Avastin side effects..

[Luchie]

Hi to my fellow warriors, I need some advice for those of you who had or having the avastin treatment and your experience with it. I had my 4th sessions of avastin only after my 1st line chemo treatment of carbo/taxol. I was totally very lucky with the carbo/taxol. For me it was a doddle as I was very well with it. The only side effects was losing my lovely thick long hair. Which I did not mind as I know it will grow back. I heard from Tracy as I have asked her about the side effects and told me that it's the runny nose! Well I haven't experience it yet, but what I can actually feel is the muscle and joint ache. The sole of my feet is so painful, I can't walk far.. And my arms and shoulder are also very painful, but it does vary. I get so frightened and nervous as we all do with every nigly aches and pains but then it dis appear for a day and then comes back again, so does any of you lovely ladies experiencing the same aches and pains? I would love to hear from all of you.. Wishing you all well.. Xxx😘

[Suzanne333]

Hi Luchie.

I'm on avastin. I've had nine avastins now.

I'm suffering with a lot of aches and pains. My shoulders really hurt today. I had trouble dressing. Bad back ache too. I've been in bed most of the day.

It is a known side effect. It's so annoying though.

I hope you feel better soon. Xxx

[Luchie in reply to Suzanne333]

Hi Suzanne, thank you so much for your reply, It's nice to know I'm not alone with this aches & pains. I too has difficulty undressing as I can't bend my arms. How many cycles of avastin are you having? Take care.xxx

[Suzanne333 in reply to Luchie]

I'm having 18 cycles of avastin so only half way through. It is so frustrating with the aches and pains. My other half keeps telling me to straighten up as I walk bent over as I ache.

You take care. Xx

[Purple-iris]

Hi

Sorry to hear you are suffering from bad aches and pains .

Had my last chemo January, had my 6th Avastin last week and due to have 18 ( every 3 weeks for a year ) . I have been lucky so far and don't have too many aches and pains so am able to do alot of dog walking . I do stiffen up when sitting for a while and when first getting up in the morning look like a 90 year old rather than 54 year old ! . My main side affect is sinus conjestion and wake up in the middle of the night with a very dry mouth and have to clear mucus from my throat most mornings . Also get a bad headache the day after Iv and wake up with headaches often although these normally clear once I am up and about . Can also get waves of tiredness .

I did have really painful knees for a couple of weeks and oncologist told me that if you have any inflammation the Avastin can compound it as delays healing .

Make sure you update your team if the pain continues they may be able to help. Sending you best wishes with your future treatment . Love Kimx

[Luchie in reply to Purple-iris]

Thanks Kim, it seems that it does affect each an everyone of us differently, at least now I know it's the avastin effect.. Take care..xx

[Hidden]

Hi there Luchie, yes as the other ladies have said Avastin is the culprit, perhaps try warm baths with epsom salts. I finished Avastin about 20 months ago but oh boy I remember the aches and the tiredness. Sometimes the vision got blury but I am here and it was worthwile. Gentle walks and rest pace yourself

[Luchie in reply to Hidden]

Thanks I will try that, I can walk in our garden but not a long proper walks.. Since my treatment I've put on 2 stones!! So I really need to exercise.. Lol xxxx

[Hidden]

I have had 9 sessions of Avastin, the worst thing for me is the runny nose, Lately I have been having pains in muscles when I stretch or turn, but they only last for a short while, whether it is due to Avastin or just my getting old I don't know, otherwise all is OK. hope you get your pains under control. xxx Jeanette

[Luchie in reply to Hidden]

Hi Jeanette, thanks for your reply, the runny nose I have not experienced but I just finished my 4th avastin so it's a long way to go.. Just this muscle and joints aches and the sole of my feet.. I do stretch exercise on my ankle and feet first thing in the morning before I get up, and so far it's helping.. Take care..xx

[Hidden in reply to Hidden]

Neil Med rinses great for the mucky nose etc and nasosept on prescription for the soreness

[27-359]

Yes Luchie. The runny nose is inconvenient, but the aching joints can make life a misery. I have been told to take paracetamol but don't think it helps much. I have just started using a gel (Flexiseq) which is helping a lot, but is quite expensive and needs to be used twice a day. I would talk to your GP and see if they can suggest anything.

Jenny

[Luchie in reply to 27-359]

Hi Jenny, thanks for your reply, I do take paracetamol and sometimes I do combine 1paracetamol and 1 ibuprofen when it's really bad and it does help. I don't take ibuprofen as I heard from the other ladies that it can interfere with the avastin.. Take care..xxx

[Rosewall101]

Dear Luchie, thank you for posting this and I really appreciated all the replies. I was knocked over by the chemo and so have found it difficult to complain / post about Avastin. I feel so much better having finished chemo last August.

My Avastin started in November and I'm on number 8 with 10 to go. Because the treatments were separated I know what side affects are caused by what drug.

Avastin causes me a few problems. Headaches, sinus problems, dizziness but the worst is the pain. I get the worst pain in my legs (from the knees down). And worst of all is my left foot. I hobble around and seem to walk about less and less. I can't exercise or do much and find it so frustrating. I know it will pass in the end but I'm on this treatment till the end of the year. It will be 2018 before I am (I pray) drug free.

I've no idea if the Avastin pain will get worse/tail off during treatment. I don't take any pain killers as I don't want the feel foggy. So unless the pain is particularly bad I try to ignore.

It's good to be able to talk about it. Thanks for posting Luchie.

T. X

[Purple-iris in reply to Rosewall101]

Hi

Have you tried an ankle support ? May help allow you to still do a little walking which overall helps with the aches and pains .when resting put your legs up . I also took paracetamol when my knee was bad which helped .

Best wishes Kim X

[Luchie in reply to Purple-iris]

Thanks Kim I will try the ankle support together with the stretch exercise that my cousin told me. 😊Xxx

[Rosewall101 in reply to Purple-iris]

Thank you for the reply Kim. I hadn't thought of a support bandage. Good idea. I've used Epsom salts and they do help a little. T. X

[Luchie in reply to Rosewall101]

Hi thanks for your reply, I thought our forum is so great because we can moan and winge and someone will reply with very good advice. We can all share our experiences. Sorry to hear you were not well during your chemo. Now we have this avastin journey, if your legs ache try to do stretch exercise whilst your in bed first thing in the morning by pointing your toes towards your knees, 10 times then rotate your ankle 10 times, alternate it, I did it this morning, my cousin who is a podiatrist told me this last night and does help a lot, especially the sole and heel of my feet. Take care.. Xx

[Luchie in reply to Luchie]

Sorry , Kim that's my reply to ROSEWALL101.. Xxx

[Bobbyo1 in reply to Luchie]

Hi I was put on avastin for 18 cycles which strunk my cancer but it was for only 18 cycles that was it was funded for had a little side effects but was not too bad it's a shame I could not keep on it

[SusanAM]

Hi Luchie

There are a good few side effects for avastin. I am on the ICON8B trial and was to have 18 doses of avastin (along with 6 of taxol/carboplatin. I had to quit at 16 because of peripheral neuropathy. Here is a link to the Macmillan page about avastin which includes side effects. Your side effects are named there. macmillan.org.uk/cancerinfo...

Susan

[Luchie in reply to SusanAM]

Hi Susan, thanks for your reply. Yes I will have a look on that.. Take care. Xx

[Choski]

Also the Avastin page gives this

avastin.com/patient/treatme...

This lists all side effects including the very rare but it is stressed that everyone on Avastin should be aware of them.

There was also a post about the full side effects a couple of months ago I think

Clare xx

[Luchie in reply to Choski]

Thanks Clare, I've just read it.. Take care.. Xx

[Chele21]

Hi Luchie, I have now been on Avastin for 3 years I've just had my 54th infusion. I have had all these symptoms but the worst for me is my nose I get woken up every night two to three times with a red hot poker in my nose it is so painful, my eyes stream, I have a full on flush, so not much sleep I keep thinking how much longer can I cope with this, but then realise Avastin is keeping me alive as I'm terminal, and it's seen me through to being a grand mum twice, gorgeous boy and girl. So I will carry on so I can see them grow up, unless my BP misbehaves which is regular, or too much protein which is slowly going up! They are worth fighting anything for. X

[jane2014 in reply to Chele21]

Hello Luchie, I find yoga and swimming really help me. I'm bent double and hobbling around in the morning until I do some simple stretches. I'm magnesium deficient too which doesn't help. I soak in Epsom salt baths and use a daily magnesium spray to alleviate the aches. I feel it's worth the discomfort to keep the cancer at bay. Jane x

[Luchie in reply to Chele21]

Thanks for your reply, we all do our best to fight this beast. We are all fighters.. How come your are on avastin for so long? I thought they can only give it to you for 18 cycles. Wishing you well in your treatment.. Xx

[Purple-iris in reply to Chele21]

Hi

Can I ask where you are being treated ? Think the NHS uk only funds 18 treatments ( normally every 3 weeks ) of Avastin eg a year as part of first line now .

If my body continues to tolerate was going to investigate how I could stay on longer as Prof from Christies that spoke at Overcome day is trying to get approval to extend for those patients it is working for.

Thanks Kim X

[Chele21 in reply to Purple-iris]

Hi

I'm being treated at christies too, but I think I just slipped in before the rules were changed by NICE. But rules have been changed in the last 2 months as it used to be an on hold drug, and it's not now, it's worth asking. Perhaps I'm a guinea pig to see how long we can cope with it!!

[Purple-iris in reply to Chele21]

Thanks will definately investigate Kim X

[Hertsmum]

Hi Luchie thanks for posting about this, I've found the thread very interesting to read. I've been on avastin for a year and whilst it has so far, touch wood, been doing its job, I have had increasing problems with soles and heels of feet and some leg pains. I also get the bad headaches on waking sometimes, and the runny nose. It's all bearable and worth putting up with to keep the beast at bay but I do worry about long term use of the drug. I'll try the exercises before getting up, makes sense. Keep on keeping on, even if it is hobbling!

Love, Madeline xx

[Luchie in reply to Hertsmum]

Hi Madeline, thanks for your reply, as I've mentioned earlier I have all the things your experiencing at the moment with avastin except the runny nose. Isn't it horrible getting up first thing in the morning and you can't hardly walk because of the pain at the sole and heel of your feet.. Like you I hoble. But my cousin who was a podiatrist told me to try and stretch my whole legs and feet whilst I'm lying on my back before getting up in the morning. By pointing your toes towards your knees and alternate it by rotating your ankle, I was surprised at the effect this morning, I was a lot better than before.. So please try, there's nothing to loose.. Hope the pain eases off soon for you.. Xxx

[jools53]

Please try Claritin heard it works well for pain joints etc or loratiine not sure how it's spelt but same thing cheaper ! Lots of talk it works ladies xx

[Jonich]

Hi Luchie

I’m about two thirds in taking Avastin. I also get aches and pains. I look like I’m about 90 hobbling around first thing...Also my feet especially when I get up in the morning. It seems to wear off during the day or I’m just getting used to it😉 I also have a blocked nose and my voice was affected from the very first treatment I now have a sort of husky sound ..hope you start to feel a bit better soon. I know what you mean about worrying when you get a new niggle..😘