My Ovacome
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Need help with Avastin side affects

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.

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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

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

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

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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

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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

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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

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

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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

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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

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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?

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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.

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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

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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.

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

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

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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

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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!

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

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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

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

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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

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Hi Sinshine1

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

xxx

Shabs

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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!

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