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Posted 2/4/2016 7:47 AM (GMT 0)
I had 33 IMRT at Royal Marsden in Sutton during May-June 2015. It did not seem too bad.

However, in late September to October 2015, I began to feel like I had been hit by a truck. I feel I aged 10 years in 2 months. Walking more difficult, bowel leakage (cough, sneeze, poop etc), long sessions on toilets, aches and pains, restricted flow of urine, hips inflamed some, etc.

Now it's Feb 2016 and I still feel like crap, shuffling around like an old man. I also had yet another urethral dilation back in Nov 2015 which made things worse - more leakage, lower flow rate than before operation :(

I am on Zolodex Goserelin until June 2016 (completes 2 yrs) and this had hit me hard as well, especially horrific insomnia.

What are your experiences? Does it ever get any better?
Posted 2/4/2016 8:31 AM (GMT 0)
So sorry to read of the effects but it looks like it may have zapped your cancer. Hope it all gets better.
Posted 2/4/2016 2:18 PM (GMT 0)
The radiation causes some damage. Took me quite a while to recover. I'm still not 100%.

Tom
Posted 2/4/2016 4:51 PM (GMT 0)
I am having plenty of effects from radiation. Many just started recently, about 5 years after my radiation.

Maybe JackH should start a new thread about the SE of radiation.

Mel
Posted 2/4/2016 5:02 PM (GMT 0)
Were all of you gentlemen's radiation done to the pelvic area's?

BOOGEE
Posted 2/4/2016 5:06 PM (GMT 0)
The shuffling around like an old man could be a result of your HT. I often made the exact same comment as you--I felt like the HT aged me 10 years. That's mostly gotten better since I'm off the sauce, although it's still not 100%--perhaps because my T is still somewhat on the low side.

Re the other side effects, I suppose they could be radiation related. It appears that you had either salvage or adjunct radiation and I understand that has a higher potential for SEs than those that had radiation as a primary treatment. One of our most knowledgable posters here had a list of SEs for IMRT that he posted, although it was for those that had radiation as a primary treatment.

For my part, I don't feel like I have any radiation SEs at this point and I'm just about three years out. (Which means it's too early to declare victory...) I hope some others weigh in with their perspective.
Posted 2/4/2016 8:00 PM (GMT 0)
Salvage radiation like you had can have many of those effects, but as Michael-T said, it can be hard to distinguish which therapy is causing which side effect. For most guys the radiation side effects are transient, but everyone is different. I hope 142 and PDA will comment.

It sounds like you had dilation for a urethral stricture. This is a very troubling SE associated with salvage IMRT sometimes. The recently cut and rejoined urethra (the anastomosis) may develop scar tissue that can close off the flow. Unfortunately, this can be going on at the same time that one has lost control over urination - the worst of both possible worlds. In some men, the scar tissue continues to grow, necessitating multiple procedures and increasing incontinence. The best solution may be a sling or artificial urinary sphincter.

The weakness (asthenia) might be relieved by a lot of vigorous exercise - both cardiovascular and weight resistance. Some have tried modafinil to help stay more alert during the day while on long term ADT - ask your doctor. Sometimes increasing wakefulness during the day can help one sleep better at night. Ask your doctor too if an NSAID (like ibuprofen) might be appropriate for you. It can help relieve that achy feeling that might be slowing you down and keeping you up at night.

- Allen
Posted 2/4/2016 11:05 PM (GMT 0)
Having had both, my guess is the HT is the culprit.

Allen -- radiation SE come on years later. Isn;t it true that those effects are often long-lasting, not transient?

See you next week

Mel
Posted 2/4/2016 11:33 PM (GMT 0)

Mel said...
Allen -- radiation SE come on years later. Isn't it true that those effects are often long-lasting, not transient?

Both statements are untrue. "Acute" SEs occur within 3 months of treatment, and can predict late term effects. "Late term" effects most often rear their ugly heads within 2 years of treatment, and rarely later. They are most often transient as well. "Chronic" side effects can start within the acute time frame or the late-term time frame and continue - fortunately they are the exception rather than the rule.

As I've often remarked, the SEs of salvage are often worse than primary radiation because they are irradiating tissue that is already damaged, and there is no prostate in place to block the radiation. This is especially true at the site of the anastomosis, so these kinds of urinary problems (e.g., incontinence with retention) are unique to the salvage situation. In susceptible individuals they often show up early and can become chronic.

See you next week!

- Allen
Posted 2/5/2016 12:01 AM (GMT 0)

Tall Allen said...

As I've often remarked, the SEs of salvage are often worse than primary radiation because they are irradiating tissue that is already damaged, and there is no prostate in place to block the radiation. This is especially true at the site of the anastomosis, so these kinds of urinary problems (e.g., incontinence with retention) are unique to the salvage situation. In susceptible individuals they often show up early and can become chronic.

- Allen

I can certainly identify with TA's remarks.

I had RT in Jan/Feb 2014 following surgery in August 2013. When RT started I was virtually continent, but by May of that year I returned to massive incontinence (5 to 6 pads per day) and a weakened flow. Following attempts at dilation, I eventually became totally retentive and ended up with a supra-pubic catheter which I will probably have for life.

All of that has been blamed on the RT. I also had radiation proctitis which caused a few bowel problems - some anal surface bleeding, very loose stools and frequent urgency. Late last year I had a colonoscopy and diathermy to the worst areas and that has virtually cured all bowel issues. I have returned to my normal very comfortable bowel movements and only very occasional and minor bleeding.

As others have mentioned, I am pretty sure the general feeling of malaise described by the OP is most likely due to the HT. I was fortunate to not suffer much during my HT year, other than occasional periods of tiredness, but that has now worn off and in general I feel terrific. Lost some of my strength, but I suspect that is due to age as much as anything.

Chas
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