How long do side effects last? - 1 1/2 year survivor

Posted by survivor1 @survivor1, Aug 11, 2016

I am a breast cancer survivor. I had IDC stage 2. I had chemo TAC . Double mastectomy and total reconstruction. Although it has been about a year and a half from my last chemo treatment I feel fatigue, joint pain all over, permanent hair loss, muscle atrophy, arthritis and more. I am told that chemo can stay in your body for 5 years. I also have chemo brain which at 55 is part age I am sure but it is not getting better. How log can these side effects last?

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@colleenyoung

Welcome to Connect @survivor1. I revised the title of your message to be more specific to your question. It is a good question and one that many people who have had cancer treatments ask, and that professionals are paying more attention to. In fact, just last year the American Cancer Society and the American Society of Clinical Oncology published a Breast Cancer Survivorship Care Guideline to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer. Here's the full study http://jco.ascopubs.org/content/early/2015/12/07/JCO.2015.64.3809.full and a lay person's summary https://medivizor.com/blog/2015/12/18/side-effects-of-breast-cancer-treatment-infographic/

@grandma41 @cautiousoptimism @susanao1 @yyyy @scwgal @rena42 @johnwburns @lacey @donnelson @teege1 @lynnkay1956 do you have any experience or insight about long lasting side effects to share with Survivor1?

Survivor1 - by the types of side effects you list, I bet it is a challenge to be physically active. Are you able to incorporate physical activity into your day?

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I'm in chemo again after 1 yr had surgery for recurrence
Very tired after each treatment
Hanging in best as possible for husband and kids and grandkids

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@survivor1

Hey Lacey, I hear you on the fatigue thing. I had a good day yesterday and I did a bunch of errands and driving kids. Today I am wiped out. I know I am supposed to exercise too but when I can not even walk to the kitchen without effort I cannot get on the treadmill.

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I'm also fatigued from recurrence chemo

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@survivor1

Hey Lacey, I hear you on the fatigue thing. I had a good day yesterday and I did a bunch of errands and driving kids. Today I am wiped out. I know I am supposed to exercise too but when I can not even walk to the kitchen without effort I cannot get on the treadmill.

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Thank you Lacey you have been such a great help and I will pray for you. There is no support group near here and I hear what you are saying. Fortunately my boys are 16 and 18 and can help. I live on 3 acres and love getting outside in the fresh air. Things are crazy now right before school starts but once it does my boys will be gone all day. I am just tired of feeling bad.

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@colleenyoung

Welcome to Connect @survivor1. I revised the title of your message to be more specific to your question. It is a good question and one that many people who have had cancer treatments ask, and that professionals are paying more attention to. In fact, just last year the American Cancer Society and the American Society of Clinical Oncology published a Breast Cancer Survivorship Care Guideline to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer. Here's the full study http://jco.ascopubs.org/content/early/2015/12/07/JCO.2015.64.3809.full and a lay person's summary https://medivizor.com/blog/2015/12/18/side-effects-of-breast-cancer-treatment-infographic/

@grandma41 @cautiousoptimism @susanao1 @yyyy @scwgal @rena42 @johnwburns @lacey @donnelson @teege1 @lynnkay1956 do you have any experience or insight about long lasting side effects to share with Survivor1?

Survivor1 - by the types of side effects you list, I bet it is a challenge to be physically active. Are you able to incorporate physical activity into your day?

Jump to this post

Hang in there girl. Use your family to help keep you motivated to keep going. Listen to your body. I pray for all of us.

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@survivor1

Hey Lacey, I hear you on the fatigue thing. I had a good day yesterday and I did a bunch of errands and driving kids. Today I am wiped out. I know I am supposed to exercise too but when I can not even walk to the kitchen without effort I cannot get on the treadmill.

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Ladies, Cancer is one of the most complex and overwhelming of diseases we can come to encounter. Most of you have come to realize as you travel this path that "there is no majic pill, chemo, or traetment." That's because our bodies all differ in their systematic actions and adverse affects relative to treatments often used--chemo too. Realize our age and body changes every minute of every day, which we often don't see, but only feel when the burden becomes overwhelming to us, our body, or our desired pursuits in life. So what's the answer, "it is that no one size fits all in most respects or aspects."

My cancer started as Islet Cell, somewhat middle pancreas (that controls our bodies basic enzymes for digestion and hormones for other body operations). The first treatment was 28 radiation treatments. Next came 2 cycles of intravenious chemo that I felt and saw all types of affects with. The next thing that came, since we had seen positive results so far, was targeted chemo of 15 cycles--12 of pancreas and 3 of kidneys, where Islet Cell was said to mestasize too.

With every day, my diet became less, as did my energy and fatigue increased drastically in area's I never thought possible. I tried one last item to slow the tumor growth and it didn't work. Consequently, it had taken so much out of me, my system and my abilities, that walking a short distance for my meal; eating small snacks so as not to over burden my digestive system and even occasional sips came to tire or fatigue me to needing a nap more and more often. since my cancer had mestasized to several

As my Hospice team told me at their last visit, much energy is being sought by your body that you simply don't have. Another item of concern to me was that even with the small amounts of food eaten, no energy was attained--because the Liver didn't metabolise their contents properly into my system for absorption; but released them as waste. That was only part. The other part was that the chemo that was said capable of causing reactions 5 plus years after its use, had also caused my kidneys to enter Stage 3 Chronic Kidney Disease.

At this stage of my life, in hospice for only two months; things are becoming more noticeable. Having had 4 stages (types) of epilepsy I do feel was a blessing as noted by my Epileptologist--since"if or when you'd black out short or what ever, it seemed like the end had come. Similarly, I came to realize how those actions came to confuse the mind and body when the seizure was concluded. So I seek to enjoy the Quality of Life to its fullest and within my means, each day.

irvkay312

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God bless you. You are so strong and I love your attitude. My doctors all told that attitude is 90% of how you and whatever treatment you hare having. Keep going 🙂

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@survivor1

God bless you. You are so strong and I love your attitude. My doctors all told that attitude is 90% of how you and whatever treatment you hare having. Keep going 🙂

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Happy Saturday survivor 1, the sun is shining and its going to be a beautiful day and your doctor is right, attitude is 90 % of everything in our lives. It won't help to feel down and beaten, this morning, my doggies and I went for a short walk, it made all of us feel better and the fresh air is the breath of life. Try to join a chat group in your area where you have something in common with the people to discuss life in general ( keep your private moments to yourself ) I am joining a group called Livestrong, my cancer navigator has enrolled me, so I am looking forward to that, will let you know how that goes. Stay strong, my friend, I am here if you need me. Lacey

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@survivor1

Hey Lacey, I hear you on the fatigue thing. I had a good day yesterday and I did a bunch of errands and driving kids. Today I am wiped out. I know I am supposed to exercise too but when I can not even walk to the kitchen without effort I cannot get on the treadmill.

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This is natural Rena, give it some time, you need plenty of rest if you have just gone through Chemo, they are very strong drugs ( after all, they are killing off the bad guys ), it will get better down the road, keep trying to get a little exercise each day, but don't over-do it. Talk to God, he listens, God Bless, Lacey

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@survivor1

God bless you. You are so strong and I love your attitude. My doctors all told that attitude is 90% of how you and whatever treatment you hare having. Keep going 🙂

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Happy Saturday to you too. Yes the sun is shinning here and it is actually cool outside here today a nice break from the 100 degree weather we have been having. I like to sit on my front porch and watch the birds and listen to nature as the earth wakes up to say good morning. Livestrong is fantastic. I get their news letters. I will look into that as there is no local group. I live is a small town that does not have much to offer. I am forced to go on line to look for support. You have been terrific. I am here for you as well.
Suzi

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@survivor1

God bless you. You are so strong and I love your attitude. My doctors all told that attitude is 90% of how you and whatever treatment you hare having. Keep going 🙂

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Hi Survivor 1, its been a long time since I have been on here, but in the mean time, I did join the Livestrong program, it is held at every YMCA around the country, so see where the closest Y is by you and sign up. I love it, it gets you back socializing and exercising and out of the house, plus its FREE.
Everyone in the group ( around 15) including some guys had some kind of cancer and we can discuss the pros and cons. You find out , your in better shape than others, makes life a bit easier to take, your always worried that it may come back, but there are people out there , clean for 20 years etc. I am feeling better, not so tired, eating better and don't forget that morning protein drink, my favorite is butter pecan Ensure Have a great day, God Bless, Lacey

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