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Post Cancer Fatigue

jlfmiller
Posts: 4
Joined: Apr 2005

After being in remission for almost two years from rectal cancer (and feeling pretty good), I began to feel very tired all the time. This has gone on for months and much of the time, I feel like I did when I was on chemo. I know my blood pressure tends to become very low at the end of the day and I was blaming my fatigue on that. However, neither my oncologist or primary care doctor seemed concerned as I was not anemic and my thyroid medicine was working okay. I had never heard of post cancer fatigue until a few days ago when I received my Survivors issue of CURE magazine and read the article about Dr Wendy Harpham. I know this post cancer fatigue seems to be more common in those who have been treated for leukemia or lymphoma and also breast cancer. What I would like to know is, are there others out there, like me, who are experiencing this fatigue, long after treatment has ended?

tonigary's picture
tonigary
Posts: 12
Joined: Apr 2002

i saw same article and was also relieved....have been diagnosed with chronic fatigue, fibromylgia, chronic myofascial pain, etc.....7 year survivor of breast cancer and still tired most of time.....gp put me on adderallxr so i can work....

levensweg
Posts: 55
Joined: Jul 2006

I'm a stage four colon cancer survivor. I'm one year out of chemo with a clear report form my Onc, but I had a two week fatigue stint that had me spiralling into depression. My joints ached and my energy was low. I felt anemic, but my blood work was fine. I had similar responses from my Oncologist as well. I feel my energy getting low from time to time, but I've been pretty good overall. I keep physical and watch my diet, but I would like to know more. Can something trigger it? I was fine for a year. what can prevent it? Any tests?...

jlfmiller
Posts: 4
Joined: Apr 2005

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.

auntieque
Posts: 1
Joined: Nov 2012

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

vilamork
Posts: 1
Joined: Mar 2004

yes, I am 3 years out and still very tired. i think it is real and not in your head.
I changed my life. I think you might consider changin your work schedule too. tak e a break .
life is very beautiful outside and enjoy it.
learn new medium.

CancerDad
Posts: 1
Joined: Oct 2006

Hi:
I want you to know that I suffer from the SAME thing... I'll be relatively ok for a couple days if I pace myself, and then I am DEAD TO THE WORLD. My mind says go, but my body literally won't move. I too was SO validated when I read the CURE magazine articles. I also have CHRONIC extreme pain treated with meds and acupuncture. I have seen MANY specialists and am 3 years post dx of Stage 3C Rectal Cancer. I had Oxyaliplatin/5FU/Leucovorin and 8(?? hard to remember)weeks of radiation. Then I had an 8 hour coloanal pull through surgery to resect my rectum. They got clear margins and 10 nodes removed. Turned out, even after therapy,7/10 nodes came back positive for cancer. I had a temp ileostomy, reversed after 6months. I had a heck of a time healing due to the radiation. I ended up stricturing at the anastamotic (connection site) and painfully dilated my anus/rectum daily as well as going in to the hospital for several dilations. Despite all this, the diameter of my rectum was the size of the tip of my pinkie. Despite this, I was still incontinent. To top it all, I have been and still am unable to pee (I self-cath 6+ times a day)and I have no erectile functioning, even with trying every device and medication and needle, since my original surgery. I know you are probably saying-- "you had a crappy surgeon." Truth be told, I knew this BOARD Certified Colorectal Surgeon, had seen his work in the OR MANY times and knew he was well qualified. I believe the placement of the tumor (2-3 cm from the anus and the size of a golfball) caused permanent damage to the tissue and nerves. When I had my colostomy surgery, the surgeon reported SO MUCH scar tissue and adhesions that he couldn't enter the pelvic cavity. Oh, and I DID have Adjuvant chemo... EVEN MORE AGGRESSIVE because my oncologist was so worried with the positive nodes, and the fact I was diagnosed at 31. I had the Saltz regimen for Adjuvant chemo...Irinotecan/5FU/Leucovorin. It was SO brutal I could only complete a couple months of treatment. I am currently "in remission" and am VERY HAPPY for this.

So now I, like you, would like to know how many people ACTULALLY suffer from Chronic Pain and Severe fatige... not to mention decreased cognitive functioning (a neuropsych has evaluated me and said I have a profound deficit in cognitive functioning and short term memory due to chemo). I would just like to hear other stories to know I'm not the only one suffering these "After Effects of Cancer or Treatment."

Fondly,
CancerDad

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

I am a two-time cancer survivor. Stage 3 nasal cancer and stage 2 prostate cancer. I am only 47 yrs old, but after four surgeries I have bouts of fatigue. Doctors cannot figure it out and it is driving my wife crazy because I am tired most of the time. I have researched some Cancer manuals that say Fatigue after multiple surgeries is not uncommon. I have been lucky in the fact that I did not receive chemo or radiation, but the fatigue factor is a very puzzling situation, even for my doctors. I try to excersize as much as possible and try to watch my diet. I don't think the doctors have any answers for fatigue.

granny44
Posts: 1
Joined: Feb 2007

I'm so sorry you all have been through so much - makes me feel almost (but not quite) "lucky". I have (or had, depending on how one looks at it, I guess) State 2b invasive breast cancer; 4 surgeries; chemo (8 rounds) and am supposed to be on entiestrogen treatment, but have stopped taking it for the very reasons described - chronic fatigue, joint and bone pain, neuropathy, "chemo-brain", etc. I haven't read the CURE article, but will get the magazine. I feel relieved to know that others are experiencing these after effects, or whatever they are. I'm not very far past treatment (last chemo was Nov. 11, '06), and was already discouraged because I'm not feeling that much better than when I was on chemo - but now (after reading your stories), I guess I'll just work on adjusting my attitude! Thank you so much for sharing - and blessings to each of you.

tiggertoo's picture
tiggertoo
Posts: 31
Joined: Mar 2003

I am right there with you all. I am an almost 5 yr survivor of Acute Lymphoblastic Leukemia. I had an almost 7 in tumor wrapped around my heart at the time of diagnosis that was spreading. I spent 17 weeks in the hospital over a 7 month period. Only 8 of those weeks were actual chemotherapy, the rest was all the lovely side effects. After chemo I had 22 days of radiation on my heart which caused lung and heart damage, so I now have asthma & 2 leaky heart valves. I "almost" had a stem cell transplant and was given additional radiation on my head, as this cancer reappears in the central nervous system and brain. I am still unable to return to work, due to the severe long-term, late-effects of my treatments. I still struggle with daily acceptance of my "NEW NORMAL". This includes poor long-term and short-term memory, chronic fatigue, low energy, joint inflammation and pain with increased arthritis and bursitis, menopause at 33yrs, mitral valve prolapse, neuropathy in feet and hands, poor flexibility and physical strength & trouble sleeping among other things. Add to the fact that my platelets have been dropping for a year and I have had chronic sinusitis (sinus infections that go on for 5 months and take 3 antibiotics to clear up) and it's no wonder I get more depressed. The more depressed you get, the worse you feel physically and mentally. I try to combat all this with positive "self-talk" and I try to REMEMBER that this is my "new normal" I can't get mad or upset, just try to get thru each day and stay as healthy as I can. I realize that there is no magic pill or cure. My body had significant damage from my treatment. It can't overcome things that wouldn't bother someone else as easily now. It takes my body more energy and strength to get thru what is considered an easy task, like vacuuming. That always wears me out and I can count on more pain from doing it. I talk with a psychologist on a regular basis ( you get 45 min with them compared to 15 min with a psychiatrist) to make sure that I am maintaining my mental health, as I try to maintain my physical health. I have to SCHEDULE fun for myself. It might be going to see a movie, taking a walk on a nice day, getting together with friends, going to a scrapbook store -- whatever it takes to keep me balanced. I volunteer as a reading tutor at my son's school for 30 minutes each week, which helps me to feel like I have a purpose. I just try to do what I CAN do each day and give myself the grace to not be perfect, to make mistakes and to even have "rest days" where I do nothing but rest on the couch or in bed. They seem to help my overall energy.

Yes, chemo-brain and chronic fatigue after treatment are very real, but you can find a way to live with them. Give yourself a break and DON'T expect to live at the same hectic pace you did prior to cancer. Remember to LIVE - cherish each day with family and friends and NEVER give up! Blessings to you all! Tiggertoo

micAbbott's picture
micAbbott
Posts: 4
Joined: Dec 2005

I too am cursed with fatigue. I am going into another bout with cancer after a 7 month remission from Ovarian cancer stage 111c, But even before the new cancer was found I was exhausted all the time. I am sure this is an after effect that should be documented and addressed. Thanks for letting me know I am not alone.

seadawn
Posts: 1
Joined: Nov 2007

I am fatigued all the time too. Having survived cervical cancer stage 3b. 7 weeks of radiation therapy, both internal (brachytherapy), and external and 5 weeks of chemo. That was a year ago, am now cancer free but suffering all the after affects including constipation, nauseous, vomiting, and pain. God knows what other side affect I may suffer since my oncologist didn't tell me nothing about the after affects!!! I have also been having severe heartburn too. I wonder if that's another after affect also!!!

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

You aren't alone. I am an 18 year survivor of NHL and I am just as tired as ever after treatment, maybe worse. I now also have other cognitive problems like forgetfulness and confusion and excluding main points from my conversations which leads to all kinds of misunderstandings. I have other major late effects as well but wont go into them here. I had total body radiation as well.

Good luck with your fatigue issue, all you can do is rest when you can I suppose, I haven't been able to get back to work since transplant.

God Bless.

carolyn17603
Posts: 4
Joined: Sep 2008

im glad im not alone. in 1998 i was diagnosed with molar pregnancy and recieved iv chemo. ive been cancer free for 10 years and im extremely tired all the time. I can wake up and be so tired 3-4 hours later and actually go back to bed even when I was up I didnt do anything to be tired. So what can be done about this? what type of do you see or what blood tests? I already know rest but I am always so tired and its really hard to fuction. What other side effects are there cause my hair still falls out time to time

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I had thinning hair from time to time and I was diagnosed by a dermatologist with stress trauma. Apparently he said that there was a shock to my system (physical or emotional ) and this caused the hair loss and that it goes in cycles with this type of reason for the hair thinning that is why it comes and goes. I forget what the cycles are (how many months) but it made sense. Fatigue, I am the same. I sleep and 3 or 4 hours later have to rest. Because I have so many other reasons for the fatigue they can't actually diagnose Chronic Fatigue Syndrome but one specialist is sure that is what it is. Do you have flu like symptoms that come and go for no reason? Sore throats same thing? These are other symtoms of CFS. There are sites that tell you about it online. It was suggested that accupuncture might help the fatigue but it's too expensive for me to keep up.

rscherer
Posts: 2
Joined: Mar 2009

I am a MDS/AML cancer survivor, I was wondering if any other survivors recieve long term disability payments. I cannot manage at a job well enough to be successful, I need ADD meds and sleep meds to sleep and function, I worry all the time about being cut off of disability payments, does anyone have these same concerns and problems.

DrJack
Posts: 11
Joined: Jun 2010

I share ur issues and heres my email if I can help support u I am on Disability and I sleep 12-14 hrs a day n wake up tirred LOl so whatever jackgrenan@netscape.net I am a psychologist who cant work . Best 2 You

terato's picture
terato
Posts: 384
Joined: Apr 2002

In my effort to maintain a saturated fats and reduced sodium diet, I denied myself red meat and other protein rich foods, becoming borderline anemic. My oncologist advised me to treat myself to a hamburger one a week, yielding a return of my hematocrit and hemoglobin to well within the "normal" range.

Stress and sleeplessness, due to worry about damn near everything also continues to sap my body of energy leaving me fatigued, despite my dietary progress. What generally happens is that I become totally worn out to the point of falling asleep on the couch early in the evening and sleeping for 10 or 12 hours to catch up on the sleep I didn't get that week.

I find that keeping my life as simple as possible is my key to retaining what remains of my sanity. I now work in a low-paying field that allows me to conclude my work day by 3PM; keep my monthly expenses low by not subscribing to either cable or cell phone service; and, using my car only for getting to and from work, getting in my cardio by hauling my groceries in an old gym bag. By keeping it frugal and simple, I can have more energy for what counts!

Love and Courage!

Rick

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Carolyn asked about cancer treatment side effects so I will throw out a few of mine. The hair problem is something I have not faced. But 5 years out of treatment I always have dry skin. I can never get enough fluids. Memory loss! When my smoke detector goes off to remind me I have something on the stove its not a good thing. Or I am listening to the rain on the roof and my poor dog is standing out in it. Its lucky he can't talk and has a short memory too. Everytime I go to the store someone keeps moving my truck because I can't find the dang thing! Learning new things is a struggle. Like Terato I have no use for adding stress in my life. I would rather live in a tent in the woods. But I help others in my area with cancer as it has its rewards. I have no use for a cell phone because I hate phones. For years everytime I got a call it was bad news. My immune system is half of what it was. If there is a virus or infection going around I will proubly have to deal with it. A good day is when I don't wake up in pain. Radiation progressed arthritis in my spine and it finally put me on disability. My neck fell apart and my left arm quit working. It took 3 months to get it back. I try to do things around the house. But as my coordination is off sometimes, my wife has very few good dishes left. And after a cup of coffee goes flying across the living room or kitchen my wife usually tells me to sit my butt on the couch. My kids just say "Geeezzz Dad". I am about to make a T-Shirt that says "Cancer Survivor, One day at a time, AS IS NO WARRANTY". That might remind my family that I still struggle everyday and I am not perfect! Slickwilly

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am a 18 year survivor of NHL and the tiredness just gets worse for me. It's common to have fatigue right after treatment and the fatigue can get worse over time. Many have reported this. Like someone else said on here all you can do is rest when you have to and try and not overdo it but of course as soon as I am feeling up to doing something FINALLY I have to overdo it or it never gets done. Like someone else said, mine too goes in patches, a couple of days feeling not too bad then flat out for a few days recouperating. Sheesh. No choice but to try and work with it. Unfortunately oftentimes friends/family don't understand why we aren't fine after treatment so this adds another dimension to our issues. This board does understand and that is invaluable. Blessings to all, Blueroses.

tamiwv
Posts: 3
Joined: May 2009

Hi blueroses - I had ovarian cancer in 2004. I ended up with Stage IIIC. I worked up until last November when I couldn't do it anymore. The overwhelming fatigue is awful. I can't think clearly. Only have about 4 good hours a day to do what I need to do. I've tried provigil, but it stopped working after 3 weeks. My doctor has put me though I don't know how many tests - all came back normal. I recently read the article about Post Cancer Fatigue and was relieved to know I'm not crazy. I'm 51 and thought that leaving work would help me - it hasn't. Same old fatigue is still here. I exercise and improved my diet. Do you happen to know if SS Disability supports Post Cancer Fatigue?

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I see a late effects doctor at Sloan Kettering who specializes in those suffering from treatments that cured their cancer. In my case, over 19 years ago, for Hodgkin's Disease. Though I don't recall the conversation from last October exactly, we did talk about the fact that my fatigue has increased, especially following emergency heart surgery (late effects related) last April. The important thing that he told me, it was "normal". It was definitely a relief to have this conversation in front of my wife, totally unprompted. So at least, now, she knows I'm not just being lazy, and I don't feel like it.

As far as social security covering disability for fatigue, not too sure. Perhaps this is something that can be talked about with your doctor first, and then perhaps a representative from your social security office.

That being said, under the last presidency, the ADA (Americans With Disabilities Act) was amended to include (and please forgive my political incorrectness), that people with cancer, being treated from cancer, or dealing with issues as a result of, are considered disabled. The writing is actually more detailed than my summary, but perhaps that may give hope that since we fall under protection of the ADA, that it would make it more possible and less complicated to get SS benefits.

I don't know if that answered your question, but I hope it gave you some direction.

Paul E. (hodgkoid2003)

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Big topic. Well first of all I live in Canada so if you aren't in Canada you would have to check with your disability folks wherever you are. I know that here you can receive disability for Chronic FAtigue Syndrome but getting that diagnosis is near impossible especially for those of us who have been through cancer treatments because there are a whole number of things that can cause our fatigue and the way they diagnose CFS proper is that you have to have long lasting fatigue with no feelings of rest with NO OTHER REASONS FOR YOUR FATIGUE. With all the meds we had and may be on that also cause tiredness or from just stress alone there is no way they will diagnose us.

I have been on disability since my transplant which was in 1991 because of fatigue, a condition they say is 'like fibromyalgia', plus early arthritis (from the radiation they feel) and a damaged heart from chemo. There are other medical issues I deal with but that's besides the point.

If you have a really good GP (family doctor) who can stand up for you and your fatigue that is causing you so much distress you may be able to qualify for disability especially if you have other health issues that also keep you down. Here we have two different disability applications, one for straight one issue disability situations and another for a disability as a result of multiple physical problems.

Take care, Blessings, Blueroses.

SZQ's picture
SZQ
Posts: 2
Joined: Nov 2008

I had cervical cancer surgery/treatments back in 1998 & to this day even THINKING about doing something as simple as cleaning my glasses, blowing my nose, much less get up to go to the bathroom is a MAJOR energy drain.

I have had dieticians alter my food intake thru the years as the chemo/radiation has done damage internally. With cervical cancer I had a radical hysterectomy in which ALL my female parts were removed.

This included cutting thru my urethra tubes (what my pee passed thru), radiation, which focused on my lower GI to get rid of any cancerous lymph nodes outside the uterus, causing internal sunburn.

Result: making absolutely certain I knew where EVERY bathroom was as anything I eat/ate would go thru me like water or give me severe diarhea. Dehydration is a factor in FATIGUE.

Treatments also affected my mental health due to loss of natural horomones, my vision, hearing loss, taste buds, to name a few causing depression which factors in fatigue. Life as I knew it changed forever.

I am also a recovering addict/alcoholic (18 yrs) & by the grace of god & support programs I am learning to turn negatives into positives. It's a daily process & I still struggle but life is good:)

Hang in there!!

lajolielolita's picture
lajolielolita
Posts: 1
Joined: Dec 2009

I am hodgkins lymphoma survivor. I was diagnosed in 2000. I am only 26 and I feel like I am 86. All my doctors say the same thing... Well you have a hypothyroid so lets check those labs and see if its not your thyroid. Yep, it never is! No doctors seem to have any answers and yet everyone close to me either think I making my fatigue up or they think they have a diagnosis for me. I wish I could make people understand how I feel. I am sooo tired almost all the time and adderall is the only thing that makes me feel like a normal person with a normal energy level. I hate to be a person that depends on a drug but the truth is, I do. Without adderall I wouldn't be able to work, heck I wouldnt be able to get out of my bed because I just feel that tired. But i cant tell this to my family and friends because they cant understand. I dont know how and I dont know why but having cancer/chemo/radiation changed me and I feel less alone to know there are others out there that feel the way i do.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I am relatively knew to this board but I am completely familiar with fatigue. I am three years out of treatment and still tire easily. I was a construction worker prior to diagnosis. When I worked I usually worked seven days a week for months on end. Then the job would end and I would go hunting or fishing. The last job I had was cleaning my carpet one spot at a time. IF I did two spots I got so dizzy that I was stumbling and tripping all over the place.

I need to get back to work. I don't have the strength to do what I once did. I don't have any education either so a new career for an over the hill dirt head does not look good either. a I need to be able to go back to work. that means I need to get over this fatigue. I feel like I am being lazy. But no matter how I feel I still do not do anything. I don't do anything because I do not have the strength and stamina to continue. I have tried working through the fatigue. All that does is set up another set back. These set backs make me reticent to do anything at all because getting set back is depressing which further complicates my recuperation.

There are people here that know what you are talking about. At least one...ME!!!

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

You are normal! Post cancer fatigue is normal, and perhaps may be expected. I would hope that with you having been treated in 2000, you are followed up fairly closely, and if so, they should be explaining that to you.

Family and friends, to be honest and fair, may never understand what we feel. All too often, just as we hope to, they just want us to return to normal following our treatments and prognosis of remission. Unfortunately, that's not the case.

Hopefully you see someone who specializes in long term survivorship issues. I know it has made a difference for me.

Paul E (Hodgkoid2003)

Crowynrowyn
Posts: 3
Joined: Jan 2010

Thank you all! I thought it was just me! I was diagnosed November 2007 with breast cancer, underwent chemo while I continued to work as a prison guard, right up to the last treatment. When I went back to work I collapsed on the rec yard and was sent home. I had a bilateral mastectomy with 16 lymph nodes removed under my right arm and then the surgeries started every 2 months for reconstruction, with complications. I have one procedure to go. My father passed away 10-30-09 and the funeral was in Mich. and I live in Tx. My son had to take me and I was so tired when we got there I slept for a day and night. I get up to do things and my son (34 yrs. old) gets onto me to rest. He says that all he has to do is look at my face and he can tell how exhausted I am. I try to pace myself and it doesn't seem to help. This is the most negative thing about the cancer. Iwound up retired from Tex. Dept. of Criminal Justice after nearly 15 years at a job I really liked. Because of what I did they couldn't work with me at all. Thank you all for making me feel better. Chemo brain is another thing I thought I would get over and haven't yet. That scares me. I'm 61 years old. The balance thing happens too, I wear tennis shoes, even with dress clothes. To everyone else around me I make jokes and laugh about it all, but inside it does scare me. My oncologist just says it will improve with time.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

crowynrowny,
Your definitely not alone out there. I finished treatments Aug. '08 and still deal with the fatigue at times. Good days and bad days. It's gotten much better over time. I also had a real problem with the chemo fog, which has also gotten better. I no longer get lost driving to places that I drove on a daily basis...good thing my vehicle knew the way! I was always a good speller, but the chemo affected that somehow. I went out and purchased a little gadget that fixed that problem:) The chemo damaged my inner ears and vertigo and tinitis were a big problem. The doc gave me a pill for the vertigo that wasn't real helpful...waiting 20 minutes for it to work didn't help when I needed a fix right then. My acupuncturist put me on some herbs that cured that in two weeks time. Don't know what it was, but the episodes are far and few in between now. The brake pedal and floor board of my truck appreciate the discontinued abuse at red lights and stop signs these days! Hang in there...one day at a time!

janimil
Posts: 6
Joined: Feb 2010

I had BC in early 2007--surgery, chemo, radiation, and other complications along the way. It sent my body for a real loop, and the fatigue and cognitive issues are persistant. I am on disability, which is something I never thought I would do in my life. But what choice to I have? It is hard dragging myself out of bed in the morning. I sometimes wonder how I can be so tired after I have slept all night. It goes in a roller coaster, and try as I might, I have not found a pattern to it. My "senior moments" from the chemo brain (I guess--what else could they be?) bother me, because I am in my late forties, not nearly a senior yet! I hope and pray someone, somewhere, does some real research on post-treatment effects we deal with. I need answers for my doctors, for the disability poeople, for family and friends, and for myself!

northernvalentine
Posts: 1
Joined: Mar 2010

Hi, I also have long term fatigue 2 years on. I had surgery for breast cancer almost 2 years ago, and have had very poor energy levels ever since, and persistent sore throat which gets worse when I overdo it. I had no chemo or radiation so I don't think its the effect of treatment, other than surgery and of course the cancer itself.

My GP has diagnosed it as Chronic Fatigue Syndrome, but sadly I know all about that as my husband has it, so while we both have fatigue, our other symptoms are different.

The best way I've found to manage it is by pacing myself and never over doing it, and by eating a really healthy diet and never drinking alcohol.

As someone says above its about simplifying life and stripping it back to the basics of what you have to do, and not worrying about trying to do anything more. Its hard if you've been a busy active person before, but ultimately a slower pace of life has its own rewards too.

It helps to know I'm not alone as my cancer doctors seem to be clueless about the fatigue.

kkkelley1's picture
kkkelley1
Posts: 22
Joined: Oct 2009

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

nanagrandma
Posts: 40
Joined: Oct 2007

I to have felt the same way, thought it was just me. I just took a voluntary layoff from work becuase of being so tired all of the time. Glad to know i'm not the only one.

merlinn
Posts: 1
Joined: Jan 2013

jacky_78
Posts: 1
Joined: Feb 2011

i am 32 i had non hodgkins and finished treatments in 08 when i saw your post it sounds just like me i say that i feel 80 everyday they arent giving me anything for the fatigue and i already had my hours cut back to 6 at work and im falling asleep my family thinks im crazy and i just cant take this feeling much longer also i never was a big drinker or anything just on occasion and i cant even do that it takes everything out of me and my whole body aches this is terrible and i think these oncologists need to look into the later effects and at least try to help people deal with them

nursejenn4
Posts: 3
Joined: Mar 2011

I had Hodgkins in 1999-2000 when I was 15-16. I am almost 27. I have horrible depression and anxiety now. Finally seeing a therapist for it. Never thought I would beat cancer and go to nursing school, become a peds nurse that takes care of kids with cancer .... run a marathon for TEAM in Training .... and let me depression and anxiety get this out of control. I am sooooo unhappy. I cry all the time. It's the worst it's ever been. I think it all stems back to my diagnosis :(

Jenn

LRoz
Posts: 3
Joined: Mar 2010

Hi, I'm six years into remission & I understand what you're going through. I am tired all the time. I had Stage 3B cervical cancer. I had massive radiation treatments, & 4 low dose chemo. My doctors told me you will never get all your strength back, & the fatigue stays with you always to some degree. Some people have it worse than others. I have good days & bad days! It just depends on what I am doing that particular day! Good Luck! Take things one day at a time!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I've been away from treatments for 8 months and feel the aches and pains. What helps me is forcing myself to move -- walk, lift weights, yoga, elliptical machine. Our bodies are meant to move and just as with arthritis, professionals tell us to move as it helps alleviate the pain.

Sad to say, but none of my doctors knows much about after affects from the treatments. Thankfully people on this board are up on it and we can all group together and know, we're not alone!!

Hang in there~

kkkelley1's picture
kkkelley1
Posts: 22
Joined: Oct 2009

You mentioned yoga. I;ve been hearing a lot on the positive side of this. Do you feel that it actually helped you post treatments. With mental alertness and fatigue?
kim

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

About 8 months after my second treatment for NPC Cancer I found my self so week I could hardly get up, went to the doctor and they check and found my thyroid had stopped working. I am now on Levothyroxine and feeling great just cold all the time.

meena1's picture
meena1
Posts: 1005
Joined: Oct 2008

I am not alone! I am so glad i found this post. I was diagnosed in july 2008 with breast cancer with mets to bones. I finished treatment last May and i am so tired. I used to be very active, did everything. Now just getting out of bed in the morning is terrible. Sigh. i have to work a full time job for the insurance. And i am suffering, i also have chemo brain. I keep mentioning this to my oncologist, and he says your blood work is good. Of course, everyone thinks i am "fine" since i am done my treatment, but i feel like i am spiriling into a deep hole. My supervisor is constantly at me, and my ibs kicks in. It never ends..

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

You mentioned that doctors don't know much about side effects of the treatments but there are clinics in the United States called Late Effects Clinics that specialize in just that. Now many of them are for those diagnosed as children, with cancer, and now are grown and experiencing side effects but there is one for adults diagnosed as adults. That late effects clinic is in Boston at Dana Farber. It's called The Perini Clinic at the Lance Armstrong Clinic there and if you call them they will put you in touch with someone who can guide you.

Give it a shot. They have a website online too, just google, Lance Armstrong/Perini Clinics - Dana Farber.

Hope this helps.

Blessings,

Bluerose

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You and I have exchanged posting on another side and yes I did start to research these clinics. Great idea and yes here in St Louis the only ones are for young/early diagnosed case. Will try and call the Perini Clinic and go from there.

As you've mentioned, when you had the treatments some 20 yrs ago it was so different. Now people like yourself are the after affect patients and see more docs agreeing yes there's side affects from treatments. Now the start of where do we go from here???

I'll check further and post what I find.

BTW, had my 4-month oncol appt and all is still NED..yippee! So....the good eating, exercising, less stress, and imagery techniques must be helping. And..lots of praying!! Now if I could find that "less" stressed job that I can do from home...

Thanks again,
Jan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Glad to hear that you had great results. You are home free I just know it. Keep up that praying and imagery, I believe in both big time.

Yup let me know what you find out about after effect clinics for adults. Perini is the only one I know but probably are others.

Take care.

Blessings,
Bluerose

Homeus12
Posts: 2
Joined: Apr 2010

I have had dieticians alter my food intake thru the years as the chemo/radiation has done damage internally. With cervical cancer I had a radical hysterectomy in which ALL my female parts were removed.

This included cutting thru my urethra tubes (what my pee passed thru), radiation, which focused on my lower GI to get rid of any cancerous lymph nodes outside the uterus, causing internal sunburn.

Result: making absolutely certain I knew where EVERY bathroom was as anything I eat/ate would go thru me like water or give me severe diarhea. Dehydration is a factor in FATIGUE.

Treatments also affected my mental health due to loss of natural horomones, my vision, hearing loss, taste buds, to name a few causing depression which factors in fatigue. Life as I knew it changed forever.

I am also a recovering addict/alcoholic (18 yrs) & by the grace of god & support programs I am learning to turn negatives into positives. It's a daily process & I still struggle but life is good:)

Hang in there!!

globleinfosol
Posts: 1
Joined: Oct 2010

really you take a great step. today its going to be the biggest disease in the world. hope i will also be able to contribute somewhere.

pamysue's picture
pamysue
Posts: 105
Joined: May 2008

I have been in remission for 2 years now. I did not see the article you refer to, but my oncologist blames this on the cancer/chemo. He tells me when I have to sleep, which can be a LOT, to sleep. But to make an effort to get up and get things going to see if I can. I do not drive due to neuropathy and mental problems, but I live in the country and there is usually things to do. I miss the summer.

Good luck to you.

pamysue's picture
pamysue
Posts: 105
Joined: May 2008

I

Ten_shi
Posts: 1
Joined: Jul 2011

Diagnosed with breast cancer in 2009, I had a mastectomy and chemo and for most of the year and a half since completing chemo I have had joint and muscle pain and fatigue. The biggest help has been hydration. I didn't know until I went to physical therapy for a shoulder injury that it's pretty common for cancer patients to get chronic dehydration and that is a big factor in joint and muscle pain. Chronic dehydration is different from simple or immediate dehydration - your body will gradually starve muscle and joint tissue of needed fluid so that your CNS and circulatory systems have the fluid they need. It doesn't show as much when in treatment because people tend to be less mobile and there are fewer demands on the muscles and joints. It took months to get to the point of chronic dehydration so it's taking months for me to get back to a normal level of fluid in all my joints and muscles, but I can feel an improvement already, and it's only been 2 months. I've never been much on drinking water so I just treat it like medicine and take my 6 doses a day! Between taking a multivitamin and a multi-mineral tablet a day, lots of fruits and veggies and the water, I'm starting (barely) to feel normal.

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