How long do side effects linger?

[Wicomico]

After Carbo and Taxol, I did a year of 'maintenance' Avastin. I finished that in Feb 2021. I still have lots of pain (joints, muscles, etc) and still feel as tho I have chemo brain. Am I just crazy, or does it take a long time for the body to heal from all of these drugs? I appreciate anyone's input :).

[Archeveritas]

I completed the same drugs 4years ago and still have pain mainly in my hips. Have had cortisone injections without any results. Have learned to live with it. It is different for everyone so your pain may subside….one can only hope.

[Wicomico in reply to Archeveritas]

Thank you for your input. I sometimes feel like I'm being weird saying that I still have pain-makes me feel more sane to know that it doesn't go away quickly for everyone. Thanks again. (I hope yours goes away very soon!! )

[Ruebacelle]

Had the same protocol. A long time esp if you have neuropathy and chemo brain. But it does get better. Gooduck

[Wicomico in reply to Ruebacelle]

Good to know- better to understand what is happpening!

[Marigold-Jane]

I know what you mean. I suppose it does take our bodies a while to get over all those invasive chemicals. I always think about what it did to my hair, so what was it doing to all the other cells in my body? I get joint pains, but I think that may be because the chemotherapy drugs have exacerbated my arthritis. My hands are painful, every so often - probably from all the cannulas, but they are improving. No one believes that I have Chemo brain, but I do have fleeting moments when my mind just goes blank. My Oncologist said that the neuropathy in my toes, will probably never completely go and I’ve got used to it. I’m optimistic that things will gradually improve, so I hope it will be for you too. Tiredness is my main symptom, 8 months after the last cycle of chemotherapy. Take care.

[Wicomico in reply to Marigold-Jane]

Thank you for your input. I’m sorry that you are dealing with so much, also. It’s probably best that the docs don’t tell us how miserable it all is! Take care and stay well.

[Marigold-Jane in reply to Wicomico]

I know! I optimistically thought it would be all back to normality after the last chemotherapy. You stay well, too.

[Sw21]

I am 2 yrs out from that protocol. I have about half my old energy level, short term memory problems, joint stiffness and pain, g.i. issues, and still get short of breath. And an incisional hernia for good measure. A chemo nurse told me however long you are on chemo, it will take your body 1-2 times that amount of time to try and repair the damage done by the chemo. Some people do not get back to baseline. But, we do what we must. I just think of this as my new normal, but do miss my old stamina and quick thinking. Best wishes to you.

[Wicomico in reply to Sw21]

Hey, thanks for the info. I am taking in all of the comments and realizing that this is a longer road than I thought....but I am, unfortunately, not alone with these issues. I hope that ALL OF US shake this nastiness eventually. Thanks again to everyone who posted!

[delia2]

I think it’s normal to still feel this way. I found physical therapy very helpful. I had nine months remission then back on chemo. Now been on Olaparib for 14 months and finally getting more normal. It’s a process! Xx

[Sorid]

I have been free of chemotherapy and radiation for two years☺️I have horrible neuropathy that subsides then comes back with a vengeance .I feel it every day.l have been told there are no solid answers.l found that putting sheer curtains at the foot of the bed eases some of the discomfort when l sleep.My feet can slide without getting stuck on the sheets.ln the wintertime ,l put fleece material for a bed sheet for warmth.A foot bath with Epsom salt helps too 🤗

It’s difficult cause my thermal regulation is gone.Too cold...too hot.Used corn bags(like rice bags) they smell better and keep the heat longerMy mind is slowly getting back,but if l get upset or unnecessarily stressed my mind goes blank and l get feeling sick and weak enough to have to lay down.NO ARGUMENTS PLEASE.

l know l need to exercise in one way or another ,because weak muscles use more energy than strong ones.

Hang in there.l always say..it could be better,but it could be worse. I say prayers for all my healing sisters every time I start feeling sorry for myself...which is quite more often than it should be 🙄

[Archeveritas in reply to Sorid]

We all have the right to sit on the “potty pot” once in awhile. When I look back at what I have survived, I amaze myself that I got through it. Every day is a challenge in one way or another, but it is also a gift. Sometimes I need that reminder. We all need to stay vigilant and advocate for ourselves. Yes, we may ache, be unmotivated, be overweight, have numb feet, and the list goes on…oh, I just described myself! Hang in there! Watch the clouds in the sky, enjoy the sun on your face, feel the gentle breeze and smell those roses sister!

[Sorid in reply to Archeveritas]

Thank you for your quick reply.lts a good day to be alive💕

[Wicomico in reply to Sorid]

Hey, thanks for your comments. I too have terrible thermal regulation problems. I guess we just have to hang in there, though I really wish they listed these as side effects. It might not have changed my mind, but at least I would feel as though there was full disclosure. :)!

[Prairie-smoke]

I know this post was written a couple of months ago, but I just wanted to say that it is comforting hearing that I am not the only one experiencing pain and stiffness on Avastin.

I found this group while searching Avastin and pain because I wanted to find out if the medicine was causing it.

My doctor claims he's never heard of this side effect and told me it was probably menopausal. I'm 49 and had my hysterectomy last year which put me immediately into menopause.

I had 6 rounds of carbo and Taxol with the addition of Avastin for 4 of the treatments. Chemo ended the beginning of March. While on chemo I had bone pain and neuropathy. Those two symptoms subsided in April, but a new pain began after I started on the Avastin maintenance treatments.

My hips and neck are especially stiff and painful. I have a physically demanding job, which makes it more challenging. I have found that daily yoga helps, and walking on the weekend, or any day that I'm not as active at work. Moving is better even though I don't want to.

Most of the time I can accept it as my new normal and try not to focus on it, but sometimes it gets me down. Nights are especially hard since I don't sleep well because of the pain.

[Wicomico in reply to Prairie-smoke]

I had the same treatment course, and the same side effects. I had been through menopause 20 years ago. None of the medical people seem to understand/acknowledge these side effects, but there are enough of us on here who have the same ones.... it's the meds!Hang in there...cbd oil or medical marijuana helped me through my worst nights and days.

[Prairie-smoke in reply to Wicomico]

Thank you for your supportive words! Sometimes I think the worst of it is feeling like I'm crazy and also feeling like I'm doing something wrong.

I ordered cbd oil yesterday from an acquaintance who is growing organic hemp and producing the oil. Can't wait to try it!

Love to you all !!

[Wicomico]

I am glad that you found this group--it has been a huge help to me. My docs also said that these side effects are not attributable to Avastin ?!?! Re: the menopause...I went thru menopause 15 years ago. I had the full surgery and am 99% sure that this is not a menopausal thing. The aches and pains you describe are familiar, and also vary from day to day. The most annoying to me is the chronic fatigue. But we shall persevere!!

[Prairie-smoke in reply to Wicomico]

Yes, I also have fatigue. It's unclear to me if this is lingering from the Taxol and carbo that I finished early March, or if it's from Avastin that I continue, or a combination.