I hope you are all managing to keep safe during this time, and all have your grocery and medication deliveries sorted!
I had 6 x taxol and carbo wich finished in December 2019.
I've been having Avastin since my 2nd chemo infusion. Avastin is continuing but I've had to postpone #13 infusion.
I've mentioned before on this forum about my painful stiff shoulders... but now, for the past two months my hands are seizing up really badly, it's worse at night.
When i first wake up, my hands are like claws and it takes a good hour and a half for my fingers to loosen up and get moving. It's very uncomfortable and it feels like if i try to clench my hands to quickly, my knuckle and finger joints will pop out of place.
Iv'e spoken with Rhuematology and had blood tests. I do not have Rheumatiod arthritis. I tried Naproxen which didn't work. I have now been trying Etoricoxib which doesn't seem to be working either. I'm worried that if I continue with my avastin treatment my hands and shoulders are just going to get worse and worse and possibly risk permanent damage and permanent seizing up. But i'm worried that if i stop avastin, i will risk the cancer returning quicker.
Has anyone experienced this before and have any advice - much apprecciated.
Best
Lisa x
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Meridian14
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My last Avastin was June 2017 but I can't remember how many I had
I started having it administered with number three of chemo, them it continued after chemo had finished. I think I got the alloted sessions under NICE guidelines.
Re the arthritis, I found limited relief with Flexiteq cream, and keeping moving.
I have RA as well as OC. I can tell you what helps when RA affects my hands... and as Avastin can mimic rheumatoid might help.
Warm water soaking, compression gloves, support bandages on wrists and gentle exercises to get your hands started in the morning. Treat your hands with care and don’t overdo actions like peeling spuds etc. Hope they feel better soon xx
Thanks for your response. Good tips there - thanks so much, I will try them. I do the gentle exercises in the morning... tbh i have no choice as that's the only thing that gets them moving. I hope you managed to get home and are not still stuck in Hospital.
I, too, suffer from terrible shoulder pain from Avastin. I take my 13th infusion today. The care team blames it on arthritis, etc but my tests do not reflect it. It started in one shoulder in December and now the other shoulder has mirror image pain. I am going for a cortisone shot Friday (my initial one was cancelled due to Covid). I am praying for relief. I can’t sleep on my sides (am a side sleeper) and must keep my head elevated to sleep at all. My GP finally gave me Dilaudid for when it’s bad. I cannot wait to get off Avastin in July. I’ll let you know if the cortisone injection works.
Thank you for your response. Mine started in one shoulder too but my other shoulder very quickly followed. My bloods that went to Rheumatology did not show any obvious evidence of Arthritis either.
I will see if postponing #13 Avastin for three weeks makes any difference. I'll let you know.
Yes, please do let me know if the cortisone works. I have been offered this but I thought i'd wait to see if I get any relief from pushing the Avastin back three weeks.
I wanted to try a process of elimination so I could maybe try and work out if it is the Avastin causing it. My Oncologist said it may be a mix of what Chemo has done, plus Avastin, plus menopause.
Like you, i'm rarely able to sleep on my side and I have to try putting my arms in all sorts of positions to try and find positions that prevent my shoulders hurting. And like you I have to be in an elevated position; I generally have to sleep in a half sitting up position.
I'm sorry to hear about the pain and stiffness that you're experiencing with Avastin and that the medications you've tried so far don't seem to be helping.
I hope that you can get some further medical advice soon about managing the symptoms and help with finding more effective strategies. Your oncology team will be able to advise you about your treatment plan and anything that could be done to make the side effects more manageable for you.
If there's anything that we can help with, or if you'd like to talk anything through, please get in touch with our Support Service.
My Oncology already referred me to Rheumatiod and Lupus who offered steroid injections if the meds don't work, that will be my next step if pushing back the Avastin three weeks does not give me any relief.
I am 12 months ahead of you finished chemo Dec 2018then had 18 avastin which finished in March. I had terrible shoulder pain could not lift my arms up to waist height but even two months on it has significantly improved I can now just move my arms to do my bra up. I h a 've done physio exercises to try and keep me moving during Avastin but they now seem to be moving more easily. I hope this helps.
I am always confused about which side effects I have are from 3-4 years of chemo, 2 years Avastin, being 70, arthritis, or something else. My doc never seems to be sure, no matter what I ask. I have joint or maybe muscle soreness. I had hands freezing up for a few weeks, maybe a year ago. I am sorry but I forgot how it went away. I have to think. I believe it was a supplement. Or maybe one I was taking too much of.
I have Avastin every three weeks.
I think I have resolved to not being able to figure out my side effects in general. Meanwhile I have been in remission about 9 months which is the longest ever... and my doc says he thinks it's the Avastin.
I try to do every alternative I can to help tendons and joints. I exercise and found some for shoulders, but yes, oddly my shoulder soreness persists. I saw a physical therapist. It's actually fairly minor now. I do Nia, and there is a dance called Passion (niatv.fit/) which she says is for rotator cuffs, but I think maybe it's helping. It is super gentle on knees.
My knees got remarkably better very suddenly and I have no idea why. Maybe the knees was the chemo effects. Oh my knee doc said my knees are a mess! I have so much wrong with them. But he also confirmed just because you have bone on bone, doesn't mean it hurts. Mine hurts a little I guess. I lost about 120 pounds in the beginning of this journey to get healthy for the long road. But my knees never used to hurt before all this, and not really now so much... just a little if I walk all day. 30 minute walks are a bit hard for me, but that's what I do.
One thing I noticed (and my doc confirmed) is side effects can come and go... just for no reason.
I do have an appointment with a knee and shoulder specialist in a month though. I will try to remember to report back!
Anyway, that's how I deal with it all, if that helps you?
I take Chinese "Solitary Hermit", UCII Collagen, ALA, Tumeric, Reishi (forgot what that's for). I think that's it.
Please let me know if I can help in any other way!
Thanks so much for your response, Carol. I will have to take a look at this Nia .. sounds good. I am taking Turmeric tablets and I also include fresh root turmeric in my carrot juice.
It sounds like you are very proactive in trying to be as active as you can. I'm glad to hear that your knees are not as painful as they were.
Yes, please do let me know how you get on at your knee and shoulder specialist in a months time. Hope they are able to find treatments to help you.
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I hope yours is resolved too!
Avastin and itching
Is anyone on Avastin with high blood pressure - does the bp eventually level out or keep going up and if so how quickly?
1 year since my operation so celebrated on holiday's 🙌🌄 🇬🇷
Two ailments?!
