RADIATION FATIGUE - POLL
Comments
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Hi gals, what we all need to know and what they do not tell you is that we have a very mild form or radiation sickness. Some women have almost none, others are hit harder. I guess age, and a dozen other things affect this.
I am 10 years post treatment and am finally seeing an improvement in my rib. This was a very odd thing, but not many have this rib pain last so long.
I found that I could work (desk job), then go for my zap at 4pm, then go right home and veg till bed time. This worked for me. The one night I went out for dinner with friends I was completely ruined the next day. I was 63 and had no children at home. So this doesn't work for women with little ones.
Gentle hugs, Shirlann
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Radiation hits everyone differently. I had surgery, no chemo, then did the shorter 3-week rads protocol (fewer but higher doses). Was fine after surgery energy-wise (had other problems with surgery!!), but by my 4th rads treatment, I pretty much crawled home that day, barely could drag myself into bed. End of that week, came down with a whopper sinus infection & had to be on anti-biotics. Five days after I finished rads, I went back to work full-time as a physical therapist.
I'm better than I was, but I really haven't been the same since. I do NOT have my normal energy back at all. Have to pace myself differently. In fact, I just did a weekend workshop about how to help BC patients as a rehab therapist and learned a lot. Cancer fatigue is a very real thing and can be a long -term problem, so we are NOT nuts. Gradually, gently getting back into exercise can help but it may work better if you go to a PT and have some guidance because most of us don't know how to pace our selves because we've never been through this before. Also, I have a lot of scar and fibrotic tissue, which continues to churn up post rads (& will occur up to 2 years after rads are done) and know now that I need to get this worked on, too. Now I know how to work on other people, but I need to get someone to work on me.
So we all need to be patient with ourselves and especially not compare ourselves with other BC-ers who may "breeze" through things. Most of us don't. Not sure I believe anyone does. And we need to keep sticking up for ourselves because even our best friends don't always get it that it can take a loooooooonng time to recover.
Luck to all.
Kathi
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After chemo (ACx4) I had 32 sessions of radiation. I did not have any fatigue.I had my treatments at 8 a.m and then went straight to work. I worked everyday and walked 3-5 miles each day. That is not to say that there were no side effects, but they didn't hit until after I had finished treatment (thickening scar tissue, pains in breast and underarm, some burned skin - but still no fatigue.)
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Sedosa I'm sorry to hear that. You've been through a LOT. It isn't any wonder you feel this way after so much trauma. I just posted in another thread, but it's worth posting again... I can't stress enough how much better I feel after two months of prodding, tests, biopsies, and 2 surgeries, just to cleanse with essiac tea and to eat lots of veggies, fruits and mushrooms! Do some research about cleansing the toxins out of your body. My tea cleanse was very gentle and I'm happy to tell you more about it if you'd like. I also joined a gym and have scheduled five sessions with a trainer (no extra cost) who will help me build my strength with good advice. Otherwise I know I'd slack off. I am a slacker and so undisciplined. I have always had a bad diet as well. (I'm reading alot and happy to share more with anyone.) Good for you that you are retiring. It's time to put you first.
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Hi
I had a lumpectomy April of 08 , followed by 33 rounds of radiation starting in June-July 08 (5 boosts at the end, no chemo). I had my appointment at 6:45 am M-F , I was the 2nd appointment of the day, I did have the 5:00 pm slot, then quickly changed the time to the morning , as I found that once they are "behind schedule" , I often waited over an hour a few times to go in. Sitting around made me more tired , I just wanted in and out of there! Yes, I had fatigue the 3rd week going in , and I would say for 6 months after I finished. I napped each day, which helped somewhat. I was on no medication.
Krissy
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wow. no kidding. for six months. Well i will keep my progress posted. I'm due for 17 rads...but they're more intense. Thanks.
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Hi - I finished up on June 9, 2008. I had a lumpetcomy, no chemo. I work full-time and have two kids (one is in college, the other high school). I took disability from work while undergoing radiation. I couldn't focus on work and I was tired after my treatment. I did walk everyday and made sure I ate citrus fruit (it is suppose to help while having rads), and took care of myself. I went back to work about a month after my last treatment, and had no problem focusing.
There are days where I wonder if I'm tired because of what my body went through, or is it just being a full-time mom, wife, and holding down a job??? Who knows?
I'm participating this Friday in Relay for Life at my daughter's college. I'll walk a lap for all of you ladies!!!!!!!!!!
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I really never had fatigue or any SE's with rads, but my rad onc said it varies so much from person to person, and she said she didn't think it was dependent on age. I must say that the hepatitis I got two weeks after my mastectomy (it was "drug-induced hepatitis," from the Keflex, an antibiotic they give intravenously for hospital staph and strep) really laid me low and I couldn't figure out why I was so tired until they diagnosed it. But rads was fine--except for the nuisance of having to drive there and wait.
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Hi - I had 30 rounds of radiation and had to stop exercising after week 3 as I had such little energy. Once I finished radiation I started on Arimidex. I have had every side affect possible; weight gain, no energy, joint aches and pains and even shingles in my eye and head. Once I hit my bottom I was willing to try anything to re-claim my life. I found a natural supplement (that my doctor and surgeon approve) that has turned my life around. My weight has stabilized, I am sleeping 6 hours compared to the 12 this time last year. My joints don't ache. I have even started to train again for triathlons.
If you have any or all of these symtoms email me and I will send you a sample. I can't tell you how much my life has turned around. I want everyone to feel as good as I do.
Wishing you a healthy life full of energy and no more side affects.
Jill in Denver
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I found that my best day was to get up in the morning and head to work while I was fresh. Than I scheduled the last possible radiation of the day. After radiation I want home had dinner and want o bed. I had just started a new job so I had to keep as focussed on work as I could.
Good luck, you will find what works for you.
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Kathy
I had great PT and I can't imagine doing that physical work without energy. Hopefully you have started to re-claim your energy. If not, and you are open to a natural alternative email me or post a message and I will gladly send you a sample of a product I can't life without. I have more energy than before my surgery and feel better than my old self.
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You go girl!!! Good for you.
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I just had treatment #19 (of 33). I'm actually less tired now than I was for the first couple of weeks. I do take naps almost every afternoon, though, about 4 hours after rads (which is when my toddler naps!) In hindsight, I think that exhaustion earlier in treatment was an unfortunate combo of my thyroid being out of whack, borderline anemia, and the fact that I was in the middle of a zinger of a cold. The thyroid and anemia treatments are starting to kick in now, and I can feel a sense of energy I haven't felt in some months. I'm also almost over the cold - finally! It may be that the radiation fatigue hasn't really hit yet - I don't know. I do need those naps, but now am feeling refreshed afterwards (which I wasn't earlier on).
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During my 3rd week I have been hit by a ton of bricks,(or that's what it feels like). Also I had to have my gallbladder removed last week & never missed a rad which I drive 2 hrs. one way to everyday.
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I had 30 tx in 2005 after a lumptectomy and no chemo. I work close to the treatment facility so would walk about a mile round trip to receive treatment. I generally kept up my usual activity level and I didn't notice fatigue until after I finished treatment - if I did anything strenuous, like a hike, I would just...run out of steam. I didn't feel short of breath or like I had sore muscles. It was like I just had to stop. And I wouldn't recover as quickly. It's hard to describe. I would say that diminished within about 6 months or so. Aside from this happening after a strenuous activity, I felt fine. I was 52 at the time.
Oddly, my skin was just fine during treatment, too (aloe vera gel is my friend) but a few days after the last treatment, THEN it started to peel. It was kind of gross for a few days, then healed up quickly. So I think it's funny that I had my only issues AFTER tx.
I'm about to go through this again shortly with my other breast, and I'm very curious to see how the experience goes this time around.
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Today will be rad #16 of 30 and so far my skin is holding up great. I was not experiencing any fatigue at all until today . The weirdest thing is I felt great this morning - lots of energy - got into work still felt great until around 10:15...then wham..like walking into a brick wall! Going to go for a walk at lunch to see if that will revive me somewhat. No sense in driving home because I am an hour from home and then will need to turn around and drive an hour back for rads.
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I started rads on 3/30. No need for chemo due to low Oncotype score. Only meds I am on are occasional Advil for sinus headaches. On Day Four, the dreaded fatigue set it. My rads appts are 2:30 pm each day and at about 6pm I am ready for bed!
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I'm doing tx #27 today. The fatigue thing was really sneaky for me. I'd come home, go visit my sister for a while and had coffee with her, then come back, and woosh, I'd be snoring in the recliner. Haven't felt like cooking in days, as my taste is off, too. Then, at bedtime, I felt I couldn't keep my eyes open, but then couldn't fall asleep. Even the tylenol PM doesn't help anymore. So I'm not sure if it is rotten nights of sleep or the radiation. . .???
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Hi Gals, well I am almost done with rads. Three more full breast and 5 boosts to go and except for one day earlier in treatment when I hit the wall for a couple of hours, no major fatigue.
Dx 10/2008, IDC, 1cm, Stage IIa, Grade 2, 2/10 nodes, ER+/PR+, HER2- -
Hi ladies -
Well, today is Zap No. 15 - have a bit of a rash and a swollen breast - still rather tired. At least today is the day rads onco checks out the skin of the affected area. After this, 18 zaps to go!
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I took Chemo in Sept 2007. I was stage 1. Hormone fed. I took 4 chemo treatments and almost decided to not take radiation at all. Then I talked to people who really have experience in this and decided to talk to a doctor that I was referred to. The radiation doctor put me through a week twice a day of radiation. I have had no problem other than this exhaustion and tiredness most of the time After Rads.
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Well maybe I shouldn't have posted the no major fatigue post a few days ago...while I wouldn't classify the fatigue as major...it certainly is "there". I am fighting my way through it, still going to work...I'm very stubborn. Anyway, only 4 more boosts left and I am done. This weekend I plan to lay pretty low and take it easy.
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I think the fatigue hit me more at the end of it all -- more so than during the rads treatments. I don't know if it was all just the emotional build up and then the let down, or if it is real fatigue or what. But this last week (I finished last Wed), I've been a couch potato. I tried yesterday to get up and vacuum, dust, etc., and I lasted about 15 minutes and that was it. I got sweaty, breathless, my chest hurt, and I just caved in. I do plan on trying to do something each day because I can't stand this laying around all day! It's worse than anything! Too much time to think about things!
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I have three more boosts to go...Apr 29 is my last boost. However, up until last Monday (April 20) I thought - wow - I am going to make it through without skin breakdown or fatigue. Well...bummer...no such luck. The fatigue hit me at the beginning of last week and just won't quit. I am actually sleeping much better and yet still feel really tired. Of course, I didn't escape the skin breakdown either..double bummer. So tired of this whole ordeal...and it is almost over...and I am going away mid May for a few days on a post treatment trip...can't wait. nelia48..I totally understand about the couch potato thing...yesterday I was going to do a bit of house cleaning and got as far as thinking about it and then totally vetoed the idea. The dust bunnies will just have to muliply a little longer. LOL
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Hi everyone -
Finished #19 last Friday - HUGE red inflammed bumps -itchy! - presented themselves. Told to rest over the weekend and put on pure aloe vera and Aquafor - which just made it worse. Woke up this morning and the bumps have multiplied, so I called my rads onco nurse early this morning and she told me to come in ASAP, which I did. The rads onco checked it out and said it was an allergic reaction to the Aquafor and aloe vera used together, and also extreme sensitivity to the rads. He gave me a week off from rads - told me to just use hydrocortisone 1% and nothing else.
So we shall see . . . anyone else have a similar reaction?
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Hi Britt...My skin breakdown did not present itself like yours did. As a matter of fact, I really thought I might squeak through without any breakdown but last Monday (rad #23) boob breakdown occured. I have three areas that are bad - my collar bone area (probably from radiation scatter), my nipple area - damn it's sore and my arm pit which is the WORST. I've tried aloe vera as well as polysporin - neither really helps. To be honest the only thing that helped this past weekend was going topless as often as possible. Although that's not something I can do at work..LOL. Anyway, I am seeing my rad oncologist today to find out if there is anything else I could possibly use. Not sure I would want to use cortisone cream because I understand (I could be totally wrong) that it actually weakens the skin area. I hope that your rad onc is able to find something that will work for you.
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I started rads 2 weeks after my last chemo. I am scheduled for 33 sessions - total 6 1/2 weeks. So far I've had 20 rad sessions. This is the beginning of week 5 and I think I'm still doing pretty good. Over the weekend I noticed I was more tired than usual and by late afternoon on Sat and Sun I was feeling somewhat under the weather. This morning it was harder to get out of bed and I've been feeling slightly queasy. I'm not having any skin problems. I apply aloe vera gel twice a day. I've only had some soreness and slight redness so far.
I've been working thru chemo and rads and still exercise 3-4 times a week. I think that's been helping me get through this.
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Day after found lump in September 08 took off the hormone patch. HAd ovaries out in 2006. Hormonal havoc began with emotional rollercoaster of Dx. No chem. Finished6 weeks rads march 27 and started armidex April 8th...and STILL tired. Some days walking is an effort, but other days much better. Try to exercise when I can..walk a mile in hilly area holding 3lb waits. I hope the good days are more frequent. The tired days I am ready to quit the arimidex.. except I don't know what the fatigue is...really the rads or the arimidex!!! before Dx I ran 3.5 miles 2/week. One day I will get back there. But I think I am being double hit on the estrogen with patch removal and arimidex.. I have gained about 6 pounds...
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I know many of you are saying that the creams, etc., are not working. Don't stop using them (except when the dr. says it's an allergic reaction, etc!). You have to remember that the burning is delayed with radiation, so today's cream is several days late for the burns you are seeing now. I kept on using the stuff, no matter what, and in the end, everything healed up very fast. Even after the last treatment, the burns got worse and worse for about 5 days, then stayed about the same for a few days, then all of a sudden started healing up. The healing process was hard, as it seemed to crack open every time I bent or leaned or stood up! Very irritating. My last was April 15th, and right now I have only a penny sized area that is still scabbed. The rest is all healed up and fading away. You'll make it through, I promise!!!!! I did!
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Nelia, the post-rads fatigue is real and well-known, although sometimes underplayed, by the docs, believe me. Talk to a few oncology nurses & they'll tell you all about it.
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