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survivor1
@survivor1

Posts: 11
Joined: Aug 12, 2016

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

Posted by @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?

REPLY

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?

The best place I found before and chemo was Chemocare.com and my treatments of radiation, intravenious chemo and targeted chemo to treat cancer
were also looked up under the American Cancer Society. to name a couple.

irvkay312

I’m so sorry, you had quite a bit more than I did, I had lymphoma and 6 months treatment of chemo. I have been clean since Jan. 2015, I still go for blood tests and my numbers are good, I still have one more cat scan to go through in 2017 ( Jan. ) The one thing that stays with me is the fatique, I am always tired and It has stopped me from doing exercises like I used to do. My doctor wants me to take a nuclear test stress , which is scheduled for the 16th ( next week ) to make sure my heart is in top condition. Lets pray for each other. Good luck, Lacey

@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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Yes I am able most days, I also have two teenage boys that I must drive everywhere so I do not have time to be down. Unfortunately I will have a day that I am running kids and then the next day I am exhausted and am not able to do much. When I am not running kids I do go to the gym after drinking an energy drink to get motivated.

@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

Having a young family, and running them to different events, will keep you flexible and able to do a lot more than if you sat around on the couch all day. You will train your body to move again like it used to, it takes time, don’t forget to breath and rest in between. I do drink the Ensure ( extra protein ) and that seems to help a lot. I don’t think it will ever be like it used to be, but we were all a lot younger than also. Good luck, God Bless Lacey

@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

Thanks, Colleen, I will try to share my experiences with everyone, I just don’t want to make them feel that they will have the same effect as I do, we are all different that way. Had my blood tested this week again, it came out very good, still very tired, really need to push myself off the couch and walk, a little each day, keeps the doctor away??? Lacey

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.

@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

Lacey I know my body will never be the same like it was before cancer. I am trying to find my “new normal”. It is a painful journey but I am a fighter and I will keep fighting not only for myself but for my children and to be an example to other breast cancer survivors.
God bless you too 🙂

@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

Hello, I do have a system that works for me, the day before, I think of what I have to do the following day and that is all I do, I try not to crowd too much into one day, if I have an appointment, I plan some shopping around that appt. , but than I want to get home and rest and I have 3 doggies who depend on me. it works??

@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.

Jump to this post

Having cancer and being in hospice for it now, I see a lot of similarities that I’ve learned from research and my sessions with my Hospice nurse. First and formost, I would relate your schedule to be a busy one. Slow down and realize that your chemo, cancer affects on various organ systems all takes its toll. Even now, I would seek to find a caregiver or support group to help you with your many chores, or your going to wear yourself out before your time. Your system needs rest in order to try and make up some of what it has lost. Next, your not as young as you were, taking into consideration, what cancer, chemo, etc. have taken away from your system.

With my Islet Cell Cancer, when I started to see differences in what I could do, I wanted to know why? That was the answerr, over time cancer had taken so much away; that “I began to live one day at a time and seek to enjoy what my Oncologist, team, and I called the Quality of life.” Not over doing or underdoing, but being comfortable with what I did each day.

It’s often hard to recognize when you can’t see it “such as being BEAT or fatigued, you’ve run out of your body will allow you to do comfortablythat your body no longer has–that’s fatigue. Also, your seldom able to renew or restore lost energy as fast as you once did.

Re-evaluate what you can do within your means, while not doing too much too fast.

irvkay312

@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

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

@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.

Jump to this post

I’m also fatigued from recurrence chemo

@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.

Jump to this post

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.

@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.

@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.

Jump to this post

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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