Need help with Avastin side affects: Hi Ladies... - My Ovacome

My Ovacome

17,622 members19,899 posts

Need help with Avastin side affects

Sonshine1 profile image
23 Replies

Hi Ladies........This is Sonshine 1. I haven't posted in awhile but have been following your posts and must say this is a very good way to communicate. It's like we are all in a special family. My prayers go out every night for all us ladies that fight this battle. I do have a question........I did decide to stop my Avastin treatments after 16 infusions, which includes the 5 along with my chemo treatments. The joint pain, unusual symptoms that started and the fatigue just got to be to much. My question is has anyone out there been on Avastin as a stand alone and stopped. I'm wondering what your side affects were after stopping and how long they lasted. It has been 6 weeks since my last infusion and I'm having very severe joint pain throughout my whole body and now on pain relief medicine to get through the day. I'm wondering if anyone has gone through this and how long it took. Thank you ladies for being there. The best to everyone.

Written by
Sonshine1 profile image
Sonshine1
To view profiles and participate in discussions please or .
Read more about...
23 Replies

I am taking vitamin B12 tablets for muscle pain while on Avastin, and it started working for me after just 3 days, I have had 14 Avastin , 1 every 3 weeks as well as the 6 I had with my chemo. might help you, oncologist prescribed them for me. xx Jeanette

Sonshine1 profile image
Sonshine1 in reply to

Thank you for the information, I will give that a try too. How many infusions are you scheduled for.

in reply to Sonshine1

I live in Spain and will have Avastin as long as it is working for me. xx Jeanette.

Katmal-UK profile image
Katmal-UK

Hi Sonshine. I had a full year of Avastin on a trial for first line which ran alongside the standard 6 cycles of chemo the carried on for a further 12 doses so 18 in all and completed the 'course'. from memory the pains took fully 6 months to totally subside but on the plus side it did give me a remission of about 4.5 years. I was prescribed cocodamol, tramodol and oramorph (when things got too bad) but did manage to continue to work full time. I do hope you get relief from the pain soon. Kathy xx

Sonshine1 profile image
Sonshine1 in reply to Katmal-UK

Wow.......thank you so much for that information. 6 months, that is really a long time but if it gave you a nice remission. Are you fighting a second line now. I don't have the bleeding gums and just occasional headaches. The pain in my hands, neck and back are pretty severe. Well I will plan on approx. 6 months......it's nice to hear other's experiences. Pray the best for you. Sandyxx

Katmal-UK profile image
Katmal-UK in reply to Sonshine1

Hi Sandy. Ive had two recurrences, currently 47 months in remission following the second recurrence and on a trial for Olaparib. If I get to October I'll have made 10 years :) x

Sonshine1 profile image
Sonshine1 in reply to Katmal-UK

Wow........that is awesome. Big Hugs. Tehank you sharing

GBIRVMIC profile image
GBIRVMIC

Hi Sonshine I was on same treatment as Kathy.. finished Avastin in March this year. Like you I just ached more on my legs and felt as if I had a ton weight on my shoulders. Try soaking in a bath with Epsom Salts for approx 20 mins, really helped me. My aches went away after 9 weeks, my gums don't bleed as much, my headaches have disappeared but I still have cramping pains in my tummy and take Buscopan which helps. I'm now back to work full-time but do get very tired. I wish you well and hope the info helps. Love Michelle x

Sonshine1 profile image
Sonshine1

Thank you Michelle for your information. I will try the epson salt bath, I remember hearing a while back that was good for detox of the body. 9 weeks isn't so bad......looks like it will vary for each person. I'm retired so going to work at least is not an issue. I just need to wait it out. I'm at 6 weeks. Hope I didn't stop too soon, I'm 2 shy of the full 18. I pray for your continued health. Hugs Sandy xx

Epsom salts are just magnesium. if you don't have problem with it - salts wont do anything. if you DO have problem with it - then you should see your doctor.

I'm on my 16th cycle after 6 during chemo and yes, pain in joints and all body, especially bad in my knees at times.

I was prescribed tramadol but haven't tried it yet as it makes me very 'drunk'.... if I get approval I wont stop Avastin until alternative drug is available

can't you have just a break from it, for lets say 12 weeks, like some have in case of interval debulking surgery?

LesleyGreengran profile image
LesleyGreengran

I was on avastin for a year and had no problem with side effects when I came off. I think you need to talk to your team.

Irisisme profile image
Irisisme

Hi Sandy/Sonshine & others,

I am on Avastin only and haven't stopped it - yet! I am having the joint pains, especially in shoulders and finger joints. My oncologist isn't willing to accept these pains are a side-effect of Avastin and has said only by stopping it and seeing if the pains cease would we know, so it's interesting to note how long they last after coming off Avastin.

I am seeing a rheumatologist tomorrow (13/07), which could be interesting.

Things I also think are Avastin side-effects are abdominal pain and blocked nose/nose bleeds. Blood pressure is ok, WBC fine, although RBC & hematocrit is low (as is magnesium but this may be due to too much Laxido taken for constipation!).

My pain management is paracetamol 4 times a day with Oramorph for break-through pain, which is common.

I'm not going to stop the Avastin yet as my most recent CT scan showed a "significant regression" of the nasty little bu***rs left after chemo/debulk/chemo!

Good luck to all you lovely ladies,

Iris xx

Irisisme profile image
Irisisme in reply to Irisisme

ps I have tried Epsom Salts based on posts by others, it helped the muscles to relax (thank you, ladies) but didn't really do much for the joints - but then, it's not easy to get my shoulders properly soaked - I got a bath sleeve from the Limbo web site to protect my PICC line. It was good to have a soak in the bath.

Irisisme profile image
Irisisme in reply to Irisisme

Ps ...and fatigue; it's so much part of my life I overlooked it!

PAE68 profile image
PAE68 in reply to Irisisme

Mine too! I am learning to live with it - ick!

Sonshine1 profile image
Sonshine1 in reply to Irisisme

I know it is so strange that some Dr's don't recognize it as side affects to Avastin.....yet everything I read and ladies I talk to all say the same. I took a chance and stopped, my GYN isn't happy about that but he understands. He agrees somewhat for me because we don't see and remnent tuors in the CT and at this point CA125 is so. low. However, you just don't know how long that will last. My pain seemed to intensify after I stopped.

Marching on Lavender girls

Hugs to all

Sonshine 1 xx

Katsmum profile image
Katsmum

I had the 18 doses of Avastin and had painful feet, occasional nosebleeds and fatigue but it all improved after about four months. Now on 2nd line chemo so feeling back to square one but still battling on!

Irisisme profile image
Irisisme in reply to Katsmum

Keep battling on, Katsmum! Through all of this there is still a decent life to be had ❤️️

PAE68 profile image
PAE68 in reply to Katsmum

Keep battling, I am in treatment again and it sucks but I am determined to push on and totally support you in battling this monster!

Pat

Sonshine1 profile image
Sonshine1 in reply to Katsmum

You go girl........you have to just keep going. I call us the Lavender Girls, and we never give up.

PAE68 profile image
PAE68

I am sorry you are going through this I just started on Avastin I receive it every two weeks, and also receive Doxil once a month - I will let you know if I have side effects once I come off of it - while receiving this treatment regime I have a sore mouth and flu like aches

Hang in there,

Pat

Sz123 profile image
Sz123

Hi Sinshine1

Just wondering how are you doing,are you still taking those mushroom tea.

xxx

Shabs

Lizzie1234 profile image
Lizzie1234 in reply to Sz123

Hiya sonshine

The pain in my bones is so bad I practically need a wheelchair. Painkillers don't touch it but after last chemo I noticed it wasn't so bad due to steroids so spoke to consultant and I'm now on a lose dose of steroid every morning to keep it all in check. Result!

You may also like...

Avastin side effects?

just had a question with others on avastin about joint pain muscle pain and exhaustion. My chemo...

Avastin side effects..

having the avastin treatment and your experience with it. I had my 4th sessions of avastin only...

Avastin side effects?

rounds of chemo, with the last 2 sessions over lapping with the start of a long regime of Avastin....

Avastin and less-common side effects, esp. joint pain.

Hello ladies. Do any of you have experience of joint pains while on Avastin only (and so not caused

Avastin side effects

having quite severe joint pain and peripheral neuropathy after 6 treatments of Avastin and am...