ProtonPals

Fatigue is one of the most common side effects of proton radiation therapy. Although some patients have few side effects from radiation and continue their usual activities throughout treatment, many notice tiredness beginning a few weeks after the start of treatment. This fatigue diminishes gradually after treatment ends. The reasons for treatment-related fatigue are complex. It is due in part to the treatment itself: The body expends a lot of energy to heal itself following radiation therapy treatments, which destroy cancer cells and some normal cells, as well. Fatigue also can be due to the cancer, the emotional stress of coping with cancer and changes in routine that cancer causes, such as daily appointments for treatment.

Please send us your input. Send your reply to Ban Capron bancapron@hotmail.com or if you receive this by e-mail simply click reply to Joe Landry. We are looking for comments on how you function either during treatment or well after. You can provide “your first name, e-mail address (optional) and completion date” or say “anonymous and completion date”. Also indicate if you had proton radiation only (P) or proton and hormonal therapy (PH). Always put your completion date. Please be brief.

Most days during treatment I used the fitness center in the hotel. I could detect no change in my ability on the treadmill from my first treatment to the last. However I did find that I wanted to go to bed earlier than normal. However some Pals I’ve talked to have experienced severe fatigue. One Pal was washing his car and couldn’t finish the job. Another was gardening and after some hard work literally could not raise his hands. Ban C. (P) bancapron@hotmail.com completion date February 2008

During my treatment I noticed hardly any change in energy level. I exercised 2-3 times a week and continued to work 5 days a week as a consultant engineer. My routine did not change from my usual 9:30 PM bedtime to the 5:00 AM alarm. My 3 month checkup resulted in a 3.3 PSA, down from a high of 7.1, and everything else is normal. Al O. (P) completion 2007

During the first half of the treatment period, I walked 3.5 miles daily which was my pretreatment daily routine. During the later half of the treatment period the daily walks became more irregular because of weather, sinus congestion/head colds, and decrease in motivation. At the end of the treatments, I recognized a low level tiredness. Following the end of treatments my energy level seemed to bounce back in two to three weeks. Immediately following treatment completion, I resumed my golfing without any noticeable tiredness. (Golfing had been suspended because of the mid day treatment schedule.) During treatments I continued to do gardening and lawn care at home. On a scale of 1 to 10, with 10 being “Tiredness is absolutely no problem” to 1 where “Tiredness is a major problem which negatively effected my normal activities”, I estimate my decrease in energy level during the treatment period to be about an 8. John S. (P) completion December 2007

I did not suffer from fatigue and was able to ride bikes and walk almost daily while in Houston. Recently we went on a 110 mile bike ride on the Michelson Trail in South Dakota and are anxious for Spring to get here so we can begin getting in shape for another ride this summer on the Couer d Alene bike trail in Idaho. I am now building houses for Habitat for Humanity one day a week and working as a Volunteer Income Tax Assistant for low income people and seniors two days a week through the tax season. Ken C. (PH) completion April 2007

I experienced some fatigue during my proton therapy treatment that best can be described by the fact that I was happy the Center had an elevator toward the end of treatment. I think in retrospect it was to be expected considering my testosterone went from 473 to 84 in a 3 months time span. The old saying about “Listen to your body” proved very helpful to me in that when I got tired at night I simply went to bed, sometimes as early as 6:30 pm but found I could get up early and was completely refreshed in the morning. Luke M (PH) completion July 2007

The further into my treatment the more fatigue I experienced. I am someone who works out at a fitness center three times a week and tries to walk two miles a day five times a week. I found that my loss of energy made it a struggle to exercise on a regular basis at about the five-six week interval. I found that it took me several weeks to regain my full physical strength after completing my treatment. I do feel that the change in our daily routine while in treatment and being away from home was stressful. So the fatigue was not only physical but also mental. It would have been wonderful if MD Anderson offered access to a fitness center. This would allow us to work out with people who were also being treated. It would also serve as a social activity and allow us the opportunity to build closer friendships. Tommy T. (PH) completion January 2007

I have experienced fatigue in the afternoons from early on, and I am only finishing my third week of the program. The fatigue is far from debilitating, but it is certainly there and often calls for a nap in the latter part of the afternoon. I suspect the hormone therapy shots (of which I have now had two) contribute to the problem. David B. (PH) completion April 2008

I really don’t think I noticed any significant change in energy level. I continued a daily walking routine, and worked out on machines every other day during treatment. Maybe I didn’t sleep as well as I would have liked. My frustrated attempts as a newbie at golf I attribute to lack of ability not lack of energy. Because I had two hormone shots I did give my joints a rest for a while but this week I plan to get back on the racquetball court and in a couple weeks will be skiing Vail, weather permitting. Clif (PH) ectraver@aol.com completion July 2007

I am 65 yrs old. I started to notice low level fatigue about 2-3 weeks into treatment. Generally, I would notice low level fatigue starting Thursdays, and feel most fatigued on Saturdays…….by Sunday evenings, I would feel a little better. My weekly routine (before and during treatment) was to lap-swim about one mile Mon/Wed/Fri (and walk or ride a bike Tues/Thurs……& play 9 holes of golf on Sundays). Once I started my swims, I was always able to finish reasonably strong. My treatments took place around lunch time each day, and I continued to work 5 days a week during treatment, but would find myself ‘running out of gas’ about 4:30P each day……and on Fridays, I would only work in the mornings before my treatment time. About one week after I completed treatment, I woke up one morning and said to myself…….I feel ‘great’……..better than I had in a long time. My conclusion is that emotional stress did play a part in what I perceived as ‘fatigue’. I go back to MD Anderson the first week in April…….hoping for good results. Rick rick.kurthy@gdseng.com completion January 2008

I started Proton therapy 5 months into 6 months of hormone therapy (my last Lupron shot expired half-way through Proton therapy). I felt many of the side-affect symptoms of the Lupron as outlined in the info sheet given during orientation. However, it was all minor. Energy was slightly affected as Proton therapy moved along. Another patient and I played golf once per week, and I also hit practice balls about once each weekend. My wife and I worked out at a neighborhood YMCA about twice per week. Energy level returned about 4-6 weeks after treatment. Charles (PH) completion November 2007.

Throughout my radiation treatment, I maintained about the same energy level as before. I tested this each day at the Proton Center by climbing the stairs two at a time. By completion in March 08, I was still climbing with the same gusto. My weekends at home give me lots of high energy tasks, like moving and delivering furniture, related to our resale and farming businesses. At 72, I’m still relatively fit with plenty of work related exercise. I had expected some reduced physical capacity but did not experience it. However, as editor of a newsletter, I did notice a slight reduction in the ability to concentrate and the desire to write during the radiation therapy period. This may reflect increased mental stress in the Houston environment compared to my rather tranquil rural home life. Now, at two weeks after completion of the radiation therapy, I feel no impediment to either the physical or the mental side of my general energy levels, although there are still some slight lingering side effects of the Lupron hormone therapy. Don (PH) dfoxy1@att.net completion March 2008

I completed my 29th treatment on Friday. I’m 53 and my scheduled appointment allows me to work almost a full day everyday. So far, I’ve had a bit of prostate enlargement requiring Flomax to treat and maybe a bit of rectal injury (whether from the balloon or the protons is not clear). I may also have a bit of drop in energy level which shows up when I ride my bicycle on the weekends, but, otherwise, energy levels remain good. I’ve definitely enjoyed the camaraderie of the guys who have been treated around my time. Richard B. (P) richard.beck@ripabe.net completion date September 2008

Now, fifteen months after treatment, I am still having significant fatigue in my legs. Tom R. (PH) dtrogers@bellsouth.net Completion date April 2007