RADIATION FATIGUE - POLL

mumito

Finished  my rads last Feb.Still totally lacking in energy.According to last onc checkup bloodwork is fine no explanation to how I am feeling. Been exercising regularly. have to drag  myself to the gym. Doesn't seem to help.

cancergrl

I had a lumpectomy followed by 5 days of radiation via the Contura Balloon.  I became extremely fatigued after my first day (2 treatments).  It was compounded by the discomfort of the balloon and nausea.  Nausea might have been caused by the antibiotic i was taking to prevent infection (high risk due to balloon).  Pretty substantial fatigue continued until 4 days after the treatment was completed.  I'm now almost 1 week post radiation and my energy level is good.  I'm still having quite a bit of discomfort from the seroma's that have developed post lumpectomy and balloon.  Still have intermittent nausea, too.  I have not had chemo.  I see the oncologist today to talk about adjuvant treatment options.  I'm returning to work on 7/20.  My heart goes out to all of you!

LynnVA

I'm almost 2 weeks out and just now starting to calm down.  I also had bad anxiety and could not sleep.  When I did it was  fitfull and never for very long. I was then and now still tired but have a very hard time shutting down and getting the sleep I need.

 I am starting to feel so much better now.  Saw Rad/Onc today and she said when I crash I will crash hard and to calm down, I did it and its over.  Thank God!

CHER07

I am 12 days out from my last 35 treatments of radiation. I had 12 weeks of chemo with 2 weeks between starting rads.

The fatigue hit me like a Mack truck the last week of treatment and has only gotten worse. Man!! I have never been so tired,, just wanna sleep all the time. But sleep doesnt seem to help at all no matter how much. Get so tired & frustrated being tired that I cry alot too. I did start Femara last week too, so i dont know how much is what, but I do know i can hardley function. The Dr. says it should be 4 to 6 weeks before i feel much better. Encouraging, Huh??

minniemouse592000

I have to say I started getting very tired after the first week or rads, I am not in my fourth week with one more week and one day left to go, and the last week is with the boost so they will be 5 boost.  I have also been nausated for the last week, for me this has been a real tough time.I still am working full time but I sleep when ever I can when I am at home.  I know I will be glad when this is all over,  Mary

Leah_S

For me the fatigue started the second week of treatment and is getting worse each day. Not only do I need more sleep, but I also feel extremely tired and lack energy all the time.

Leah

Ainm

I'm on the second last day of 15 sessions (dose dense). I was tired before I ever started RT as I had very bad pain and discomfort left over from chemo which I finished just 4 weeks before starting rads.  My chemo was 4AC and 4 Taxol on a 14 day cycle. The AC got to me by the 3 session and two days after my first Taxol I started with severe bone and musle pain which stayed with me right through the 4 sessions and even now I still have residual pain from it.  I see my onc today and he will be starting me on Tamox - I can't imagine ever getting my energy back!!

wwgoddess

Hello---I only have 1 rad treatment left of the scheduled 33.  I have been awfully tired and therefore at times-- quite emotional.   I've been fortunate that I've not worked through the treatments--my rad  technician suggested taking at least 2 weeks before I return to work.  Now wondering if will have the energy to do my job---am a occupational therapist who works with children and adolescents in the mental health field. If possible , thinking maybe 2 more weeks of sick time and then add on vacation time for 2 weeks.  Seems lately always question my judgement--just want to return to work and be my old jovial self and not have people worrying why I look so tired.  What to do??????  Any ideas???

Shirlann

Hi, dear sisters, please remember, we have a sort of form of radiation sickness.  Your rad onc will deny this, but it is true.

This can hit you early or late, some of us never have it at all.  Depends on your body and general helath too.

I was helped greatly by 1000mg of Vitamin C daily, with a good B Complex, Fish Oil and Calcium. I don't know if any of this really helps, it is impossible to tell, but sure can't hurt to try and get your energy back. (DO NOT start this vitamin therapy until AFTER treatment is over)

I know that for some of us it is the whole thing.  Basically a year of fear, panic, pain and feeling ill.  This causes a form of Post Traumatic Stress Syndrome.  Just like the vets.  So give yourselves and your poor bodies a break and rest all you can and build up your bodies with good, fresh food, lots of water and plenty of rest.

Gentle hugs, Shirlann  (Getting close to 11 years post treatment)  

JudyMc

So glad to learn about the discussion board, because I thought I was crazy - made it thru 35 treatments including 5 boosts, felt great.  Now, 2 weeks later, I feel completely wiped out.  I'm exercising to try to keep the fatigue in check.  Glad to hear others have had the same experience!

basketnut3

I had 12 chemo treatments, mx, 33 rads.  I think I was tired from the running to radiation.  I worked as a teacher all day then drove 1 hr to radiation then waited for my turn...usually on time but a few times with broken machines I waited over an hour to get in...then 30 minutes home.  My family just had to deal and doing the cooking and cleaning.  The hard night was Wednesday night when I went straight from rads to church and got home about 9pm.

My skin broke down the last week during the boosts.  It was oosing yellow stuff so put on antibiotic cream.  It just kept getting worse after rads were done.  Finally called the nurse who told me to use aquaphor and it cleared up and healed.  Thank goodness for my surgical cami that would hold my prostetic.  I was too big to teach lopsided even though I know no one would have said anything to me.

 Still have tired spells.  Is it due to chemo, rads, surgery, or laziness...who knows.  But the tiredness during radiation did help me get off my sleeping pills.

KAK

Listen, ladies, I gotta tell you that after getting good & sick of the big brush-off from rad oncs on this, I got my pcp to order some blood work & both my red & white cells counts are low, not horribly so, but below normal & enough to account for how I feel.  And I eat extremely well, rest enough, all that, & don't have anything else going on.  And I'm 9 months post-rads.  So, I started researching this & found out that this long-term fatigue is infamous among cancer patients & the subject of lots of research.  And yet we get the brush-off even tho' there are ways to treat it & lots of legitimate things to check & we know that long-term destructive effects of rads that are tangible & measurable.  So, don't get me started on the docs not doing their jobs because I work in healthcare & it pisses me off.

Did you know that we all get about 45-60 units of radiation to our breast/armpit over the course of radiation?  This dose is divided into fractions, or about 2-4 units, which are called Grays (Gy), per visit.  If you were to get 1 Gy of whole body radiation, you will develop radiation sickness (you can Google this).  If you were to get 4 Gy of whole body radiation, you would likely die.  And yet, we get brushed off for feeling like crap after getting 45 or more Gy of radiation because, well, it's only focussed on a small area & it's usually done in a very precise focussed way & it's given in small fractions that we can recover from eventually & it doesn't kill us, so, hey, can't be that bad, huh???

Ladies, we have to take care of ourselves OURSELVES, if you know what I'm saying!!

kk69Z

I had 33 with the last 6 boosts. I didn't ever feel tired. I had the same energy in the beginning as in the end. I would do them over my lunch hour, go home get lunch and went right back to work.

jrgolomb

kak---you have very valid points.  I am a month out from rads on the 13th of August and for the most part I feel better, yet there are times when all of a sudden I have had enough and i just want to go and take a nap.  i was exercising and felt good until about 40 minutes into it and I just felt a wave of tired go over me and I slowed down. 

Cheryl60

I am now 8 months out of rads...finished up 12-15-08.  Haven't really gone back to 'myself' after dx, but was feeling better and better every day UNTIL about 2 weeks ago and now i feel like i am right back in the middle of rads...really tired all the time and the breast is red, swollen and HOT again...What's up with that?  Probably from the extreme heat we had here in Seattle a couple of weeks ago...so this tells us just how bad our bodies have been hurt with this therapy.  I'm hoping that soon it will all just go away and stop being the gift that keeps on giving!

Gentle Bear Hugs to All! Cheryl

KAK

Cheryl, darling, it ain't the local weather in Seattle.  It's the local poison in your tissue. 

Pat634

Chemo (which I had first) was a breeze compared to surgery and radiation. I am now 4 days out from rads and I feel like I have been dragged behind a car. Not really tired, just zapped of all energy and no strength (cant open bottle caps, etc). Also one burned area under the armpit where the new skin is slowly coming back and weeping.  Was given silver sulfa something cream for the burn and if its working its doing so awfully slowly.

MBCR

I am about 1 month after rads & i am still very tired. I sleep 9-10 hours a night & don't always feel rested when I wake up. I go to the gym 3-4 days a week to help bring my energy level up. I hate waking up w/ a tired feeling. It takes me so much longer to get motivated each day.

O3132W

KAK:  Your post is confusing to me.  I had my first radiation treatment today and I asked how much rad did I get.  The tech told me that I had been given 267 Centegray.  I wrote this down and plan to keep a record of such.  How does this compare to the 45-60 units you wrote about?  You can see my confusion.  How many Centegray equal one unit?  Thanks  Cathey

pos-energy

I too had 33 rads, when that was done I started the tamoxifen.  It's been 1 1/2 years and I'm still tired constantly.  I would love to hear if there are similar stories because I'm beginning to think I'm losing my mind.  I'm also on effexor 37.5 1x day.  Also having endometrial issues now since being on tamox and dr's insist this is my only option...

bcmw

I'm Stage 1, Grade 3, ER +, Oncotype 22 - had lumpectomy in January, 2009, sailed thru 33 rads with no probs, finished in April and started immediately on Tamoxifen.  Hit a brick wall in mid May.  Had low hematocrit, low iron and fatigue that has lasted to now.  Have gotten my 6 month check up from general surgeon and given a green light, saw med onc and no one can tell me why the fatigue.  I think it is post radiation poisoning.  Any ideas from any one out there as to what is going on or how long it will last?  Have gotten my crit and iron back to low normal...they are doing some hormonal values - even tho I'm amenorrheic, they believe I'm not completely menopausal and want me to stay on Tamoxifen.  This fatigue stuff is horrible.....HELP.... 

Debonthelake

I had 33 rad treatments.  I had chemo prior to rads.  Early during rads I often took 3 hour naps and also slept 8-10 hours through the night.  I worked hard at getting regular exercise and eating well.  Each week of rads I felt a little better.  After a month of rads I was informed I was no longer anemic.  It turns out a lot of my fatigue was a post chemo reaction.  I've been done with rads for a month now.  I feel pretty good.  Really long 10 hour work days get to me a bit more than they did prior to breast cancer but other than that I feel really well.

shemei

My surgery was on May 18th (DCIS non-invasive and one 3mm invasive tumor). I had a partial mastectomy and eleven lymph nodes removed. All negative.

I have the summer off since I'm a teacher, so I think that has helped. 

I just completed six weeks of radiation (the last seven days were the boost). I don't think I ever fully got my energy back after the surgery, but I haven't really felt the overwhelming fatigue that the doctors warned me about. Maybe I'm just fighting through it. I just have undercurrents of tiredness all the time. I find that if I keep busy, I am usually okay. But I have been taking naps every day trying to limit myself to 30 minutes. I hadn't worked out since the surgery, but I started light (3x wk) workouts during the last three weeks of radiation. I think it helped.

I still feel sluggish... not really tired. Just like I don't have any energy or "umph."

I'm hoping it will get better. I'm worried that it will hit me when I go back to work in a couple of weeks. For all of you who have to keep working while undergoing radiation and/or chemo, I give you a lot of credit.

KAK

O3...  a centegray is probably a unit of a Gray, like a 10th of a gray, which makes sense.  I had a total of about 45 Grays, so 45 divided by the 16 treatments is 2.81 Grays.  And 2.81 multiplied by 100  is 281 Centegrays, which is about what you got in one treatment, so one Centegray must equal .01 Gray.  Hope this makes sense!

I did a lot of research about cancer related fatigue, which I included in a recent blog post, for those of you who are interested:   www.accidentalamazon.com

O3132W

KAK:  You are exactly right, I asked the rad techs.  I will be getting 2.67 units per each of 16 treatments and no boosters.  Total grays will be 42.72.   Finished 4th on Friday with 12 to go. On Tuesday it will take a little longer for my treatment as they do two xrays before the treatment.  It is hard on my back and it is hard to hold my arms above my head.  So I load up on tylenol 3 and celebrex .  When I finish my radiation my med. onc will talk to me about taking tamoxifen.

Are you having any side effects from the tamoxifen?    Thanks  Cathey

kawee

Well, finished 1 week of rads.  Fatigue has begun.  Feel weak and sleepy.  I have Lupus and Sjorgrens and fatigue is my middle name.  This is alittle different in that with the autoimmune disease I feel sick tired (if that makes sense), now I just feel sleepy and weak, no energy. 

 Some of you say the fatigue abates alittle, i sure hope it does, if it keeps getting worse my husband's going to have to drag me around.

 God Bless you all.  It's scary isn't it.  We will get thru it, I think it's the fear of the unknown that's the worse.  This was what I dreaded the most, the radiation.  The whole time the machine is buzzing, I just close my eyes and picture God standing over me with his hand out sending a healing light into my breast.  It provides some comfort.

KAK

Cathey, I can't tell what's to blame for what anymore.  Although, the typical tamox SE's, hot flashes & what-not, are very mild and/or manageable.  What is way worse by far is the cancer-related fatigue that I am still having one year out now.  I've revised a fatigue assesment tool that people can download to take to their docs.  I'm bringing this with me when I see my surgeon for my checkup this week.

Cancer Related Fatigue Assessment Tools

kane744

Thank  you, Kathi!!!  I completed my cancer treatment in Apr. (lumpectomy, chemo, rads) and have been pretty hard on myself that I wasn't a "good" cancer patient (positive, smiling, pretending not to be ill) .  I was sick, tired, and pretty bitchy at times.  Still feel the fatigue, have had to force myself to get back into my "old" life where I exercised daily, volunteered, etc.  When I tell family and close friends that I'm definitely not the way I was before bc, I get lots of well-meaning feedback and not all of it positive.  I'm in my mid-60s and until bc always felt pretty healthy and full of energy, enjoying tremendously my retirement years and freedom from the stresses of work.  As the months go by I keep waiting for that person to show up and when she continues to elude me, I began to think that the way I was feeling was the result of a negative attitude.  Your comments have given me a real boost.  It may not be me after all and I'm definitely going to lighten up on myself a whole lot!  Thanks again.  

kawee

Pat634 - How are you doing now with your rad?  I started the 17th am feeling much like you did after 4 days.  Just weak, no energy.  You had burning after 4 days?  Wow!

KAK

Cancer related fatigue is a real thing, and IT'S NOT US!!  After the slash/burn/poison protocol, I don't know how anyone expects us to feel normal.