Post Cancer Fatigue

pamysue

I am also a rectal cancer patient
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

double post :-( I hate it when this happens
I

bluerose

jazzy1 said:

Not the only one~
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~

Hey Jazzy
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

bluerose said:

Hey Jazzy
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

Bluerose
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

nursejenn4

lajolielolita said:

I am always tired and no one understands!
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.

I had Hodgkins too!
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

bluerose

jazzy1 said:

Bluerose
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

Yay Jan
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

Ten_shi

Fighting pain and fatigue
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.

questing4health

Post Cancer Fatigue
I went through radiation treatments for Hodgkin’s some years ago. Two years later, I started suffering bouts of severe lightheadedness and fatigue. Here’s an article suggesting that radiation treatments can damage sensors involved in the regulation of blood pressure: http://jp.physoc.org/content/553/1/3.full.pdf. I seek others who share my condition so that we might benefit from one another’s experience and collaborate in pursuit of effective treatment. Please email John at questing4health@gmail.com.

Hondo

questing4health said:

Post Cancer Fatigue
I went through radiation treatments for Hodgkin’s some years ago. Two years later, I started suffering bouts of severe lightheadedness and fatigue. Here’s an article suggesting that radiation treatments can damage sensors involved in the regulation of blood pressure: http://jp.physoc.org/content/553/1/3.full.pdf. I seek others who share my condition so that we might benefit from one another’s experience and collaborate in pursuit of effective treatment. Please email John at questing4health@gmail.com.

Hi John

I too suffer from BP problems radiation to the neck damaged my thermostats as I call them, my doctor said that my Carotid Sinus is the problem. When I stand up it is too low, when I lay down it is too high. What a case to be in, but life is still so sweet.

Not sure what your cancer was but visit us on head & neck

Thanks
Hondo

cathyp

questing4health said:

Post Cancer Fatigue
I went through radiation treatments for Hodgkin’s some years ago. Two years later, I started suffering bouts of severe lightheadedness and fatigue. Here’s an article suggesting that radiation treatments can damage sensors involved in the regulation of blood pressure: http://jp.physoc.org/content/553/1/3.full.pdf. I seek others who share my condition so that we might benefit from one another’s experience and collaborate in pursuit of effective treatment. Please email John at questing4health@gmail.com.

fatigue
I was treated w/rads and ABVD for Hodgkins Lymphoma also. My PCP says there is no clinical reason why I should feel any more fatigue than any other 50 yr old NOT treated for cancer. All my other doctors and I obviously disagree. After that comment from my PCP I feel it may be time to find a new one. Wonder how hard it would be to find a PCP willing to take on a Long Term 3 time cancer survivor w/many LT effects from treatment.

Hondo

cathyp said:

fatigue
I was treated w/rads and ABVD for Hodgkins Lymphoma also. My PCP says there is no clinical reason why I should feel any more fatigue than any other 50 yr old NOT treated for cancer. All my other doctors and I obviously disagree. After that comment from my PCP I feel it may be time to find a new one. Wonder how hard it would be to find a PCP willing to take on a Long Term 3 time cancer survivor w/many LT effects from treatment.

Hi Cathy

I am head & Neck NPC Cancer 3 times; it seams more and more that a lot of us are here and still alive doing well.

Wishing you well and hope you find the doctor you need
Hondo

bluerose

Hondo said:

Hi Cathy

I am head & Neck NPC Cancer 3 times; it seams more and more that a lot of us are here and still alive doing well.

Wishing you well and hope you find the doctor you need
Hondo

Words echo back from my ex about fatigue, reading between lines
My marriage broke up about 14 years ago I guess it is now and I remember now what hurt then but not as much as it hurts now that I know what is going on more clearly.

When I asked my husband at that time to leave he had devulged that there was someone else which hit me hard as I had no idea and he had never given me one signal he was not happy so that was a shock in itself. Anywho that night the conversation was short but nasty as you can imagin. One thing he said now plays over in my mind because in part of the chronic fatigue I have battled for years after the treatments were over. I am a 25 year survivor.

At one point in the conversation, speaking of this other woman, he said 'well at least she has a life'. OMG. We had two young lovely children then and even though I was still recovering long after my treatments were done I thought we had a life. Guess he didn't. Today though that phrase of his hurts the most I think because I realized then but only have been validated by docs not too long ago that yes in fact chronic fatigue is a big side effect of treatments - maybe for years and years to come.

My ex thought of me I guess as lazy and never wanting to do things with him and the family but I just couldn't, always far too fatigued and had other side effects that kept me down and still do. Yes he didn't know of the whole side effect issue either one could say, but why would I lie? Guess he didn't truly believe me either with all of my physical issues, always thought he did. Sigh.

I am always so joyous to see survivors talk about how supportive their spouses are, it's so important. Believe in survivors, they know their bodies best. Be there for them. That's better than medicine.

Blessings to all.

Bluerose

soblest6

bluerose said:

Words echo back from my ex about fatigue, reading between lines
My marriage broke up about 14 years ago I guess it is now and I remember now what hurt then but not as much as it hurts now that I know what is going on more clearly.

When I asked my husband at that time to leave he had devulged that there was someone else which hit me hard as I had no idea and he had never given me one signal he was not happy so that was a shock in itself. Anywho that night the conversation was short but nasty as you can imagin. One thing he said now plays over in my mind because in part of the chronic fatigue I have battled for years after the treatments were over. I am a 25 year survivor.

At one point in the conversation, speaking of this other woman, he said 'well at least she has a life'. OMG. We had two young lovely children then and even though I was still recovering long after my treatments were done I thought we had a life. Guess he didn't. Today though that phrase of his hurts the most I think because I realized then but only have been validated by docs not too long ago that yes in fact chronic fatigue is a big side effect of treatments - maybe for years and years to come.

My ex thought of me I guess as lazy and never wanting to do things with him and the family but I just couldn't, always far too fatigued and had other side effects that kept me down and still do. Yes he didn't know of the whole side effect issue either one could say, but why would I lie? Guess he didn't truly believe me either with all of my physical issues, always thought he did. Sigh.

I am always so joyous to see survivors talk about how supportive their spouses are, it's so important. Believe in survivors, they know their bodies best. Be there for them. That's better than medicine.

Blessings to all.

Bluerose

Fatigue, Husband, Chemo-brain!
Hi, I am a 3 yr survivor of Stage 3C Breast Cancer, in mid-forties, with teens and little kids. I was diagnosed in June 2008, surgeries, chemo, radiation, hysterectomy, more surgeries, with last one being Dec. 2009. Now on Femara. Within my 18-month "treatment" period, I was put to sleep six times for various procedures, then 3 more times because I had some digestive tract bleeding and a other issues that had to be investigated. We have a motto at my house, "Chemo sucks, thank God for chemo." I dont really know if its the chemo or all the surgeries, but, boy, I still feel like I have had my butt kicked hard! And as I read on another forum, I had the marriage that didnt survive. He and I both lost our dads about the time I was diagnosed, and he decided to drink his way into his 50's. He wanted me to go out and act like a college kid again (and to be his designated driver), hang out at bars and such, but I was just SO TIRED, plus had 4 teens to try to keep under control. So he found someone else to party with. Now I am getting a divorce after 25 yrs of marriage, and I have to manage my 6 kids (five still live at home plus a new grandbaby, yay!) and our finances, etc, by myself. I am so tired of feeling like a nutty hypochondriac! My children call me Dorie, after the forgetful fish on Finding Nemo. My sisters call me Aunt Clara. I try to stay active and exercise, but my BP is whacky now, and when I exercise I get so short of breath because my bp is high. I dont want to be this person! I used to be smart and active, have a high education and I worked in the medical field, but I have worked very little since getting cancer. I am too disorganized and way too fatigued to work full-time, so I do short fill-in work only. I actually FORGOT to go to work one day, and another time I didnt remember going to work, called my boss crying, and totally flipped when I realized I had FORGOTTEN an entire day at work. My onco, I swear, she's almost as dingie as I am, I question the fatigue but my bloodwork is amazing, and she blames everything on Femara.
Sorry, I said too much, I am having a week of insomnia and I am trying hard not to take a Lunesta, feel like the only person alive at 230 am, and it was a blessing to log into this forum and see posts from folks with similar issues. Now when I take my 2-hr nap tomorrow when the kids are at school, I will not feel like a failure!
This forum should be required reading for all spouses and caregivers of cancer patients and survivors! Thanks....

galtgirl

soblest6 said:

Fatigue, Husband, Chemo-brain!
Hi, I am a 3 yr survivor of Stage 3C Breast Cancer, in mid-forties, with teens and little kids. I was diagnosed in June 2008, surgeries, chemo, radiation, hysterectomy, more surgeries, with last one being Dec. 2009. Now on Femara. Within my 18-month "treatment" period, I was put to sleep six times for various procedures, then 3 more times because I had some digestive tract bleeding and a other issues that had to be investigated. We have a motto at my house, "Chemo sucks, thank God for chemo." I dont really know if its the chemo or all the surgeries, but, boy, I still feel like I have had my butt kicked hard! And as I read on another forum, I had the marriage that didnt survive. He and I both lost our dads about the time I was diagnosed, and he decided to drink his way into his 50's. He wanted me to go out and act like a college kid again (and to be his designated driver), hang out at bars and such, but I was just SO TIRED, plus had 4 teens to try to keep under control. So he found someone else to party with. Now I am getting a divorce after 25 yrs of marriage, and I have to manage my 6 kids (five still live at home plus a new grandbaby, yay!) and our finances, etc, by myself. I am so tired of feeling like a nutty hypochondriac! My children call me Dorie, after the forgetful fish on Finding Nemo. My sisters call me Aunt Clara. I try to stay active and exercise, but my BP is whacky now, and when I exercise I get so short of breath because my bp is high. I dont want to be this person! I used to be smart and active, have a high education and I worked in the medical field, but I have worked very little since getting cancer. I am too disorganized and way too fatigued to work full-time, so I do short fill-in work only. I actually FORGOT to go to work one day, and another time I didnt remember going to work, called my boss crying, and totally flipped when I realized I had FORGOTTEN an entire day at work. My onco, I swear, she's almost as dingie as I am, I question the fatigue but my bloodwork is amazing, and she blames everything on Femara.
Sorry, I said too much, I am having a week of insomnia and I am trying hard not to take a Lunesta, feel like the only person alive at 230 am, and it was a blessing to log into this forum and see posts from folks with similar issues. Now when I take my 2-hr nap tomorrow when the kids are at school, I will not feel like a failure!
This forum should be required reading for all spouses and caregivers of cancer patients and survivors! Thanks....

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.

Moralesa

I just ended radiation about
I just ended radiation about a month and a half ago but I have always been a very active person so it is weird for me to feel fatigued from things as little as walking up stairs or talking and walking at the same time, or even just walking. I start lacrosse practice next week so I hope I will have enough energy to be okay through that. It helps to here this happens with others as well.

jmsuarez

Moralesa said:

I just ended radiation about
I just ended radiation about a month and a half ago but I have always been a very active person so it is weird for me to feel fatigued from things as little as walking up stairs or talking and walking at the same time, or even just walking. I start lacrosse practice next week so I hope I will have enough energy to be okay through that. It helps to here this happens with others as well.

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!

hebrews1014

FATIGUE
Indeed the fatigue may last for a long time. Wish i could tell you different, but our bodies were poisened to help free us from this cancer. Bless you.

Hondo

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!

Hi jmsuarez

Same here I get very weak at times and can’t explain it, all I can do is to lay down in bed. I been to all kinds of doctors for it and every test they run showed no problems. I did start taking an Iron vitamin and it does seam to help some, hope it works for you.

Hondo

DrJack

sos
same I sleep 12-14 hrs a day n am still tired n need naps sucks!!!! but better than cancer n chemo!!!

DrJack

rscherer said:

Post cancer fatigue and memory loss
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.

yess
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