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How long does Fatigue last after 38 lovely Sessions of IGRT/IMRT?

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Posted 4/29/2013 3:36 AM (GMT 0)
Thankfully, I will finish my 38th session of IMRT on Wednesday. Everything for the most part has gone well. Yes, I had loose stools for a month or so, yes the frequency to urinate has increased and on occasion, it has been painful to start the flow. But I knew all that going into radiation.

What i kind of understood was there would be fatigue. What i didn't know was how much fatigue at the end I would experience. I'm sure that three more sessions won't make too much difference in how I am feeling.

The question I have for you that have graduated from IGRT/IMRT is how long does the fatigue last? I know exercise helps and I start tomorrow afternoon at the cancer center with a Exercise guru/PT that will get me going.

I am sure the damage done by the radiation will take months or a couple of years to have the cells totally destroyed and passed through my system.

Thanks for your experience and insight.
Posted 4/29/2013 5:04 AM (GMT 0)
Not long. I took a couple of days off work to relax after the treatments were finished. It was maybe a week or two and then the worst of it went away. By a month after I finish I was back to my full schedule of activities.

The bowel symptoms took a little longer. I still get a bit of urgency and my hemorrhoids flare up more often now but that's the worst of it.

I found that just simple walking helped a lot.

You'll be fine and before you know this will all just be a bad memory.

All the best,
Andrew
Posted 4/29/2013 6:03 AM (GMT 0)
Ten months later, my husband still has extreme fatigue. Since it seems so rare in others, I can only assume that Lupron, Casodex, and Zytiga are keeping him at that low energy level. Perhaps the radiation 6 weeks after finishing his last round of chemo didn't help either.

Best of wishes as your IMRT journey ends!
Posted 4/29/2013 6:28 AM (GMT 0)
interesting that you ask.  I finished IGRT in august 2010 but immediately after I also received my third and last 90-day shot of Lupron.  and previous to IGRT I had seeds implanted.

I started feeling better in 2011 as my libido returned and I dropped a little more than 30 lbs of eunuch blubber.  but I still had issues with fatigue, strength and stamina.  in the latter part of 2012 I felt better and I figured that was about as good as it will get and I was fine with that.

but for the last few months I feel even better.  fatigue is gone (no more naps), I don't have as many aches and pains and I can workout longer and put on more muscle.

ed

 

Posted 4/29/2013 1:34 PM (GMT 0)
It's another questions with no "normal" answer. I have been through major radiation twice, and each time, major fatigue was a big issue.

For some men, the worse effects of the fatigue diminish in the first few weeks. For others, it can linger for many months. In a few cases, it can become permanent.

After my first radiation bout, and I was much younger, in my 40's, I felt fine two weeks later, thought I had it beat, then at about 3 months out, the fatigue came back to me as a steel wall at my face. My RO at the time said that was not so uncommon, that the full effects of the radiation working inside me caught up to my body. It got bad enough, that while I was still able to work full time, I needed to go to oncology rehab for 6 months to build back my strength.

Just a hard thing to predict, I can only hope you will be one of those guys that its gone in a few weeks and you get to move on with your life as if nothing happens.

david
Posted 4/29/2013 3:44 PM (GMT 0)
It's a little hard for me to sort out the fatigue from the radiation and the fatigue from the ADT. But since you are doing both your experience may be the same as mine. I found that the worst of the fatigue lasted about two months after the radiation. For the last half of my IMRT treatments and for two months after my after-work nap was a necessary part of my day and I would generally fall asleep if I tried to watch TV and my wife would have to tell me who the bad guy turned out to be*.

Now I am less sleepy all the time and have somewhat better energy at the gym. Still not where I was before all this started but better. I think most of the fatigue from the radiation (which I finished in mid-December) is over.

*I usually knew before I fell asleep. Most who-dun-it TV shows don't have enough characters to make a good mystery. There's always the obvious suspect who acts too guilty to be guilty -- he or she can be ruled out -- plus a few characters who have too little screen time to make a satisfactory villain plus one character who gets lots of screen time but doesn't seem like a likely suspect -- that, almost always is the guilty party.
Posted 4/29/2013 7:35 PM (GMT 0)
No such thing as normal.

I didn't experience any fatigue from my radiation therapy. I had to take it on faith that the machine was even working. I was able to put in a full days work everyday and helped a daughter move a month after. My wife, however, did say I was grumpier. That, apparently, cleared up fairly quickly.
Posted 4/29/2013 8:01 PM (GMT 0)
Coming up on two years for me. Has not improved.
Posted 4/29/2013 9:29 PM (GMT 0)
What a vast spectrum of experiences post HT and IMRT with regaining energy and vitality. Sounds like if I am lucky (are any of us if we are here talking about PCa?) when the HT wears off in July, hopefully the energy will come back. I geuss it also depend if they recommend replacing Testosterone beginning in July or we play is safe and not replace it all since I a high risk PCa patient.

I am hoping that the exercise routine I am embarking on will spark a little more energy and like F8 lose a bunch of weight that would help as well.

Thank you all for sharing your personal experiences.

Posted 4/29/2013 11:48 PM (GMT 0)
Adding to my earlier comments, my original RO said after the neck/throat radiation in year 2000, that I would be lucky to regain 75% of my former energy long term. That radiation event was in the "old" days, before IMRT type beams. He was pretty accurate. I was never fully the same after then.

Then after my disastrous SRT event in 2009, there was never any recovery on the fatigue front, it only compounded my previous situation, and nearly 4 years later, been zero improvement with the fatigue. True, my chronic pain compounds the fatigue and one thing feeds the other, not a good situation.

I still contend strongly, that many RO's down play, diminish, or fail to properly instruct their patients about the dangers, side effects, and long term issues associated with radiation treatments, both as a primary treatment source or a secondary treatment source. Radiation in general does hell on the human body, even when everything goes as planned. But once serious damage is done, there is no fixing it, you have to live with it as I have been doing.

Interestingly, my current oncologist of 2 years now, and the infamous Dr. "K" I visited, both independently said they would have never had me pull the SRT trigger when I did. That one ill fated decision I made under supposed good advice, has forever changed my physical life. Boy, you have no idea how many times my mind wanders backs, and says, what if I hadn't had done it. I had reservations based on my previous radiation experience, but again, I thought I was doing the right thing to stop or slow down the remaining PC. For all my troubles, the SRT didn't phase my PC, if anything, based on how fast it has accelerated since, seemed to have "angered" it.

Everyone likes to think what happened to me is rare, but if you really research radiation damage in general, there are lots and lots of cases of extreme damage out there to be found, and I don't mean just related to PC cancers.

I still say, if the doctor's are convinced the cancer is still in the prostate bed ( and how can they really tell), then it might be worth the risk. I am not convinced they have a clue where the remaining cancer is located in most patients, thus the low odds relatively speaking of SRT success, I see numbers ranging from 30-50% generally. They would still mean 50 to 70% of the time it still doesn't work.

David
Posted 4/30/2013 1:23 AM (GMT 0)
I'd put it in the couple of months range, though as others have pointed out it's tough to tease out what's due to ADT and what's from other stresses in my life.

Ray
Posted 4/30/2013 4:55 AM (GMT 0)
David,

What is interesting and in line with what you said, they don't know where a cancer cell or two, three, etc. could be so they do the wide beam blast of the pelvic region and zap the lymph nodes for the first 28 sessions, then they use the last ten to blast the prostate facia where the prostate was prior to RRP. As I interviewed my RO before signing on, he said he could cure me. At last weeks last patient/doc session I asked him how long I had if i didn't do any treatments and he said maybe four years but if I did intermttant HT that could buy be eight years.

4 to 8 years is not the same as I can cure this cancer for you. They tend to be gun slingers, big egos, can fix anything, but the statistics and darn statistics tell us other wise. When he gave me my remaining time frame, part of me was like you, why did i do this? Maybe it bought me a few extra years, but is the quality of life worth it? Time will tell if it was a smart move or a panic move to do HT and IGRT/IMRT. Maybe I should have passed, enjoyed ramping up my T level, feeling stronger, more energy a little fight left in me and maybe a desire for intimacy.

It is hard to tell. Early in this process bought in on Provenge, RRP, HT and IGRT/IMRT.Chemo is out of the options since there isn't compelling evidence it works on PCa and all the other treatments have such bad SEs that maybe it will be time, to sit back, relax, smell the roses and go on a few road trips to Yosemite, Glacier Nat'l, East Coast during fall colors and simply enjoy the time left. Why keep spending money on procedures that are going to make us feel cruddy, continue to spend the nest egg for the spouse and kids? I think I am pretty much done with expensive treatments and going to let nature take me where it is going to take me. But I refuse to try every little new trial study, experience their side effects.

Am I off base thinking this way? I have shown my family that i fought it with the four procedures and one extra surgery to fix the ED issue. Should I want to fight to the bitter end? Is this hormone deprivation that has taken away my drive to fight this hideous disease? Who knows. Am I the only one feeling this way?
Posted 4/30/2013 6:04 AM (GMT 0)
devasted, you bring up some good thoughts on the subject.

my oncologist is treatment-neutral in his approach, but he has said many times, that in his experience, RO's sling the most falsities of them all, even more so then surgeons. He sees surgical approaches as being very mechanical things, which they are in fact, and radiation approaches, especially in context of a salvage attempt, to be shots in the dark.

as we all know, radiation is very expensive treatments on very expensive machines, and my doctor and the infamous dr. "k" both remarked that RO's tend to p ush patients into SRT for monetary reasons, even when there's not clear evidence of recurrence, or with minimal recurrence which may never foster harm to the patients. and he said, that as soon as some men even think the cancer has come back (or in some cases fear of it coming back), they either talk themselves into SRT, or it makes it easy for the RO to do so. didn't sound real wholesome to my line of thinking, if there are doctors that really do this

I don't like the word cure in regards to any cancer, who can guarantee any patient that some stray cancer cells still aren't in the body? In the cases of PC, PNI alone makes that a real possibility, even before diagnosis. I suppose if you die of something other than the cancer, then you were cured, but still not alive obviously.

You have done what you feel is right for you, and for your family, and I applaud and respect that. Each of us has to make those choices in life with severe medical matters. I have made my own choices too since all of this began for me. In my case, since I have had the misfortune of having a long, painful journey from the start, aren't interested in sheer quantity of life, have enough severe QOL issues that already have hindered me, took me out of the work force, and struggling with extreme pain and fatigue. So there's not much incentive for me to what to go on and on trying to extend my life. In July, will be the 3 year mark for me dealing with the chronic pain, and its been quite enough for me. Every morning I wake up, it starts with pain, and ends with pain, despite meds. And no, I don't wish to be drugged to the point where I can't think straight or be functional, so even that's a trade off.

Not afraid of death or dying, we all have to go there one day, and in the mean time, I try to enjoy what I can enjoy with the limitations that are already in place in my life. It's kind of hard to live "each day to the fullest" attitude, if one is baring so much physical hurt. I'm a realist, I know what I can and can't do.

I hope you continue to find your balance in life as you continue your own journey, and hope and pray you never have to deal with some of the more negative aspects of our disease and cancer.

david
Posted 4/30/2013 6:07 AM (GMT 0)
p.s., good luck on your last two RT sessions. anyone that has gone through it, knows first hand, its an endurance contest more than anything else. in my last session, it seemed like every time my eyes were opened, I was staring up at that machine listening to it index its movements around my body. it was a long 39 days worth to me. position 6 in my routine is where I felt the burning, so I use to cringe as the machine neared that point each day. was so glad when it was over.

david
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