Recovery from treatments...

By BOOMERBOB46

3 min read

Having completed 28 hypo-fractionated IMRT treatments accompanied by ADT, recovery can be as much about recovering from treatment as it is recovering from the disease itself. Sharing here a day in the life from my cancer journal....

Journal Entry: Sunday, 29 August, 2021, 6:30 AM, EDT

A restless night sleep

I had a relatively restless night overnight. Like clockwork, I had to get up every two hours to empty my bladder. On the positive side, by morning the pitting edema in my lower legs, feet, and ankles had almost entirely disappeared, passed in my urine I suppose. At least the frequent trips to the bathroom had apparently paid off in that respect.

The sleep I did get was not very restful, disturbed by joint pain in my shoulder and lower back and the ache in my right knee. I think I have aggravated my lower back with the odd way I have been walking to favor the injured knee. It throws everything off.

The pain persists

Though I had noticed modest improvement in my knee yesterday morning, by evening whatever improvement there may have been earlier had vanished. This morning it seems nearly as painful when I walk on it as it was several days ago. Healing seems dreadfully slow. I dearly wish I could take NSAIDS to reduce the inflammation but my blood thinning Warfarin regimen will not allow it. If it does not significantly improve soon I will try to get in to see my family doctor and at least report it to get it in my health record. If it persists, perhaps an MRI is in order to see exactly what’s going on in there.

Tylenol doesn’t seem to touch the pain at all, and it will do nothing for inflammation. I have a little hydrocodone on hand, unused after my prostate biopsy, but I refuse to take it, because of the side effects. Topical pain-relieving gel seems to help only very little, and whatever relief it provides is only temporary. So I guess I am stuck with this until my body decides to repair itself in its own time.

Thankfully for the most part, it is only painful when I am up walking around the house. I remain active only as much as is necessary to use the toilet, care for the cats, feed myself, wash dishes, and shower. Exercise requiring use of my legs is out of the question for now. Since I injured it last Wednesday most of the time I have remained seated with my butt firmly planted in this recliner in front of the computer monitor and TV.

Difficulty showering

Showering is slow going and I find it difficult to reach my lower extremities. Yesterday by the time I had finished showering, shaving and dressing I was worn out. I couldn’t help but recall the times I had helped Rosie and Jeff shower and dress when they were stricken with cancer and too ill to do it for themselves. I remember all too well the look of exhaustion that marked their countenances.

What if I needed help then too?

And then I think, “What if Jeff was still here now? How could I begin to take care of his needs when it's difficult for me to get around the house to care for myself? What if we had all been stricken at the same time? Thank Heaven we were spared that, but now I am the one left standing to deal with life in their absence.

I know this condition is only temporary and I am certain it will pass with time, but it does accentuate the difficulties of living alone with no help mate when one is not entirely well. Six months ago I could not envision where treatment for my prostate cancer would take me physically. The light at the end of this tunnel is the hope some months from now for return of normal testosterone levels and with it, recovery of the lost vigor I have experienced with androgen deprivation therapy.

Reflecting on it all

I don’t at all regret my decision to go with radiation therapy to treat my cancer, rather than the risky (for me) radical prostatectomy surgery. Still, I wonder if neoadjuvant and adjuvant ADT was really necessary, considering all its negative side effects, not the least of which for me, was the serious though apparently temporary impact it had on my heart. Hindsight as they say is 20/20, and I don't fault my oncologist at all for it. After all, we were simply following what is considered today's best practices for my case. Ultimately if ADT was the final nail in my cancer's coffin, then side effects notwithstanding, it will have been worth it in the end.

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Guy Meredith Moderator & Contributor
 <inline-mention username="BOOMERBOB46" user-id="4169644"/> I had the same treatment, but not the same effects you describe. I had the menopausal symptoms of hot flashes, emotions, fatigue and all, but do not remember frequent night trips to the commode, edema, and all. How many of these were related to pre existing conditions? Guy B. Meredith, moderator.
BOOMERBOB46 Member
 Guy, My cardiac symptoms (heart palpitations) were apparently caused by ADT. In clinical trials the makers of Firmagon reported negative cardiovascular side effects were “infrequent” being reported in only 6% of participants. However among those who were so affected, symptoms were generally severe. My heart palpitations began a couple weeks after the initial injection in early January and became worse with each monthly injection, peaking 2-3 weeks after injection. It became so bad I was often afraid to close my eyes at night and sleep for fear my heart might go into fatal arrhythmia while I slept. For that reason I discontinued Firmagon after only four monthly injections. My oncologist was okay with that, saying protocol for my case calls for four to six months ADT with IMRT. I’d had four months, and considering the CV effects I had been experiencing, that was enough for me! My heart’s ejection fraction also was affected by the treatment. It was measured on echo-cardiogram to be about 40%. Thirty-five percent is pacemaker territory. A complete heart workup found absolutely nothing wrong with the heart muscle itself, no infarcts, no cardiovascular disease and no valve defects. In an effort to subdue the palpitations apparently brought about ADT treatments my cardiologist prescribed Carvedilol, a beta and alpha blocker. After starting on the Carvedilol the edema in my legs became much worse than it ever had been before. The root cause of my cardiac issues seems to have been the ADT. Treatment for those effects brought its own set of side effects. Since ceasing Firmagon treatments my palpitations continue but at a reduced frequency and my cardiac output has increased to the low end of normal at 56%. My joint pain continues, mostly involving tenderness in the tendons and ligaments around the joints, rather than bone on bone issues. Things have been slowly improving of late for me, although I have a long way to go to get back to where I was in terms of general health and the vigor I had before treatments began in January. My latest testosterone level taken last week measured 73, so it is beginning to come back. Therein, I believe lies the key to my recovery from these symptoms. For me, the problems I have had may not have been specific to Firmagon. It may have had more to do with zero testosterone. Testosterone’s role in heart health and in control of inflammatory processes is well known. I might have experienced the same or similar issues with any other form of ADT. It’s difficult to say with certainty. I just fervently hope I never have to go back on ADT in any form, because for me at least, the side effects went well beyond hot flashes, mood swings and fatigue.