Hi 👋🏻 I am currently on 3 weekly Avastin maintenance treatment following remission after 6 cycles of Taxol/Carbo for stage 4b ovarian cancer.
I am having quite severe joint pain and peripheral neuropathy after 6 treatments of Avastin and am interested to know if any others are having similar effects.
This almost feels worse than the chemo side effects. Does anyone else feel the same ?
Hi Fahoona, sorry to hear that you are finding the Avastin hard. I have just finished Avastin beginning of Sept & like you suffered with joint pain & neuropathy in my feet. When walking I felt like I was walking on stones & had an inflamed bunion on one foot which I didn't have before I started my treatment. You will be relieved to hear that the neuropathy & joint pain is gone already & the bunion is not inflamed so it doesn't last forever ☺️My thinking at the time was if the Avastin was doing it's job & keeping the cancer away I would tolerate it but some people prefer to ask their oncologist to change their treatment to something else so if you feel you can't tolerate the Avastin any longer maybe you could just ask is there another option. Best of luck with whatever you decide & keep me posted 🌸 Mag X
Thank you, Mag. It is a relief to know someone else experienced similar effects. My oncologist does not seem to believe me that this is because of the Avastin. He says all his patients have tolerated it well. Makes you feel you are going a bit mad!
I have been having terrible mood problems as well, I think mainly because he took me off my oestrogen patches when I was diagnosed (I didn’t have any surgery at all, as my cancer was all in my chest area, they didn’t find anything in my pelvis but pathology finally showed it to be high grade serous) I am now back on the oestrogen and hoping that will help. I have been affected emotionally by hormone levels for as long as I can remember. I had really awful PMS for years. The Covid situation of course doesn’t help as all my family and close friends are in the UK and I haven’t seen any of them for almost a year now.
I am having a 3 week break and seeing my oncologist beg of December to re-evaluate.
Anyway, enough venting! I am very grateful to have found this site and the support of all you wonderful ladies!
Thanks again,
Fiona X
Hi Fahoona Sorry to hear you are having these issues. I trialled Avastin in 2007/08. I did have the joint pain which I took pain relief for. The peripheral neuropathy I also had but unfortunately this was a result of the Taxol and whilst it did improve I still have some though it's not painful. The joint pain went after a couple of months of completing Avastin. I do have to advise that I achieved a remission of nearly 4.5 years so decided the pain was worth it. Big hug. Kathy xx
Thank you so much for taking time to reply. I am having a 3 week break to see if I get any relief from the joint pain and have restarted oestrogen patches also.
I am extremely grateful to have found this forum and to be in touch with all you wonderful ladies who are so supportive!
Thanks!
Fiona X
Fahoona, so sorry your having so much discomfort. I’m Stage 4 b and received Avastin for 22 cycles. My joints definitely suffered. I took Naproxen and this seemed to help. Being more advice than inactive helped too, just steady walking for an hour a day, easily achieved with two mad dogs 😂 Wishing you all the best, stay strong!
Thank you for your message! It really helps to hear from others who understand ☺️
My dog keeps me walking too, and she is such a comfort too. Don’t know what I would do without her!
Hope you are doing well.
Thanks!
Fiona X
Thank you for your post. My main side affect with Avastin is dangerously high blood pressure. Tinnitus and slight soreness of joints . Seem to last about 2 weeks post treatment. So have had a good week physically but blood pressure still too high for next treatment. They are moving slowly and carefully with BP meds as on first treatment they gave me a medication that brought my BP down quickly which caused me to 'drop fall' and break my leg and damage ligaments in my ankle! So the current Avastin causes a lot of pain in what 2as a recovering leg and ankle so a reminder of a dreadful.start to my treatment exactly a year today.
I am so sorry you had such a nasty fall and have that to deal with too. What do you take for the pain?
My blood pressure is creeping up and they have started me on a low dose of Amlodipine.
Thinking about you and hoping your pain can be controlled well.
Fiona X
The pharmacist thought theAmolodipine might have caused the fall. I wasn't advised it was best to take it at night when the risk of falling is lessened. I was given orimorph while in hospital then a high dose codeine which was a nightmare as it causes constipation which I already had problems with from chemo. Almost had to go back in hospital to get sorted but was saved that by a GP house call and let's just leave it at 'she sorted me me out' !! Iwas prescribed maximum laxatives for when it was at its worst then reduced and increased as and when I needed to. I would increase laxatives 2 days before chemo which did seem to help. This was possible as I was on 3 weekly treatment. Was in plaster and none weight bearing from 6th November to 27th Jan. Back and forward to orthopedic clinics along side chemo was not fun. Anyway I am through it now. I am left with a very sore ankle a year on but it could have been worse, at least I didn"t bang my head when I fell
Yes! I certainly did. I was on a vastin every three weeks with the exception of three breaks in a cycle from September of 2018 through July of 2020. I did a lot of research around that because at the time when I started, several oncologists that I worked with were a bit unconvinced that all of those side effects came from the avastin.
From what I gather, not everyone has harsh side effects from avastin but having been on avastin as the only treatment for nearly 2 years,, I can say with certainty that the longer I took the avastin the more intense these symptoms became. For another friend of mine, the only symptoms she experienced was fatigue.
I had to take myself off of avastin this last July because of the drastic side effects. I did find that I could manage some of these side effects through a very strict diet. I avoided foods that turned into sugars or caused inflammation. That helped quite a bit. Eventually, though, I couldn't continue.
Thank you for taking time to reply.
My oncologist really doesn’t think it is because of the Avastin. It helps to know I am not alone with this!
I am having a 3 week break and restarting my oestrogen patches to see if that helps. I didn’t have a hysterectomy because I had no disease in my pelvis. I seem to be an unusual case in more ways than one!
It is so helpful to be in this forum and I am very grateful to have found you all ☺️
Fiona X
Yes. Neither of my oncologists thought it was the avastin either. In fact, it was only about a year and a half after I was taking the avastin that my oncologist agreed it might actually be the avastin period that was because in the interim of about 3 months he put three more patients on the drug and they quickly began to complain of the same side effects. I called the company itself, Genetec, and they too could not understand how it could be the avastin because their original trials didn't bring up those kinds of side effects.
When I went off of aston, within 2 months I had none of the problems I was having before. I've started to be able to drink milk and eat bread again in moderation.
I've done a lot of personal websurfing around other people's experiences with avastin and a large number of my searches have led me to finding others with the same experiences. But I completely understand where doctors are coming from period if there's no solid scientific evidence they can't just come out and make a blatant claim. Besides which, have as soon as had some really great success with many patients. And there are quite a number of people that don't have any of these challenges. Blessings for you that this will work out and that you can find some relief if the avastin does work for you. I ended up getting on morphine and Lyrica to deal with the side effects and I did find that it helped. It did not help with the muscle cramping at all. But taking Lyrica and the 12-hour release morphine I was able to tolerate some of the joint pain and reducing inflammation.
What tips the scales for me was that I found research that showed that avastin was related to a high number of GI inflammation issues. I ended up with a terrible h pylori infection and a lot of damage to my colon and large and small intestines period it was so bad I could hardly eat anything and had lost a ton of weight. Since I've stopped it that's gone away. I did take a very strong dose of antibiotics to get rid of the H. Pilori infection and then a lot of probiotics to get my gut back into shape. However, my experience is that my personal biology tends to have a very strong reaction to a lot of these meds. I hope it works for you period and I hope that you're able to find something that reduces the muscle pain and joint pain.. blessings!
My joints are definitely taking a beating. I've been on it for 9 mos and onc has me scheduled for 2 years total! Feet hurt like crazy - yes, residual neuropathy from chemo mixed in as well - but hip and shoulder joints achey and stiff as well. One fixer has always been movement. Hurts at first, but limber by the end of my walk!
Thank you for your reply. I am so grateful to be in touch with you all and find some people who understand these side effects.
I am walking each day with my dog but lately have been feeling wiped out for the rest of the day after a long walk. Hard to find the balance.
I hope you find some relief from your side effects.
Take care and thanks!
Fiona X
Hi Fahoona,
Yes yes yes, absolutely. I was due 18 infusions of Avastin. Had 13 and had to take a break for 10 weeks. My Shoulders were extremely painful, I could not sleep at night. The locked up completely and I had very limited movement in them. I could not reach/stretch out to pick things up, could not do up my bra's (so gave up wearing them and wore tight vests instead, could not dry myself properly after a shower.
My hands also seized up, especially first thing in the morning and at night. I could not open jars, bottles, could not do up my shirt buttons. I was referred to Rhuematology.
All my joints hurt whilst on Avastin, it got worse and worse the more infusions I had. My ankles, hips, knees, shoulders. I started to get tender bumps on my knuckles, possibly the start of Osteoarthritis, according to my rheumotologist. although no history of this in my family.
After the 10 week break, I had a 14th infusions and the morning after, my hands seized up so badly, i knew then that it had to be the Avastin that was causing it. Had to stop the treatment.
I still have limited mobility n my shoulders albeit not as bad as it was. My joints still hurt, in particular I have a problem with my achilles heel. It has a big bump on it and I can only walk short distances before it really starts to hurt... I've had the problem with my achilles for several months now and I'm worried that it is not getting any better. I'll be seeing physio on 20th November so i'll see what they say. I have been given exercises by physio. for my shoulders... not much improvement as yet, but i'm hopeful as many women on this forum has said that their joint issues improved 6 or so months after Avastin. Keeping my fingers crossed.
All the best
Lisa x
Thanks for taking time to reply, Lisa.
I am so sorry you have had such a rough time on the Avastin. I feel I am headed down a similar path. My fingers are so swollen and sore and all my joints ache all the time, enough to wake me up at night when the painkillers wear off.
I really hope you start to feel an improvement in the coming months.
Has your oncologist suggested an alternative treatment for you?
Take care and thanks again,
Fiona X
Hi Fiona. No, no alternative treatment was offered or suggested. Avastin was stopped and they said that being that I had already received 14 out of the 18 infusions that I was due, they were doubtful that another 4 infusions would make any marked difference to the benefits that I had already received from it. I was always supposed to go on watch and wait after the 18th infusion, so that just started early.
Still struggling with my joints, swollen fingers, tender knuckles each morning... as soon as I sit down/rest/lie down, all my joints; shoulders, hips, knees, ankles, start to seize up.
I'm sure some of it also has to do with surgical menopause, which has hit me hard. Oh how I wish I could have HRT. But there's no way I can take that risk, being estrogen receptor positive. My Oncologists do not recommend it.
Wishing you all the best. I will let you know if I find some sort of relief/treatment that eases the aches and pains.
Lisa xx
Massage and PT has helped me w my back spasms
Hi there, I had to give up on Avastin after three because it upset my Chrone's Disease and made me very unwell.
Hi Fahoona, sorry to hear you're having such a hard time with the treatment! I've also been experiencing quite severe joint pains in neck and shoulders and also neuropathy in my wrists and fingers which only came on after I started the Avastin, 2 months ago, (I've been told that the neuropathy in my wrists and fingers is due to a long-term side effect from the chemo drug, Taxol, (I had 6 cycles of Taxol and Carboplatin), but it's strange that the neuropathy only came on just after I started the Avastin...I didn't have it when I was on the other 2 chemo drugs. I've been advised to have 18 cycles of Avastin and have only had 4 so far, so I'll see how I get on and let you know. I'm going to speak to my oncologist on 24th Dec, so I'll let you know what he says. (So far I'm only taking paracetemols at night-time, but the pain is worse when I wake up in the mornings!) I really hope you start to improve soon! Hugs, X
Thank you so much for your reply.I also did not experience much neuropathy with the Taxol but like you, have it in my hands, wrists, feet and ankles since starting Avastin. The joint pain and fatigue seems to get worse with each cycle of Avastin. It’s just so frustrating - as family and friends ( and myself too) seem to expect me to feel just fine after having such a good response to first round chemo and yet I feel constantly drained of energy and have constant pain.
Please do let me know how you get on speaking with your oncologist on 24th.
I hope things improve for you and you feel well over Christmas.
Keep in touch!
Fiona
Thanks for your reply Fahoona. Yes, i'll let you know what my Oncologist says when I speak to him on 24th Dec. I really hope you start to feel a bit better soon and that you can enjoy Christmas! Bye for now, Debbie
Definite side effects. Neuropathy, joint pain, post nasal drip, high blood pressure, and now tendonitis, BUT, it keeps my CA125 in a good zone, so I take analgesics when I’m really hurting. Hang tough! 🙏
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