I am on my 8th infusion of Avastin and I have not managed to figure out how to manage the joint pain. Currently taking Naproxen and Massaging magnesium oil into my joints/muscles. My shoulders, hips and lower back in particular are giving me the most trouble. I constantly feel like I’m about to get frozen shoulder. I can’t lift anything without keeping my arms tucked in close to my body. I can’t stretch my arms out without experiencing pain. Often when trying to sleep, I cannot find a comfortable position to put my arms in where my shoulders won’t hurt.
Both sides of my groin hurt, especially when standing still on the spot or lying in bed. Putting a couple of pillows under my knees to raise my legs sometimes helps, but not always.
I also get slight stiffness and pain in my ankles, the arch of my feet and in my fingers.
Any tips would be very much appreciated.
Lisa xx
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Meridian14
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Oh dear! Know that feeling! I have RA ( before OC) and the way Avastin works is very similar. Although it sounds counter intuitive very gentle exercise can help... maybe get an NHS physio appointment for advice. Rest... I mean real rest is also helpful, as is heat- hot bath or shower. I hate cold but some find that alternate heat/cold is good. You can double up paracetamol with naproxen to give added pain relief. Good luck xx
Thanks Lyndy. Yep, I'm doing gentle exercise too and will be seeing the physio in a few days so i will bring it up. I could probably do with having more hot baths. I sometimes use a hot water bottle across my pelvis which can help the groin aches. Thanks again. x
The acuteness of your shoulder pain makes me wonder whether there may may be something else going on unrelated or additional to your Avastin side effects.
I had awful shoulder pain whilst having chemo and was referred to physiotherapy by my GP. I was diagnosed with a muscular problem and treated with manipulation and acupuncture. It was fantastic. The pain disappeared. Every so often I get a twinge and use the home stretching exercises I was given which resolve the problem.
Apparently this type of muscular is not uncommon with cancer but I learnt I did not have to put up with it.
I’ve not had Avastin but had lots of joint pain after Carbo/taxol. I have hot baths with Epsom salts and it helped me. Might be worth a try. There are loads of different types in chemists with added things like lavender.
Reading your post, is like reading my story! I did have shoulder pain before I knew I had cancer, however Avastin seems to have made it worse. I took Naproxen before cancer to treat the pain. The Christie strongly recommended I stopped taking it, whilst receiving Avastin as it was dangerous, so please make sure your doctor knows your taking Naproxen!
Going through treatment with Avastin I get to the point with my joints, I have to sleep in a chair, so I don’t roll onto my shoulders during the night.
My doctor does prescribed Dexamethasone, but only if I’m screaming at him, for some pain free time! I only have these for 2 weeks and I feel I could run a marathon! I understand not to go mad, but it’s amazing to feel normal and really picks my mood up!
Thanks Georgiatech, I will double check about the Naproxen. I’m not taking it a lot, just sometimes before bed, to take the edge off. But I will double check on whether I should be taking it or not. Acute Oncology advised me to try it.... I did tell them I was receiving avastin.
Yours must be extremely uncomfortable if you’re having to sleep in a seated upright position.
I started doing very gentle exercises with very light dumbbells (2kg). Bicep curls and shoulder press... only when my shoulders feel they can take it, but really slowly and gently. This seems to have helped a little. It doesn’t help every day - but some.
Dexamethasone sounds fab! I will have to ask about it.
Hi have you tried acupuncture? It got me through the taxol pains without meds, I highly recommend it. It can be done without needles, so no infection risk, and fewer side effects.
Just when I think I am suffering alone I read a post from you and others and feel less alone! I too am on my 8th infusion of Avastin and finally started physical therapy for my right shoulder. My onc doesn’t seem to acknowledge the relationship between the two but I definitely do now! It has affected my sleep and trying to accomplish every day tasks at home. The therapy (after 4 visits) is beginning to help. I am not supposed to take ibuprofen as it might tax my liver and kidneys; already being taxed by the Avastin. My GP prescribed Celebrex (in the US) since it is easier on the stomach. Really hasn’t done much good but worth continuing to try to reduce the inflammation. I also sleep with a heating pad on my shoulder at night to help keep the muscles loose. GP says cortisone injection after PT could be next step.
Meridian, I hope you find some relief soon. Keep talking with your onc providers. They need to better recognize our aches and pains when going through treatments. The pain is real!!
You too? It took my doctor months to acknowledge that what I was dealing with was avastin related and not something else. So aggravating. after months of physical therapy and seeing a rheumatologist and a pulmonologist and a cardiologist and a nutritionist and blah blah blah, and what really made the difference was getting three more patients that he put on avastin that had the same complaints as my own. Anyway he's made some changes to the protocol and it's helped a bit. The shoulder issue for me was an inflammation nerve issue I think. Yes, it was pretty severe and particularly in my right shoulder but my left shoulder was the same anyway. like I said above I got rid of certain foods that I found seems to aggravate it and it's been much different. If I accidentally eat those foods I can tell. I start to feel horrible. also, it's possible that since I've been on it for almost a year-and-a-half that maybe the shoulder pain is just dissipated overtime too.
It drives me bonkers that since it's not something that it's in their protocol, doctors have such a hard time accepting that we're dealing with these nasty side effects.
I actually called up genetech and ask to speak to somebody in the customer service department and insisted that they take my complaint. They did and I also told them that I was going to contact the food and drug administration and let the food and drug administration know that I had wanted to have these complaints officially recorded. that way they knew that I was expecting them to at least keep them on the file so that if there was other complaints they might have sufficient information to give the doctors so the doctors can have this one they're suggesting the treatment to patients. Not that I would undo that treatment because it is changing things and extended my life but I'd still would like to know and I also wouldn't like to have to fight every doctor for treatment for the symptoms they don't think are there and can't be real and can't be associated with avastin when it's true that they are.
Maybe if genetech updated the symptoms list doctors might have a little more information for their patients
Hi Natsmb, it surprises me that this is not common knowledge to genetech and dr’s/oncologists seeing as so many of us suffer with this shoulder pain whilst on Avastin.
You would think wouldn't you! But at the end of the day, they're a company out to make money and they've done all the required research so they're just going to do the steps that they need to and probably not do anything that might foot there updated trials and medication changes at risk if it costs a lot.
My oncology nurse thinks that it's possible that they have altered some of the ingredients using molecularly "exact" synthetic substitutes. She said when she was in training regarding these molecular Lee similar structured medicines, that she was repeatedly informed to stress to the patient that there was absolutely no difference in the drug product and it would be exactly the same as before.
She thought at the time that that sounded like wishful thinking and since then she said she has come across many many patients who had no past adverse reactions with the medicine and then shortly after taking the " new but not different" drug with the synthetic molecular base that a great majority of her patients had different side effects and they never had before.
I personally have always had problems with the avastin. But, the doctors and nurses that I talked with who had been giving this drug for all the years it's been available on the market are perplexed that people should be having such a terrible reaction to it now because they never did before.
with the nurses when I bring it up there very willing and open to talk. With the doctors, I get sometimes disbelief sometimes tolerance and a few smirks. Thank goodness that my oncologist is willing to accept it even if he doesn't really think that it's legitimate. I think he has started to come around because it seems there's several patients now that he's never had this problem with that are now having this problem.
Thank you, Twinning. Glad to hear that your physio is starting to help. Hope it continues to do so. Good tip about the heat pad. I do use a hot water bottle across my pelvis to help with the groin pains, but not tried the heat pad on my shoulder. My night sweats are a real hassle and it looks like I may have endure more each night, what with hot water bottles and heat pads - Erk!
I started taking Tumeric and dark cherry. Both helped a ton. Ibuprofen worked great just be kind to your kidneys. I was on Avastin for 3 years until my Kidneys said no more..
Hi Amyjo. I’m taking half a turmeric tablet every other day (future you). Some of the days that I don’t take half a tablet I squeeze fresh turmeric into my green juice or carrot juice.
I used to drink Welch’s fresh grape juice too but I haven’t bought any of late. I’m liking the sound of dark cherry. Will look into getting some. Thank you.
Hi Lisa. I have been on avastin since September of 2018. Everything you described (minus the groin pain which just sounds like an extended version of the same thing), is exactly what I have gone through. Frozen shoulder, stiffness achy joints- all of it. And more.
Avastin, in my experience has been effective in stabilizing the disease (stage 4 clear cell ovarian carcinoma). But I have to say the side effects have been numerous and debilitating in many ways. I had to stop work. I still cannot work.
Here is what has made the biggest difference for me:
First, (and this is not easy and it's not to say it will work for you but it did work for me), I noticed the worst shoulder stiffness and joint pain came after eating certain foods so I had to cut out quite a number of food items that are really liked eating that were major part of my diet. Second, I now take Percocet as needed. Very small doses but it helps. Third, my doctor changed the protocol for avastin.
FOODS:
Foods I had not had any problems with the for avastin suddenly became nightmares. My doctor suspects it's because Avastin is an immune response enhancer so my body is also responding to foods that I might have had mild I notice for reactions to in the past.
For myself, it turned out that I had to get rid of all sugars and several kinds of starches. Anything with a high glycemic index seems to flare up that stiffness that you're talking about in shoulders and toes and feed in arches and everywhere else.
I stopped eating these foods after I noticed that these stiff shoulder and joint pain type symptoms increased tenfold after eating. I finally narrowed down the foods that I can eat. For me, the shoulder stiffness, joint pain and nerve sensations have eased off because of the changing my diet. I don't know if that would be the same for you but it might be worth trying to cut out foods and see if it helps. if you want me to explain more about but I ended up getting rid of in my diet I can tell you. It's a long story.
PAINKILLERS: along with the shoulder stiffness which started up almost immediately was this dull, cloggy, achy, painful, I've-been- hit- by-a-truck, buzzy, foggy, fatigueing, I-just-kind-of-ache-everywhere malaise. It became more intense the longer I took avastin, and it increased with activity. I would have to rest immediately, take hot baths, etc. That's what the painkillers helped with a lot. I hope that you don't end up feeling like that but if you do, maybe, if you haven't already talk to doctor about it, percocet or some other mild painkiller will help. I found that Ibuprofen and over the counter drugs did not seem to do the job. I also found that not all Percocets are equal and not all opioids are equal. I had to try several before I found one that did not cuss me more issues than it resolved. Long story on that one so if you need to know more just ask me.
CHANGE IN PROTOCOL: my doctor has only recently found several other patients he's been giving invest into that I've had very similar symptoms to yours and mine. Apparently this is newer or at least it's dramatic enough that patients are now bringing it to their doctors because he was not sure how to deal with it. ( I suspect that genetech, the company that produces avastin, has molecularly changed the ingredients in the product over the last years. Supposedly they haven't, and FDA says that if its molecularly the same they're not required to say that anything has changed but the nurses and I have had a discussion about this )
Anyway, now when I go in for an infusion, I am treated with an infusion of half a dose of Benadryl, dexamethasone, and they have increased my avastin infusion from half an hour to an hour to give my body time to respond. I would say that this has cut down a fair amount on the muscular pain and some of the nerve pain and has given me back a little more energy as a rule. It's not completely resolved but I feel like I have a little bit better quality of life than I did before.
Now I am just starting metformin as a supplement to the treatment. Supposedly this is a newer thing with ovarian clear cell but it's supposed to have an increase in the success of the reduction of tumors in a nice percentage of patients.
anyway, I hope all this helps. I'm so sorry what you're going through. I know it is absolutely 100% miserable.
Natsmb, thank you for sharing your experiences, tips and what seems to be working for you. Interesting about food types. I will start to try a process of elimination and see how I go. Thanks for your informative response. All the best x
This may be a long shot, but: your symptoms, and where you feel the joint pains, plus sweats sound quite like a condition called Polymyalgia Rheumetica (PMR>) It is an autoimmune disease that is also found with Giant Cell Arteitis. From their names, they seem dissimilar, but they are not. The latter is an inflammation of the temporal artery and associated smaller blood vessels, and causes irreversible sight loss.
Ihave been treated in left eye for AMD for 10 years with good resonse. Started on Avastin, then Lucentis, then Eyelea. In November/Deceber 2019, I developed wet AMD in right eye, and started on monthly injections.
In January this year I noticed low grade fever and moderateheadaches every afternoon and high fevers at night, profuse night sweating , profound fatigue, plus vision loss. I also had bronchitis.
The lab tests that tipped off the autoimmune response were high sedimentation rate (ESR) and CRP, plus anemia and weight loss. My internal medicine doctor and my rheumatologist explored a variety of autoimmune possibilities -including RA. They decided it was GCA. The treatment for that is oral prednsione - for a very long time. The physical symptom relief was within days. (Effects of long term us e are another challenge but its the only thing to arrest progression of blindness which for me in in peripheral area of "new" eye..)
There seems to be some consensus that we may have genetic presidpositionion to some autoimmune conditions, (my sister had MS), and that some event'/nfection may flip the switch to make it active. In my case it may have been bronchitis. Maybe something in the Avastin triggers anautoimmune response??? Again, it;s a long shot, but maybe your doctors would know more about this. Have you had lab work for SED rate or CRP?
Please keep posting. The richness of sharing in these ports is so welcome.
Thank you so much for your response. What you have beenthrough and are going through is very challenging and all seems quite complex. Glad to hear that you are responding well for the treatment of your sight. And it sounds as though you have a good Rheumatologist trying to figure out what is causing all the difficulties for you.
I have not heard of any of these conditions you have mentioned or the recognise the acronyms. I will now go on and do some research based on what you have said. I would not be surprised if Avastin triggers an autoimmune response. I will speak to me Oncologist and Rheumotologist about this possibility. I have not had any issues with my site and I have not suffered any fever or weight loss.
wishing you well and hoping your Rheumatologist continues to find the right treatments for you.
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