Radiation and Ankylosing Spondylitis

It has been a while since I signed in, although I visit daily. Having completed SRT concurrent to one 6-month shot of Eligard, I am still showing <0.1 PSA. However, T is still at castrate level 2 months after the 6 month shot, so the PSA reading only tells part of the story - mostly that the cancer is at least controlled by the HT. Will have to wait until the T is restored to see if the SRT was effective. Good enough, I'll take it.

However, at the last meeting with the radiation oncologist, I mentioned that I have had longstanding symptoms of ankylosing spondylitis, (AS) a type of arthritis. This got his sudden attention.

I explained that my primary care physician didn't care to perform a formal diagnosis because there was no cure and I was already doing what I could to manage the disease. As a result, nothing on my record.

The RO remarked that he would have approached my radiation treatments differently, and left it at that. The horse was out of the barn by now.

I went home and did the Internet search and discovered that back in the '40s and '50s they treated some AS sufferers with RT to lessen pain. It worked, but eventually it was discovered that an increase in Leukemia 5 to 10 years out occurred in a disproportionately large number of those who had RT.

AS is a relatively rare disease, so it doesn't show up on pretreatment health questionnaires. Maybe it should.

Now here I am, if it isn't one thing it's another...

Post Edited (White Bird) : 1/1/2017 1:52:14 PM (GMT-7)

Yes, the form of arthritis apparently is rare enough that there are no other sufferers here. Surprising as there seems to be plenty enough on the various AS forums.

I thought to post my situation here just in case there were some here as a warnIng before embarking on a course of radiation therapy.

Post Edited (White Bird) : 1/1/2017 1:53:12 PM (GMT-7)

Heard from the Doc's office - He wants me to have another complete blood count test, mid-January, then decide what to do after that.

In the meantime I have decided to quit taking my daily max OTC dosage of ibuprophen (tamps down the pain of the ankylosing spondylitis) just in case that may be causing any stomach bleeding. I don't think bleeding is happening, I see no evidence or symptoms, but will do it and endure the pain for 2 weeks. Heckuva new year's resolution...

Post Edited (White Bird) : 1/1/2017 1:55:06 PM (GMT-7)

fulltlt said...
Is AS passed on in DNA?

Generally yes, but... People with the HLA B27 gene are particularly susceptible to AS, but it can occur with or without the gene. My rheumatologist ordered the test and discovered that I had the gene. The presence of the gene was just confirmation of the symptoms I was presenting. There is no specific test for AS.

Though never diagnosed, my dad had a lot of the symptoms that I have.

AS is much like PCa in that everyone presents differently. In my case I didn't know I had it for the longest time, only discovering the symptoms with the advent of the Internet. Before that, I only had a "bad back" and was considered a slacker by my high school gym teachers and football coaches. Nonetheless, I accomplished four years in the Navy and did most things that I wanted to in life. Since then I have slowly gotten more creaky, but naturally older too, and as mentioned in my first post in this topic, even my primary care doctor wasn't too keen on bothering with a formal diagnosis. I don't know that I have struggled in the past, but am coming to know that I will struggle in the future. I wouldn't have even bothered mentioning it here except that many of us have to deal with radiation and there could be catastrophic consequences if AS is involved.
A web search on Ankylosing Spondylitis will yield more than most will ever want to know.

Post Edited (White Bird) : 1/2/2017 1:50:42 PM (GMT-7)