life. My neck was so painful that I had trouble driving, my hands and fingers so sore that it made it impossible to hold a pen or peel a potato.My feet were so painful that walking was difficult. Luckily my oncologists made my decision for me and I stopped. It was such a relief and I stayed stable for 16 months afterwards. I am now on carbo caelyx but would not want to do avastin again.I called it Beelzebub . It was devilish! !! Enjoy your ski trip and have no guilt whatsoever of letting the devil go xxxxx
I love that name for it, totally spot on. Your side effects sound very similar to mine, the hand one definitely, I found holding a mug of coffee really hard! Wishing you all the best with your treatment sans Avastin. Xxxx
hi lisa,I was relieved when stopped at 24 infusions, ok 1 year off no chemo, but someone said to me that she reacurred as soon as she stopped, well its happened to me ca125 is now back 360, chemo delayed yesterday as bowels are constipated , 6 days no movement tried all,been told it was laproscopy ! who knows so next tuesday start cisplatin.whichim dreading but I know it will kick its ass! Not sure if avastin helped! or weather sticking to chemo when needed! avastin can have long term side effects,mine are just subsiding good luck xxx
Hi Jools,
gosh i bet you were relieved, you did very well to manage 24, it is strange how we all take differently to treatments, sorry to hear you are now in recurrence. I hope things pick up for you when your new regimen starts. Thank you for the good wishes, sending them right back at you. Xxx
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