Post Cancer Fatigue

galtgirl said:

Chronic Fatigue and Pain
I am so relieved to discover I am not the only person who has long term chronic fatigue and pain after chemotherapy. I thought I must be crazy.
I completed 6 courses of CHOP for NHL in 2009 and then had a thyroidectomy and radioactive iodine treatment for Thyroid Cancer. Over the past two years, I have had constant fatigue and muscle/joint pain. It waxes and wanes, but is especially severe right now. I am an RN but had to stop working when I started Chemo and was never able to go back. Fotunately, I had long term disability insurance and was approved for Social Security Disability. I am turning 65 next week, but some days I feel older than my Mother who is 92.
I babysit my two grandsons ( ages 3 and 16 mos) one day a week, and I am so exhausted after that I usually spend the entire next day in bed sleeping. I ache all over and feel like I'm in a fog of fatigue.
I am glad to know I am not alone. I wish I had known this was so common. I tell my oncologist every visit how tired I am and how much joint pain I have, and he just shakes his head. I know it's because there isn't a thing he can do about it, but it would be nice to have been told this is not unusual. It's not something I was informed of could happen as a result of chemotherapy. I think once you are in remisission, the oncologist considers his job complete. Too bad long term effects are not treated as aggressively as the disease treatment that caused them.

Thank all of you for your postings !!!!
For a little more than three years after having a Whipple for stage 3 pancreatic cancer. I have thought I was some sort of lazy,forgetful, hypochondriac! The pain(s) all over my entire body that, I can only describe to people as ( Not only being hit by a train but, also being dragged down the tracks a mile or two after being hit! ). Some days, it over shadows the pain from the surgery's after effects that some of us that battle P.C.(and I'm sure other cancers) are told to possibly expect! Then the forgetfulness A.K.A. "Chemo-Brain" and the fatigue that just comes out of nowhere at times! Needless say some folks think I'm making these symptoms up! I do have days where everything feels fine and I remember to get certain things done. So, what do I do... I tend to over do and pay dearly for it later! That's my doing though! All the things like thyroid, exercise, telling doctors. Etc.,etc. That all of you have mentioned. Been there too! Here I was thinking for 3 years. What happened to me? I was hard working, I like to think I was pretty sharp minded,athletic and full of energy. To getting P.C. and thinking "O.K. if LORD willing I make it through this...It might take a while but, I'll get pretty close to being on track and back to something close to normal." All of you posting here know all to well what the rest of the story to this point is. You also have lived it I'm sorry to say.

So I THANK ALL OF YOU! For your posts. I know I must sound like a rambling idiot to the rest of you! But, to give you an idea how your posts have affected me. I'll put it in this perspective. At this moment. Finding out I'm not the lazy,forgetful, hypochondriac I thought I had become. I feel the complete opposite emotionally as the day I was told I had cancer! THANK YOU ALL AGAIN! I don't know why the doctors don't mention the long term effects! I think Galtgirl made a good statement on that point though.

I'll mention something that helps me tolerate the joint pain some and some of you might already have used this but,if you haven't. Check with your doctors first! I take Celebrex 200mg. It seems to take the edge off. I've heard both good and bad about it but, it seems to work OK for me.

You can bet I'll check back to this area to read or leave possible ideas to correct the issues we face.

Wishing all a MERRY CHRISTMAS and GOD BLESS!
Oneshot

Fatigue
I am in remission for over 3 years now, and I have fatigue all the time and severe fatigue sometimes. I had a very aggressive form of lymphoma, and had a stem cell transplant. My doctor told me it is very unusual to still have severe fatigue after 3 years, but I have been doing research and have found that is not true. There is a lot of research that indicates that many survivors, many years later still suffer with fatigue. It upsets me that my doctor is not aware of this. I love my doctor and I'm very grateful to him, but it's is confusing to me that he is not aware of this. Could you please tell me what issue of "Cure Mag" you found this article? Thank you for any help.

jmsuarez said:

Post Cancer Fatigue
I was diagnosed with a enlarge B-cell Lymphona in August 2004...It was a Non-Hodgkins lymphoma..I entered remission in 2007 and to this day, 4+ years after ending the Chemo and radiation treatments and the medications, I still find myself suffering of sudden fatigue episodes. I could be well for months and then it hits...and it stops me on my tracks...I am down for days and I feel so depressed and helpless...I try to explain others what I am going through and I can't find the right words or feelings to describe it. I know I am not the only one..I know there are many of you out there that go through the same and can't seem to make others understand what you are experiencing. Let's talk!

Posy Cancer Fatigue
I am in remission for over 3 years now, and I have fatigue all the time and severe fatigue sometimes. I had a very aggressive form of lymphoma, and had a stem cell transplant. My doctor told me it is very unusual to still have severe fatigue after 3 years, but I have been doing research and have found that is not true. There is a lot of research that indicates that many survivors, many years later still suffer with fatigue. It upsets me that my doctor is not aware of this, but I guess his job is to keep me alive...and he has done a great job of that.

jlfmiller said:

Many thanks for your response to my post cancer fatigue message, I appreciate knowing that others are having bouts of this fatigue long after their treatment has ended. I just feel that much more needs to be done in keeping cancer survivors informed of what can go on in their lives due to all they have been through. I found a lot of interesting and helpful information on the Lance Armstrong web site. Go to www.livestrong.org, under All Topics, go to Late & Long Term Effects, then Fatigue, then Detailed Info. As to your questions, can something trigger this fatigue, prevent it or any tests for it? I really have no idea, but I do know I am going to certainly go into it more when I see my oncologist in a few weeks. I recently had several weeks where I felt much better, had very little of this fatigue, then all of a sudden, would have days when it was back again. So, it is a strange thing that you just never know when it will appear and all you can do is get a lot of rest and pace yourself.

post cancer fatigue
Just starting to read comments and am certainly comforted by your comments-----am a 17 year survivor of breast cancer with a stressful life afterwards---never knew that fatigue so long lasting could be from chemo---so it does make it easier to accept the circumstance and do what one can and not sweat the small stuff

kkkelley1 said:

Fatigue
I wish some of these topics were talked about in detail before treatment was done. Instead going in visit after visit and feeling like an idiot when your asking or telling your onc whats happening and he's acting like your the only one this is happening to. Then just when you thought you.ve lost it you go searching and find out thousands not hundreds but thousands of post ca trtmnt people are going through the same things.
It would have saved a lot of the energy i had lost and then spent looking for answers. YES they (whoever they are) are now even documenting article after article about these LEFTOVERS that ca causes. I wish now they would spend all their time searching for ways to help us all combat these horrible leftovers as I like to call it.
Thank you all for helping me feel un alone.
Keep fighting and kicking ok grunting and groaning.
kim

fatigue sooo tired. cry daily. joints are killing me. what ha

post cancer fatigue

I was reading these comments, and it made me feel better in that I wasn't crazy.  After chemo, radiation and masectomy surgery, I am still taking Anastrozole for two and one- half more years.  I am tired all the time.  Just beat down tired.  I am diabetic, and I wonder if that has helped.   

I finished 3 months of hard

I finished 3 months of hard chemo for stage 2/3 testicular cancer, which got into my lungs and lymph nodes. My last treatment was on August 5th of this year and I am still having trouble with naseau, and fatigue, anyone have any Idea's on this or that are experiencing the same thing. the Naseau is really getting to me.

 

mrsthomo said:

hi

My name is Amy and I am 23 years old. I was diagnosed with ovarian cancer in 2011, at the age of 20 and completed all treatment before the year was up. 

Most people here can tell you what stage they were at and all but I didn't care at the time of diagnosis. Quite frankly, all I cared about was the fact that I was going to lose my precious hair.

Anyway. I have 1 ovary and my memory is utterly atrocious. The only way I even know which ovary is still there is because my husband said "You are Right handed and Left ovaried!" I have no idea what I would do without him. I would probably waste away because a LOT of the time I cannot even muster enough energy to even feed myself.

It's been a dream of mine to have 6 children for quite a while now and I am rather terrified that I won't be able to care for them in the way I want to. 

It's been so long since chemo that I feel my 'I had chemo' pass is well and truly up but my body doesn't seem to realise it!

(Please excuse my typing. My computer is being fixed so I'm on my phone.)

t cell Lymphoblastic lymphoma survivor.

Hello all,

 

I am a 12 year survivor from t cell lymphobalstic lymphoma and I experience fatigue every day. I also have a lot of pain in my bones and joints. I have tinnitus in my ears. I must say that also my immune system is not as strong as it was before the cancer. I am very pleased to find out that I am not the only one who have such problems. I am tired of explenations of doctors that are saying that there is nothing wrong with me and that all exams are normal. I work 8 or some days 10 hours a day. I have a stressful job and some days I am exausted. I have a small babygirl at home and some days I don't have even the force to play with her. Nobody understands me. I really can't explain how I feel some days. Every time when I feel really bad and tired I think that the cancer is coming back. I tried a lot of alternative methods but none seems to help. I tried various diets, bioenergetics, yoga...

But every day I thank god that I am still allive an that I can see my daughter growing up. I think that I must just live every day at a time and try to squeeze the best out of it.

Ecxuse my english, because it is not my mother langugage.

 

Thank you again. I am really happy to find out that I am not alone and there are others out there that feel like I do and that are living in such a way.

Good life to all!!!

 

Post Cancer Fatigue

If your are like me, reading all these posts has confirmed you are not alone and not lazy.  With Breast Cancer ER+ HER2+++ I did 6 rounds chemo and one year Herceptin, I was too exhausted and damaged to accept radiation so I declined, not sure doctors would draw the line between ratio of benefit to harm.  In hind sight, I was informed later that had I done the radiation it would not have decreased my odds of recurrence and exposure could  have made things worse.  All I know is by the third chemo my speach was halted and slurred, wrong words, fell as often as I stood, and all the prior posting symptoms like losing time, getting lost, relearning to use things like kitchen without burning house down, the body pain and aches ... oh.

  But I also had to relearn to read, relearning math, was first chair musician and now can't even read music nor care about music.  I was also a highly sought after full life cycle computer engineer and technical writer, and now having to relearn how to make a post like this.  Spouse hooked up Dragon software to type for me, which with chemo induced speech issues makes posting interesting.  The point of this post is, you are not alone with with having to relearn a new YOU, having to relearn to read, spell, right words, balance, driving, not gettin lost, not messing up dates and appointments or having to relearn skills to just keep self and family fed.  I went from computer genius to practically needing the GEEK squad to plug in the TV. 

Today's world I can go from having an almost 'Normal before cancer day' to kissing the pavement without notice.  You are not nuts, not alone, and I have yet bumped into a doctor that has heard of all the issues folks have posted here, nor do they welcome a link to it, sadly.  I'm working on trying new skill sets, but honestly it takes the whole day (month) just to get a normal days worth of tasks done for survival like cleaning, meals, bills.  If you create more of chaos in your home while trying to organize it, you're not alone on that either - but if you figure out solution please post.  I can only say this, it is alot more fun relearning and more appreciative learning things the second time around, although I'm also learning somethings may not get back (e.g., music, math, spelling, grammer, higher reading levels) but not without trying.  Hang in there, DO NOT LET YOU be your worst enemy, give yourself a break and learn to be a new you.  Yes, YOGA makes a difference, the tame kind like Classical Stretch: The Esmonde Technique, not hard core 'feel the pain no gain' kind.  And when you hear folks say they'd rather pick up dog poo for a living then work another day at their job, smile, because I used to say that and now, well, guess what I did yesterday.  So yes, chemo croses the blood brain barrier regardless what the medical field believes.

If you are reading this post you are tired, so before taking nap eat a power meal (mix an avocado with a can of sardines and spread on toast), wolf down a peach, then take a nap.  When you get up start your 20 min yoga or stretch session, smell a flower and try to see what image the clouds are shaping and smile, say a prayer for those less fortunate and cherish what you have.  Now to I need to go practice what I just posted.  Virtual hugs, they are sincere.

Post Cancer Fatigue

I hate to do this ... I really do, but.....  Me too.  :-)

After my first cancer, I was left with low testosterone (testicular cancer, one of them had to go), hypothyroidism (low thyroid hormone leves---my thyroid was damaged by whole-brain/max-dose radiation therapy used to destroy anything left of the three brain tumors (2nd met) after the brain surgeries), and low B-12 (happened around the same time, but may not be related).  All of these, individually, can lead to fatigue, depression, etc.   I've been giving myself injections for the testosterone and B-12, and Synthroid for the thyroid, and I've still got low energy levels.  If I remember what I read a few days ago correctly (chemobrain), radiation therapy and chemo can both cause this.  Don't quote me on that, though.  Before those were being treated, my weight went very high (I'm guessing as high as 425--450), and I had no way of doing anything about it (an endocrinologist later confirmed that---there was nothing I could have done to stop the weight gain).  Once on the meds, my weight started to fall rapidly...to a point.  The rest of it is STILL fighting back.  At my last appointment with my primary care doc, who is also an internal medicine specialist (and is now handling all of this stuff for me now), a few weeks ago, I asked about this (both the weight issue and the continued low energy).  He put me on a legal ampthetamine called Adipex-P.  I still have to get an ultrasound of my heart (Fri) to see if I can stay on it, and it is addicting, so I don't know how long I'll be able to stay on it, but I actually have more energy now.  It still crashes to zero at some point during the day (and below zero if I don't stop what I'm doing immediately), but while I have energy, I have a lot more.

So y'all might want to ask your doctor about it.  Based on what he told me, it's not safe for everyone, so your doctor may not let you take it.  I know I'm going to ask if I can stay on this long-term (as in, for as long as I'll be on the injections and the Synthroid ... rest of my life).

Like I told him at my appointment .... Every year, around April, I tell myself, "This is the year I will be able to get my kayak back out on the Gulf."  And every year, so far, I've been wrong.  It's getting ridiculous, and I really want to get my kayak back out on the Gulf!  :-)