Is it just me? I'm having terrible side effects from chemo.

Posted by kayanonsen @kayanonsen, Jan 15 12:20pm

I just want to reach out to you all because I am wretched after my first and second chemo treatment (tchp for Invasive Ductal Carcinoma). I never see this kind of misery on any posts anywhere. First treatment, my vagina had me in agony with itching. Second treatment and I have a big rash on my backside, very painful and itchy. And my hands have little cuts and nicks because my skin is so thin now I guess. Am I the only one?
Kay

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All my bad reactions, like 72 hours of cold sweats starting 3 days post-infusion, were because I was given 2+ times as much steroids as I could tolerate. IDC ER+ here. I also got wasted because docetaxel is in a solution of ethanol. I wasn't warned. I've been totally sober for 13 years except for these episodes of involuntary intoxication.

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O my, dear, Ive not heard of that type of reaction. Clearly discuss with your oncologist.
Do a search on adverse side effects on your chemo meds. Try google scholar and also check with a pharmacist.
The pharmacist is a great help. Go into your local place and discuss your drugs with them.
I called mine up about a few drugs. I learned about half lifes and the side effects.
You and your onc can make better choices with this information.
Blessings to you and I am praying for you that God will give you His wisdom and guidance on how to pursue. Go with your gut.

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@kayanonsen this sounds just wretched! Please talk to your doctor about all of this before your next treatment, you can call and ask for an appointment, it is not uncommon for patients struggling with severe side effects. Just to confirm, this is side effects that need attention.
I took a different protocol for my first round of treatments, but it was wretched, I was nauseous with no reprieve for 8 months. My normal 170 pound frame became emaciated to a 95 pound shadow of myself. I was burning up or shivering all the time and having a host of other annoying things. I mostly tried to suck it up and push through which was my only option really, 20 years ago.
All this to say, you are not alone in misery. There is less misery in breast cancer today because there is less need for chemo, and better treatments for side effects. All those improvements don’t really help if you are one of the lucky ones who get to go through it.
Are you comfortable calling and asking for help with this? Will you come back and tell me how you are doing?

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Hi and thank you for your lovely reply. I do keep my oncologist in the loop but she is not helpful. First she told me I'd only be sick for 2 days, nausea, fatigue, and every time I tell her of a symptom, she says; "yeah that can happen" I felt very blindsided by not knowing. I thought there was something gone wrong, up in the middle of the night wondering if I should call 911.
Now my bottom is so sore I can't get comfortable. I've tried to call her, I've messaged her, I've called the front desk and on hold forever, and my patient navigator's mailbox has been full for weeks.
But it feels good to get responses here. I feel reassured. I don't want to suck it up or push through. I want relief. I want to get up out of bed and get on with my life.
Thank you so much for responding, feels good.
Kay

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Me again, my last post I must say, I thought about it later and I take a lot of that back. I do appreciate that there is a concerted effort to save my life. I just wish i was told more information, and treated like a whole person I guess.

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I was sick in bed for 2 weeks after my first chemo, The Taxol was lowoered by 20 percent and then the experience was okay. I even found my teatment relaxing ,sitting in a recliner with a warm blanket and being served apple juice. That was almost 3 years ago and I'm fine now. I'm 82 years old.

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Wow and here I thought I was old at 67 doing this. I like the treatment too so quiet, I bring a book and it's an excuse to sit and relax. But I seem to be having an allergic reaction to the meds and I hope I get to talk to the doctor about this soon. She said she would work out a new plan for me.
So glad to hear you're fine now. Nice to have this behind you! well, I'm having an end of treatment party, even if its just going out to a restaurant and sitting down for a nice meal. Not jello or cottage cheese!
Thanks for responding, less frightening having you there.
Kay

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@kayanonsen

Me again, my last post I must say, I thought about it later and I take a lot of that back. I do appreciate that there is a concerted effort to save my life. I just wish i was told more information, and treated like a whole person I guess.

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You don’t need to take it back, unless it was unfair. Honestly I have that same feeling sometimes with my medical team even today. I had every feeling you describe during times of intense treatments. I do understand that doctors get very focused on saving our lives (very important, lol) but I think they forget sometimes about us as people.
I do find the oncology nurses to be an amazing source of help. If you aren’t getting the help you need during that short visit with the oncologist, the nurse can sometimes take more time time to understand and know what to ask for on your behalf to lessen the misery. Those nurses deal with a wide variety of patients and they are absolutely amazing.
When is your next scheduled appointment? Are you able to eat and be comfortable now, until the next time? How many treatments?

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@kayanonsen

Wow and here I thought I was old at 67 doing this. I like the treatment too so quiet, I bring a book and it's an excuse to sit and relax. But I seem to be having an allergic reaction to the meds and I hope I get to talk to the doctor about this soon. She said she would work out a new plan for me.
So glad to hear you're fine now. Nice to have this behind you! well, I'm having an end of treatment party, even if its just going out to a restaurant and sitting down for a nice meal. Not jello or cottage cheese!
Thanks for responding, less frightening having you there.
Kay

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When I ended treatment the nurses gave me a sweet certificate of completion and a little bee pin.

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I had chemo for 6 months 32 years ago this year.
I think it was the worst I have ever experienced- since then I tell myself that if I did chemo I can do any other test or treatment.
I didn’t have Zofran after the first treatment - I vomited of course. With Zofran just nausea.
I had an unusual reaction. I had severe abdominal pain- as if someone was in there slicing me up. After a couple of days I would pass a large amount of white material- lining of intestine probably. Later in life this caused an unusual GI autoimmune illness.
I would stay home 2 weeks and then work 2 weeks etc.

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