Avastin

[chrissy88]

Hi all. Does anyone having Avastin only suffer from severe muscle pains?

Many thanks. Chrissy. Xxxxx

[nork2]

Hi Chrissy. Yes when I was Avastin I had quite bad aches/pains around my shoulders, neck and back. Think it is quite common.

All the best, Lynne xxxx

[chrissy88 in reply to nork2]

Thanks Lynne. Xxx

[Hilsuk]

Hi Chrissy, how are you doing ? I finished 18 treatments 3 months ago, and had terrible muscle and tendon pains which got worse through the treatment and afterwards, they now seem to be easing , but needed physio for terrible back spasms causing sciatica and sever achilles tendon problems which still make me hobble at times ! I was told by oncologist Sarah Blagdon at a meeting that these are very common, get worse as treatment continues but do go 3-6 months after treatment. Good luck xxx

[chrissy88 in reply to Hilsuk]

Hi Hilary. Good to hear from you and hope things are going well?

I'm on no 13 now. Already had a neck problem before all this but it seems to have gone to another level affecting other muscles around neck and back. Reversing becoming a real problem. Had muscle spasms in back too although that seems to have resolved. Also got a frozen shoulder to boot! It's all very wearing. Can't win can you!! Don't really want to stop avastin as that's too scary

The team say they are not aware of muscle problems Had an Mri on spine but that was ok other than slight degeneration at top of spine. Had 4 sessions physio after 3 month wait and 10 lots accupuncture and twice to osteopath.

Aghhhh!!! To care and tanks for reply. Xxxxxxx

[AndreaW]

Hi Chrissy, yes I do! My oncologist told me that she didn't think it was one of the symptoms. I actually thought it was symptoms of the menopause but it seems too intense to be that. I'm seeing her today so I will mention it again. I currently take paracetamol fairly regularly and ibuprofen if it's particularly bad. I'll let you know what she says today x

[chrissy88 in reply to AndreaW]

Thanks Andre. Good to share knowledge. Xxxxxx

[AndreaW in reply to chrissy88]

Hi Chrissy, my onc said the best thing to do is to take paracetamol regularly/every 4 hours. She'd said it's the 'cleanest' painkiller you can take and it has anti inflammatory properties (I never knew that, I thought that was just ibuprofen) . So I'm going to make sure I take it properly and see if there's any difference in a week or two. Still no confirmation that Avastin can actually cause joint pain though. I forgot to mention earlier that I get pains in my legs and my heels(?) and my shoulders. I've decided I can cope with it especially when compared to chemo, so onwards and upwards and keeping positive! Oh and I hardly notice the pain when I've had wine - funny that isn't it? Take care, Andrea x

[chrissy88 in reply to AndreaW]

Thanks for the update Andrea. My physio has just suggested using paracetamol continually as well so I will be trying that to see if it makes a difference instead of dipping in and out. She is baffled by it and said there should be an improvement by now so she suspects avastin. Beginning to think it's something to put up with but reversing and junctions are really a problem now. But your right it's certainly leagues better than chemo so that's that.

like the wine benefits too. You sound like my kinda girl!! All the best. Xxxxxx

[Izzystep]

Had 14 doses of Avastin and can't say I had any side effects, apart from a constant runny nose!! My oncologist said that this wasn't a known side effect of Avastin, maybe this is the case with muscle pain.

Good luck, let's hope your onc can sort you out.

Have a good Christmas, irene xxxx

[chrissy88 in reply to Izzystep]

Thanks for reply Irene. Xxxxx

[Hidden]

Well the runny nose and sinus problems are a definite yes. I have sinus problems anyway which the Avastin worsens. So I stop my spray for a while and it calms down but have the husky voice as well. I get tired all of a sudden, I do have aches and pains. I also have a problem with my right foot but not enough to complain about it. When it plays up, I wear a support. Yes it is true that Avastin can build up in your system and then cause you to flatten out, my work doctor did a stint in oncology and she gave me that information. I have been on Avastin for 13 months now every three weeks. So far no major problems like dvt or protein in urine or blood pressure. We are all different and we all react differently to different treatments. I was given print outs about side effects from Macmillan website and it does include quite a lot of side effects. Really as it is being used more, its only as we complain the docs become aware of the side effects. Hope that helps

[chrissy88 in reply to Hidden]

Thanks Suzuki. I also have a husky voice now and then. Thanks for replying and sharing that info it really helps. Xxxxxx

[Hidden in reply to chrissy88]

I am in a choir for cancer patients and families here in Cork and my voice sometimes is just hilarious but the conductor understands, it is just a fun choir, nothing serious just as well. Maybe we could jostle for being the new Nina Simone haha

[baxbird]

I'm up to number 9 cycles of Avastin, and yes you do get more aches and pains! My neck constantly feels like I've slept on it wrong if you know what I mean, and my joints freeze up if sat in ine position too long, takes me a while to get moving! The children in my class at school do enjoy seeing me trying to get up out if their small chairs!

I'm part of a trial that is recording all this info, and the trial nurses said that they are having more people mention this now

Dawn

[chrissy88 in reply to baxbird]

Yes dawn I know exactly what you mean!! That's interesting your taking part in the trial. Thanks for your info. Xxxxxxx

[baxbird in reply to chrissy88]

Hiya, just an update on this.

Saw oncologist today and talked about the aches and pains, and she was of the opinion that the aches etc are more to do with the removal of the ovaries and their associated hormones rather than the Avastin?

[Yogini01uk]

I am still on Avastin and I do have side effects but afraid to stop as I've been in remission for 15 months. My BP did rise but GP upped medication and it's now under control. I get joint and muscle pain especially in my right thumb joint. I take an anti inflammatory tablet for a short time if pain gets too bad then stop. I am also doing Avastin research so research nurses aware of problems. I have it every three weeks and I had my last treatment on Thursday and I have got a sore mouth with ulcers under tongue and inside of cheek.

I still think the pros out way the cons. X

[chrissy88 in reply to Yogini01uk]

Thanks for that yogi. Tk care xxxxxxx

[maggie11]

I would suggest to try taking a good absorbable magnesium, maybe a liquid as magnesium relaxes muscles, helps with sleep and general relaxation. If oncologist is happy it may help as magnesium also helps with cramps.

[chrissy88 in reply to maggie11]

Thanks for that tip Maggie. I have read about that and asked one of the doctors on the team. She said I doubt very much that you have magnesium deficiency so it put me off a bit. But hey ho it won't harm will it. Many tnks. Xxxx

[Hidden]

YES, i get up from the bed, the table, couch like a old lady - I'm 42 so thats a bit premature for me !!

Im in pain when i move from the still position to the active one. I know its from Avastin as i had not this paint before chemo, I'm off Avastin for 8 weeks so i will let you know if i get less pain as time goes on.

good luck

Sinead

[chrissy88 in reply to Hidden]

Thanks sinead. Yes I feel as I've aged prematurely as well! Wasn't quite ready for all this. Xxxxxx

[baxbird in reply to Hidden]

Thats me exactly, old before my time!

I spoke to my oncologist today and she was if the opinion that it's more to do with the removal of the ovaries than side effects of Avastin, but I didn't have any aches etc after surgery, this started months after surgery when I had been in Avastin for a couple of minths

[ketchup in reply to baxbird]

Your oncologist may have a point as I have many of the aches and pains that you ladies on Avastin have but I have only had chemotherapy. I struggle to get out of a chair and walking down stairs first thing in a morning is agony. My aches started many months after first line and surgery ?!?!? K x

[Hidden]

Actually, talking about magnesium it helps if you put epsom salts in your bath water about half a cup, it has magnesium and if you stay in the bath for twenty minutes, the magnesium is absorbed into the body through your skin. Even bathing your feet in a basin of warm water with the epsom salts for 20 mins is a help

[chrissy88 in reply to Hidden]

Thanks Suzuki. That sounds good. Xxxxxxx

[Wood25worm]

Have finished Avastin and can confirm really bad aches and pains so much so my dose was reduced - which helped. My onc said it was a side effect of the Avastin and also low mood which I also had. Mood improved with reduced dose and is fine now I have stopped. Aches slowly getting better. Oh and did anyone else get sore feet and lots of hard skin?? Sue x

[chrissy88 in reply to Wood25worm]

Thanks sue that's interesting.

Haven't experienced hard skin but had sore feet after chemo.

Best if luck. Xx

[LesleyGreengran]

I get some muscle pains in calves but they are relieved by walking though the epsom salts seems a good idea.

[chrissy88 in reply to LesleyGreengran]

Thanks Lesley. Xxxx