January 2016 I was diagnosed with stage 4 Ovarian cancer and had 6 chemo treatments and they included Avastin. The treaatment program got the cancer, I was very lucky. I am now doing Avastin alone every 3weeks for infusion. I like I've been reading also have had terrible joint pain and extrem tiredness. I've been doing the infusions for 7 months but the pain is so intense I've decided to stop the treatmemt. Each month the symptoms seem to compound its self. I hope I'm doing the right thing. They were hoping I would do Avastin for one year but don't think I will. My CT125 number last month was 3.7 which is very low. I would love to hear anybodys experiences with Avastin and Ovarian cancer.
Thank you
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Sonshine1
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I had similar experiences but I got various pain killers on prescription to get me through the avastin . Ur doctotis will prescibe whats suitabke for u. I also took Epsom salt baths for the pain. For the tiredness I just slept. !! Got through the regime. It seems to be tougher on some than others. Good luck .hope u can manage to finish it out too Mx
Hi 9974........thank you the advise especially about the epsom salts. Unfortunately they haven't suggested any pain medication except a anti-inflammatory I can only take once a week. I'm living in Ecuador and they feeldifferent about pain meds. I was here when diagnosed and felt very good about the health care here, however do have a bit of a language barrier,
Hi Sandy, welcome to our club, the one that none of us wanted to join but... I'm sorry I cannot help as I haven't had Avastin but I just wanted to say hello. You must do what you feel is right for you but if you haven't already tried prescribed pain relief perhaps it might be worthwhile to give some a try before you stop the Avastin. Your CA125 is fabulous, mine has never been that low! Good luck. Ann xx
Hi Ann.....Thank you for the nice welcome. I also had Avastin thought my chemeotherapy so actually have been taking it 16 infusions. I responded very well to my chemo treatments because my CA count dropped into normal range after third chemotherapy. And when I was finished with chemo the marker was at 12 and ha continued to drop to 3. The Dr's are a bit amazed. And my blood work is the normal range for everything showing my immune system is very strong now. It makes it tempting to be done with all the treatment. My Oncologist last visit said she felt I really only needed 3 more infusins but so afraid of the compounding affects and then it takes approx 2 months for the symptoms to subside. Is your cancer gone, are you going to be put on Avastin. Good luck with everything too.
I can't get Avastin living in Northern Ireland. I'm 4 years from diagnosis now. I've gone through chemo twice and I have been living with tumours since last August when I finished second line treatment, which didn't clear all my tumours. I'm currently on watch and wait. Ann xx
Wow Ann what a struggle......I'm so sorry. Just keep fighting. Is your's Ovarian, what stage. I was stage 4 advanced and they felt I would have a real battle ahead of me but my body really responded well to the Chemo plan they had me on. They have some amazing things out there today. Will pray you respond to what ever they try. Please keep me posted.
Thank you Sandy. I am stage 3b. It had spread to bowel and lining of abdomen. I did get to NED after first line but unfortunately it came back 8 months later. I went on watch and wait then and remained on that for 18 months before having to start chemo again.
Yes, the joint pain is bad but i asked what pain relief i could take and it does help. The tiredness has now become a way of life, and i just go with it. I have three more Avastin infusions to go, and i would say that my general well being is so much better than when on Carbo/Taxol, that i don't really think about it. Talk to your team and see if they can come up with something to ease the side effects.
Hi lovely and welcome to this wonderful site we're all very friendly 😊
Can I ask have you had debulking surgery? If not could be worth asking about some NHS trusts just do it others you have to rant and rave at about getting it done. If they have said 'no hope' as ladies have been told then just argue it's better out than in, also I find mentioning this site a very key thing in some of my special person's onc appointments as she started with 'no hope' stage 3c after 6 chemos and avastin she had debulking surgery she's on her 3rd line treatment now though as she's reoccurred twice but is still here 2 years 4 months later.
I have had a complete debulking surgery. I have no sign of cancer in my body at this time and they say with my numbers it should be unlikely to come back. Wow 3rd line treatment. Hugs to her, I can't imagine but we ladies do know how just do what is needed sometimes.
HI sonshine, welcome to the wish we weren't all here club. I am on avastin and have just had my 14th. a couple of months ago I told my onc about the pains in my muscles, and he advised me to take vitamin b12 tablets, which I have been doing with great success. I dont have any muscle pain at all now. Perhaps you could ask your onc about them. Well hope you get sorted and congratulations on such a low ca125 (mine is currently 1300).
Hi Jeanette, can I ask, does your gp prescribe these vitamins or do you buy from a health shop or pharmacy? Can you recommend a brand?
I'm on Avastin too and the Drs cant really prescribe Pain killers (too long a story..) I'm going to try physio and having read the other comments here, I've also increased walking and activity. If I can add a b12 supplement that helps I'll try it.
I'm notoriously bad at taking supplements but I want to give this a go.
Hi T. My onc. prescribed Hidroxil B1 - B6 - B12, but as I live in Spain I don't know if they are available in UK. perhaps you could ask. or look on internet to see if available for you. xx Jeanette
I get it Sandy. You're in your second year of treatment and it just keeps on going. Then there's pain and fatigue too.
I'm a month or 2 behind you - I knew in February 2016 that I needed an op and that I had a very large cyst. It was only post op that my borderline cyst was diagnosed as 2b (I think) fallopian and Ovarian cancer. Then after chemo I was restated as 3c as the Drs realised they'd missed another tumour. This meant i was offered Avastin and have done 7 months like you.
It really hurts the joints and makes me tired . I very nearly stopped in April/may as I'd just had enough. I could just about tolerate the pain and fatigue but it was how I felt emotionally that was the problem. I felt like I was going crazy - angry, frustrated, crying and emotional. This just isn't me (apart from when my husband and kids drive me crazy but that passes after 40 mins)! This was constant and terrible and along with the pain I just wanted to stop.
What changed for me was when I sat for 3 minutes in silence in my oncology appointment (with a very unhelpful registrar - my lovely oncologist was elsewhere). I had to decide whether I would continue or stop. If I continued I couldn't keep feeling like I did each time I had a treatment.
I decided to continue and I've decided to get painkillers for my joints and ask for a physio for my pain. I have been told the Avastin has made a tumour go away and so I know it is helping me. It was my decision to continue. I shut out all the noise of my family, friends and Drs and made my decision. That has given me such a great calmness.
This is where I hope I can offer some advice. Take whatever time you need to decide. Find out what the hospital can offer for pain. let yourself come to a decision about Avastin.
Hi T.X..........Thank you for all the information. Sounds like you have had quite a struggle. I agree, input from so many people sometimes can muddle the mind. My husband just hates seeing me suffer so much and after each treatment there seems to be something new to deal with that seem more serious than the previous month....it scares him. Counting the months of Avastin with the chemo and then after I have had over 16 infusions over a 18 month period. Hugs and best wishes to you as you continue your journey.
Thank you for the nice reply. Yes it is a tough decision to quit and I did struggle while making it and prayed for guidence and many talks with my husband. The tylenol and anti-inflamatories didn´t seem to help much and my GYN was always warning me about my liveer regarding the pain remedy. I also started to get new symptoms I hadn´t had before like constipation, extreme swelling in my leg and feet and my hads swell so much I couldnt even fold them and I had to get all my rings off. Luckily all that lasted only for a couple days. I had 16 infusions if you include the ones with the chemo and I just felt I better start getting my body back in shape before something really weird.happened. I think the straw was when my Onc told me that all the tings I told her were absolutely not symptoms, Avastin doesn´t have symptoms. I felt I was on my own for this with no support help if needed. I´m still in a fair amount of discomfort but the last few days have been much better. It is now 5 weeks since my last treatment.......so maybe just 5 more to go. All my tumors are gone after the chemo so praying I made the right decision. I will keep in touch. That is so awesome you were able to shut out the backgroind noice and make your decisin. I watch for your progress.
Thank you for take the time and posting your thoughts and an update. This is a really amazing site. I think particularly because of the thought people put into their posts and the honesty that comes through.
I have seen the odd thread that has become critical and judgemental and I find it shocking because it's so rare here. We're all different, all ages, all parts of the world but above all we have the solidarity of comrades in arms. I often hate the talk of fighting / beating cancer. And talk of how brave we are. We're just like everyone else but in a terrible health situation.
I'm so pleased you came to your decision. I always ask , why 18 avastins, why not 12 or god forbid and odd number like 15! My oncologist just smiles. I'm lucky as she is a great patient advocate and when I list my symptoms she will say that they're likely to be caused by Avastin. The only time she said definitely not was then my thyroid results went crazy ( I have an underacrive thyroid too).
I hope each week things ease for you. It's just brilliant that your tumours have gone.
All the very best
T. X
Ps I have Avastin 11 this morning. But I'm being met by the lovely Barlow for a cup of tea beforehand. So I'm actually looking forward to going to hospital!
I was diagnosed with stage 3c in Sept 2015. I have been on a clinical trial which included carbo/taxol and avastin and debulking. I was to do 18 infusions of avastin, the first 6 with carbo/taxol and debulking in the middle. I did not have the last 2 avastin at the end of 2016 because it was causing painful peripheral neuropathy that was unbearable. None of the painkillers were working. I could not decide whether to quit or finish up. There was a risk the neuropathy would be permanent.
As I had been NED - no evidence of disease since surgery and my ca125 had gone down and stayed down I was taken off. Just within th past 2 months have I gotten the peripheral neuropathy under control with cymbalta, lyrics and vitamin b6.
At least for me the avastin on its own was presented as the easy part. It is not. I think in many ways the fatigue is worse.
Hi Susan........thats kind of where I'm at. I have had 6 with the chemo and 10 or 11 since then over 18 months total. My Dr suggested 2 possibly 3 more to complete the treatment but we feel over a year of that in my body is enough. As one of my Drs said "sometimes you need to weigh the risk vs benifits. I have newropathy through my legs and feet much of the time. I was also presented that Avastin was a no side affect part of this. Congratulations on your CA125 dropping and staying down.
Welcome to the teal family . You are not alone in this . I was diagnosed stage 4 inoperable in June 2016 . Had 4 carbo/taxol then could operate. Major debulking and then 2 more chemo . They kept changing their minds about the avastin . First I was going to have it with my 2 nd chemo , then they recommended holding off until after surgery due to issues with my bowel . After surgery they said I didn't need it as told NED then with 6 th. chemo they decided I should have it . They thought it was too much of a risk not to have it . So I am about half way through due no 9 next week . Have the extreme tiredness that just suddenly hits me and just have to take a 10 min nap ! ( not working so normally not a problem !)
Get very stiff if sitting for too long and had terrible knee pain for a couple of cycles some muscle ache but the aches for me were much worse when on chemo . Had aweful sinus issues when first started and my throat still gets dry and voice goes croaky if talk too long ! Yes and can also get very cranky with hubby normally in day 2 after IV . Had to miss a cycle due to eye issues that were diagnosed as posterior vitreous detachment ( get floaters ) but they didn't think linked although I have my suspicions.
Interesting when I had the break I did feel less tired and achy and often wonder if I do need to be in it ! but have decided for me to trust my teams advice and better to keep on the avastin as all manageable so far . Did you have any joint issues before ? I was told that it can compound any problems you had before diagnosis . I had a weakness in my knee before .
Definitely see if there are any meds that can help if you want to continue .
I heard Prof Jayson from the Christie speak at the Ovacome day ( think you can still access it through site ) he has research that makes a case for women to stay on as long as they can tolerate , if it is working as a maintanance treatment . Have met someone that was successfully on it for 2 1/2 years ( think only fund for a year now )
Sorry for the long reply . Some great advice from Rosewall . Get all the info you need from your team and any support with meds etc to help with the side affects and a second opinion if you think it will help . Then some space to make your decision . Unfortunately it is impossible to have all the answers , is it the avastin ? is it still recovering from chemo ? is it just getting older !!! Take care love Kim x
Hi Sunshine I'm am at the same stage of avastin and the arthritis like pain is defo no fun.
If you really want to stop Avastin do. You have to follow what you really want and listen to your own body.
That said, if you want one last go at controlling and reducing the pain, here are some ideas. I don't know which works best as I do all of them and got the best result with not relying on exercise alone.
1. It hurts and your tired but exercise. I walk every day. Gradual it reduces the pain by reducing inflammation and endorphin release.
2. Weekly acupuncture - your oncologist may be able to refer you. Trials show efficacy for some in our situation so worth a go.
3. Curcumin - there are also foods that reduce inflammation and arthritis like pain. There is an article by Jane clarke on this - think she posted on Macmillan website under expert advice.
4. Keep warm. It reduces pain as long as you aren't too warm
5. See a physio if your heels and feet really help. You may have developed plantar fasciitis. Very common and treatable. I had and some other ligament strains.
I was inspired to really try when a fellow patient who was very active and taking a range of supplements said she didn't have arthritic pain.
Whatever you decide. There is light in the avastin tunnel. Take care. Do let us know how you get on x
Thank you for the great advise, some of those things I do and some will give a try. Yes stopping Avastin i personal and different for all but sure nice to have people to bounce things off of and share ideas. Will keep all posted
I gave up on Avastin because I wanted a decent quality of life with whatever time I have. I'd had enough of feeling crap after the chemo! I'm still NED after a year and am enjoying life. I am also able to support my husband who will shortly (probably) be having surgery for oesophageal cancer. I will need all my strength for him.
Do whatever you feel is right for you. I wish you all the best.
NED means that CT scans show no evidence of disease which means that they can't see any cancer left. There could still be microscopic amounts left of course which is why I have 3 monthly checkups. Thanks for your good wishes.
Thank you to everyone for a nice welcome into the group and the great pieces of advise......we all do so experience things differently. I forgot to share that. one of the things I did early during the chemo and still to this day is take an asundry of chinese herbs that were recommended by a friend who works with a Chinese Dr. in the states. My Dr's are pretty amazed at my CBC and CA125 numbers. One Dr knows I am taking the herbs and he said don't stop it is working. Help comes in many ways.
I've enjoyed meeting all of you
Talk soon............Sandy
I am trying to decide to return to Avastin. I've had severe neck/shoulder pain that includes liver pain as well (I think it is the liver as it's below right ribcage)..it started after my 1st treatment of Avastin in December of 2016, and my last was March 30, 2017. My tumors from both cancers shrunk so I've been on break from treatment. I return to cancer center end of Aug to have a CT scan. The pain is awful..hurts to lie on my right side. My last CT was May 30th and didn't show anything new, and nothing in liver or where this pain is at..I seem to have side effects intensify "after' stopping the treatment..Tiredness is extreme as well. I too, am stage 4 but because of the location of the tumor and stage 2 with NHL. The Avastin shrank my inoperable tumor between the vena cava and aorta (it was biopsied to confirm the original cancer, fallopian tube carcinoma from 2014).
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