Hi. I just had a question with others on avastin about joint pain muscle pain and exhaustion. My chemo treatment ended 10 months ago and after trying opdivo I was put on avastin only to treat the ovarian cancer that progressed while under chemo.
I am finding that I have some very strange side effects that only showed up after I had taken my second treatment of avastin and have intensified as I continued to take a baston. I'm wondering if anyone else has experienced some of the following:
Joint pain, just being very tired, muscle tightness and nodding, muscle cramping, inflammation of muscles,and just feeling kind of like I have the flu, and after my avastin treatment which happens every 3 weeks, I seem to just feel like I have a chronic sinus infection or nasal infection.
If so what are you doing to treat that.?
The avastin is working but I had kind of hoped that with getting used to it I might return to work but there's just no way I can do that at the moment and I didn't know if it would get any better.
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Natsmb
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I've been on Avastin since April 2018 and experience some similar side effects, but not all of what you describe.
For me, it's mostly excessive tiredness (on Avastin day and the day after, I can't work at all due to being so sleepy; the other days I'm just tired) and increased blood pressure (kept in check with meds i.e. Ramipril).
Some lesser side effects include more frequent muscle cramping.
It's a challenge sitting in big city stop-and-go traffic , in a car with a heavy going clutch, and experience constant cramping in one foot or the other... as happened to me (again) last week. The other drivers must have wondered about my facial expressions. Probably thought I was suffering from a severe case of road rage .
Also, I seem to be very prone to infections of all kinds. Bladder infections, bronchitis, cold/flu etc hardly ever recede anymore.
But I guess it's all good as long as I can dodge any gastrointestinal issues and my tumour marker continues to go down. Aside from vitamins and the blood pressure meds I'm not taking anything regularly to combat those side effects, at the moment. The odd Paracetamol or Ibuprofen, or a one-off topical Antibiotic for bladder infection are applied as needed.
I don't know if there is anything else you can do other than staying in touch with your oncologist and keeping a close eye on your side effects. In the end, only you can decide if/when it becomes too much trouble. Hope your medical team can provide you with effective relief for the joint paint though. All the best. Maus
Yes. I needed to know that. I was wondering if it was all in my head! I am tired ALL-THE-TIME. Unfortunately for me, I have the sleepiness, the chronic cold and some REALLY severe cramping. It seems like instead of my body picking and choosing a side effect, it just decided to take all of them. My blood pressure is finally stabilizing with the blood pressure meds. Question for you- when you cramp up- are the cramps more like Charlie horse cramps or something else. I am asking because a cramp peculiar to me through this treatment seems to be preceded by a sudden hot flash and then a really tight burning cramp particularly through whatever muscle I am using at the time. I actually find that there are really sensitive "lumpy' spots when I try to massage them out. Are your's anything like that?
Hi, I had Avastin between May last year and January this year. I made the decision to stop as I was fed up with the chemo regime and wanted some “normality “. I too had (still have) constant stuffy nose with nose bleeds, high blood pressure, cramp in my feet and legs at night and more recently back and hip pain. I’m just hoping all of this doesn’t hang around for too long.
I have a PET scan in a few weeks and keeping everything crossed all will be ok.
I think it’s going to take a while to be free if the after effects of both chemo and Avastin but in the meantime am counting my blessings as I’m still here 😉
Wow I'm very sorry. I hope your PET scan comes back clean. This is a maintenance drug for me and it is doing its job. At the expense of just living normally. You don't have to answer this of course, asking for myself but if you didn't want to answer, were you able to work full-time at some point through this treatment? I was on chemotherapy last summer and then finally I'm taking this and I still haven't been able to my normal life of cleaning the house and just living. I'm wondering if this will work itself out eventually.The nosebleeds and chronic nasal issues are a pain but it's really frustrating that I cannot sit or write or type (thank goodness for voice to text features!) or stand for a sustained length of time. And by sustained I mean about 20 minutes at the most and then I have to kind of move around. But it is very helpful to have people share their experience with it because I was being told by my doctor that this is highly unusual and must be something else. And they have never come across it and most people did really well and didn't have all these issues but I thought for sure somebody else out there has to have come across this. If they didn't then I was starting to worry that maybe this was the symptoms of something completely different. Anyway thank you for sharing. It's been helpful.
Hi I trialled Avastin back in 2008 and yes everything you are describing is exactly what I had. I found I was able to work fulltime through treatment so it sounds like your symptoms maybe more sever than I experienced though I did take cocodamol and tramadol to ease the pains. The sinus issue continued for about 6 months after completion of the trial. I hope things improve for you and it continues to work for you xx Kathy xx
What do cocodamol and tramadol treat specifically in regards to symptoms? Do you mind my asking what you were taking avastin for? I was looking at maybe trying to work but being a school teacher I need to be able to work 8-10 hours at a time on my feet and I currently have just enough energy to take out the trash before I collapse. I'm hoping it gets better. It's been over 6 months.
I found all of the above when taking Avastin, but note you don't mention the bloody nose! I know that I wouldn't have been able to work, and generally just gave into the exhaustion and joint pain.
I found that exercise in the form of walking helped when I felt able, also Epsom salts baths to help ease joints and muscles before bed. Once you stop the Avastin, your body should gradually recover.
Yes on avastin got muscle tightness and pain and extreme fatigue. Dry nose one day then sinus nose another. Bladder burning like cystitis but checked four times no infection but so.painful. skin in personal areas all Raw. Tried blepanthan gentlemen aloe Vera gel.zinc and castor oil. Combination of above all exhausting. I sympathize
I have just completed my 18th infusion of Avastin.I have done well on it but the last two infusions have been difficult in regards to muscles problems and extreme stiffness.My GP said I had sciatica but for 4 days I could barely walk as the pain was so extreme.
I visited a Physio who was very helpful.He confirmed that my body was very stiff and to avoid sitting for more than 20 mins at any one time.Warmth was another suggestion e.g hot baths, microwave bags, hot water bottles etc and walking to ease the stiffness.I feel so much better now but mostly the pain is at night.Good luck with the treatment. Ann x
What you're describing is exactly what's going on! And I am now taking hot baths which I think does help. One of my biggest complaints is that I can't sit for longer than about 20 minutes or it really starts to hurt. In a way I'm totally relieved to find out that you were dealing with"sciatica" too. But the pharmacist didn't know what it could be and doctor was telling me it was probably sciatica too but having never had that problem and it's not consistent except when I take avastin of course it's a relief to know that if it's avastin related it'll go away if I'm no longer taking it. I really hate the sciatic issue. I have since called up Genentech and made not a complaint but a very clear documentation of every symptom I've had and asked them to put it in there notes about avastin because it's not there. They were actually very happy to hear from me about the details. Hopefully it'll help somebody else. I have been dealing with this since September and kept thinking all along it was more tumors or surgery-related. I'm glad I found this site!
Initially I didn't even consider the Avastin as mine came on suddenly after dose 17.Similar to you I had never experienced sciatica or indeed any kind of back problem.
I was told the Avastin was cumulative but now I have finished it I do hope the pain goes!
Hello Natsmb. I can fully empathise here. After stage 4a serous ovarian cancer, chemo, surgery then more chemo I was put on Avastin. The pain has been excrutiating.
The pain is at last managed and under control thanks to Oramorph, Buprenorphine 10mcg/hr patch and steroids with regular Co codamol 30/500 mg and the occasional Ibuprofen 400 mg. However, constipation is a battle!
Oh? yeah, I just thought the mouth sores were because I was eating weird food so I stopped eating food but they were still there and I just wasn't sure.my tongue pops up these weird blisters shortly after the treatment now that I'm thinking about it. They're not so severe that it was a major issue but I had stopped eating several foods thinking I was allergic to them. Maybe I'm not .
I had all those side effects plus the rare one of osteonecrosis of the jaw. Yoga, reiki , allergy pills, have all worked for me. I have been switched to Rubraca. Will start that soon.
May I ask what you were taking the avastin for? And I would love to know if the new medicine is working when you do take it. Would you mind keeping me posted?
I was taking it for maintenance chemo. I had eight Carbo/Taxol/Avastin/Nuelasta chemos and surgery before that. Runbaca will start as soon as dr can get approval to use it on me. Forgot to add that Avastin gave me heart palpitations too.
It was the side effects of losing pieces of my jawbone. The Avastin doesn't appear to have stopped working but I won't know until the next CA125 test. The doctor gave me a ten week break because I also had high creatine values. Everything healed after ten weeks. My CA125 went down. They started Avastin again. Two infusions later my bone loss began again and my CA125 went up a bit. To 13. I don't know what it was before that.
Before the surgery I had heart palpatations and bloody noses. After the surgery no bloody noses. It was when I had three maintenance chemos of just Avastin that my kidney values went up then the bone loss began. Avastin makes healing very slow so my gums got inflamed, we dont know why, and the Avastin kept them from healing. I had a CT scan done of my jaw but it showed a normal blood supply. I am Just at my 6 months since full chemo ended. I have many pains and aches. I am also tired and out of breathe quickly. I dont have the endurance i used to.
I get a cortisone shot every couple months in my left knee because the Nuelasta also caused inflammation. I can't do jogging or high impact aerobics anymore. Even spin hurt my knee. I started taking reishi mushroom, ginger and turmeric last week to help with inflammation. Fish oil stopped working years ago for me.
Well, there's another gal taking avastin and since she started taking it she's also had a whole lot of sinus problems and chronic nasal infections. I think that if the doctors haven't come across it before they don't think it happens. If you want my opinion, I'm sure it's the avastin. I'm always getting bloody noses and chronically sneezing that I never used to do. Bending over and stretching is a nightmare because my head explodes. And the worst symptoms are always right after the treatment. So thank you for telling me. Yes it helps to know.
I was really tired all the time. I also suffered from joint stiffness, especially in the hips and this got worse as time went on. It took me some time to get out of bed whenever I woke up. Not so much fun when you have an erratic and explosive bowel. Shuffling across the bedroom floor on my knees while keeping my bum clenched - should be an Olympic sport! I stopped taking it in January and the hip stiffness took about a month to wear off. It's not entirely gone but is minimal now. The tiredness wore off as well, if that is any help.
Oh my gosh. You cracked me up with that Olympic sport comment! This helps to know that you had that stiffness in the morning. I do too although it doesn't seem to be quite the extent you had it. But it does take me a couple hours to get moving. I'm considering taking a break for about six weeks or two sessions. I'll look for the tiredness to go away. If it does then at least I know it's just medicine related.
Hi, yes these are definitely side effects of Avastin. I was flying after my first lot of chemo. back in 2011. But when I had a reacurrence in 2013 I was put on Avastin after chemotherapy and the side effects are really awful. There is no way I could return to work as I struggle to do even light household chores. So don't listen to anyone who tells you otherwise, listen to your body and take care of yourself!💕
I definitely appreciate the confirmation. Lighthouse tours is about right. do I take a shower today? Or do I vacuum the floor? Do I make dinner and leave the dishes till three days later when I can wash them or do I eat crappy take out! When I was first given the option of avastin which, by the way, I think is still the better option than the one I was given, it was kind of presented as, "few side effects, mostly people really have no problems with it, some people that makes tired but mostly people are doing great on it and most of those side effects go to other people who already have severe health issues outside of cancer anyway".
I'm sure that a great number of patients have no problems with it but just not us.!
I’ve been on Avastin almost 3 years. The joint and muscle pain subsided after the first year, and now my sinuses are dry. However my kidneys and blood pressure have not been happy the last 2 reatments so I love had to skip one and then delay the last one. I may be on the end of taking this maintenance treatment, unless there is something my doctor can give me for it. Headaches have gotten worse over the last year so I’m on a monthly shot to keep the migraine away and it’s working great.
I'm happy you let me know that things got better after a while. If I end up being on this for a while it's nice to know it be stopped hurting. Hope your blood pressure comes down.
I’m on a similar route to others with regards to chemo, surgery and chemo. I’ve now had 10 of 18 Avastin treatments. I too get very tired but now sure how much of that is still chemo side effects but my biggest problem is pain in my right heal, I get achy joints elsewhere but my heal is by far the worst with a burning like pain. My gp prescribed a stronger pain relief but the only thing I find that helps in paracetamol e times a day.
Hi Natsmb. I've been off-line for a while & just catching up. I'm surprised to see so many side-effects reported for avastin. I was diagnosed 3C OC 7.5 years ago. I'm in remission from 2nd line and have been so for > 5 years - thanks to avastin - as maintenance (3-weekly), following 6 months of carbo/caelyx/avastin.
I see you have so many replies, you won't need more but just felt I had to speak up for avastin: it only makes me tired on the day of the infusion and I think that's only cos I have to get up earlier that morning to travel to the hospital. I'm fine after that. It gives me high blood pressure which I have to take medication for as the trial won't allow high blood pressure. I get a runny nose, mostly in the morning and when I eat but that's all. I think my sneezing may be caused by avastin: I had a slight allergy prior to starting avastin.
I don't seem to have any of the joint pains etc but I have had some foot problems, in that the corns on my feet, which I've had since my teens/20s, have grown larger & become uncomfortable. I'm 72 now, so unsure whether to blame avastin or age for that one. But I DO find that having COOL feet makes me able to work for longer than if my feet are hot (I live in Australia, so summers are hot).
I've barely had a cold since I've been on it.
Can you try having the avastin dose reduced? When I was on caelyx, the side-effects became really unbearable, so my onc reduced the dose by 10% which reduced the side-effects enough for me to remain on it.
For the record, I'm well monitored: bloods analysed every 3 weeks, urine tested, CT scan every 3 months. And the trials dept, ask me many questions every 3 weeks.
The side-effects of caelyx can last for 2 years, so it's always possible that some people taking maintenance avastin and attributing their side-effects to avastin, could in fact still have caelyx side-effects.
I think you're in America, where you have a different name for caelyx (maybe doxil).
We are all complex beings and our systems react differently. I am very grateful for the 5 years+ remission that avastin has given me. I hope you'll be able to continue teaching. Best wishes. Pauline.
Thank you for letting me know. I was on first line chemotherapy carboplatin taxol last February. then I never responded so they took me off and put me on something called off of Devo which is primarily used for lung cancer. I did not respond to that either. That's when I was put on avastin. None of these side effects started till I had completed two rounds of avastin. The more I took avastin the worse they got. I could ask them to shrink the dose. In fact they had just upped it a bit because I had gained a little bit of weight. By that I mean 4 pounds
I was thinking that it could have something to do with the tax all but the particular problems I'm feeling or not so I don't know. I've got something that deals with the inflammation and I am very selective with my diet at the moment hoping that takes care of it. I've noticed that I seem to flare up quite a bit after eating something sugar. I hope I single handle on this because it is helping and I do want to get back into remission if I can. Actually I should say just get into remission at all because I've never actually been in remission since I had my hysterectomy. Thanks for sharing because it's good to know that yours work that long. That's my hope.
As far as the exhaustion goes I really do not understand if it's avastin or so related to Mike email. The other day I tried to mop my floor which is a tiny kitchen floor. It wiped me out and for three days my arm muscles that I used with the mop eggs and hurt so bad I thought I tore the muscle.
In your experience is that something that's happened with your original chemo?
Iam reading this post 2 years on from it and have found it so very helpful. Having had a bad day yesterday with just feeling plain 'rotten' tired and aches and pains everywhere, sore nose, tiredness questioning wether I can carry on with 12 more Avastin treatments Iam in line to have (I've had 6) I am comforted to read so many replys detailing the same. My biggest worry had been I'm feeling like this because the disease is still doing it's worsening work. (My most recent scan showed that not to be the case thankfully) I will carry on ,it has taken months to get my blood pressure under control but GP happy with that although to get random high readings it is mostly controlled. Thanks for this post and I hope 2 years on you are doing well.
Oh goodness. I'm sorry to hear that you're so miserable. I understand for sure. are you getting your treatments every 3 weeks? I'm just curious. If you have 12 more days, rounds, cycles etc. And it's decreasing your numbers and giving you hope, I'm sure you'll be able to get through this patch. I had to stop my treatment this past July. The number one reason was that it had stopped stabilizing the disease so I realized other than some slowing it down, it was definitely not worth slowing down at this point because I was in quite a bit of discomfort and pain from the avastin treatment. I am still dealing with some of those side effects but it could just be a residual carryover from the summer! Feel free to send me a message anytime. I doubt I'm much help but sometimes it just helps to know your validated.
Thank you. My 125 had increased twice so the did a CT scan which couldn't be done with full contrast as they say they have no facility to sterelise and prepare the stuff you have to drink. My confidence in that scan as giving the whole picture is limited. I didn't have 125 checked before last treatment as I had ct scan on Tuesday then results and treatment on the Thursday so they said I didn't need it checking. To be going through the side effects of Avastin with nothing concrete that it's working is hard. I've decided to insist on an oncology appointment to discuss this if 125 hasn't reduced on next test. As that will be 3 rises in a row. I know 125 can be affected by other things so it's not used on it's own however I asked the trials nurse could the increase from at its lowest 36 to 57 to 100 be anything other than cancer activity she said no. Then went onto wishing me a happy new year at the end of the call!! (It was new years eve) I'm normally positive but finding that hard.
To deal with some of those aches and pains I did go on Percocet. I also took Lyrica. Between those two I was able to mitigate the inflammation and some of the flu achy feeling. At first I tried to limit it to 10 mg of Percocet a day. But with the Avastin, that toxic stuff they stick in you builds up. Some people said that their body became accustomed to it after three or four cycles but mine never did. So I requested to increase my painkiller dose and that helped. At some point though the stuffed up hurting nose and the severe muscle tightness and cramping could not be addressed by the Percocet any longer or just about anything else to be honest. Even morphine. I would maybe not feel burning pain and achy but my muscles were constantly tight, miserable, and sore, and I felt rundown all the time after about a year of being on it. My numbers called steadily upward might drop back the next cycle then popped on up. It was a two steps forward towards cancer and one step back towards health kind of thing. I found lots of ladies who didn't have any of those problems I wished my body was one of them! But, I found just as many if not more who had very similar side effects and including irritated bowel syndrome which turned out to be a big problem for me but I only just started to (sort of) recover from that. And it's been a good seven months. also it was the avastin and not cancer that created the fluid buildup in my lungs and my heart now that I'm not on anything, of course everything is cancer related. At any rate, if you feel that it is even moderately successful in holding your disease study and you would like to be able to stay on as long as possible, talk to your doctor about painkillers or increasing the painkillers if you are taking me at this time.And I just recall this now also, avastin did have an impact on my bowel movements. Diarrhea versus constipation. It was very frustrating. I ended up using stool softeners and miralax on a regular basis. I guess you got to do what you got to do!
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