Unable to find cause of symptoms from prostate treatment or TBE

Posted by bryanta @bryanta, Nov 5 3:00pm

For 8 months I've had fatigue, unable to regulate body temp,(always cold)
headaches, balance issues and depression.
Taken off 2 year treatment 3 months early because of extreme fatigue
unable to function and bed ridden,
25 labs and tests in last 2 months say we don't know.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Have you had a Cardiac Oncologist take a look? If not, you may want to.

REPLY

Have you had your testosterone level checked? Almost all of these symptoms are those you would have from low testosterone.

Were you on ADT? Depression is not uncommon with ADT.

If you were on Zytiga with prednisone, stopping prednisone too fast, Not taping it off over a long period of time, Can cause major fatigue issues. That should not be a problem eight months after stopping Zytiga.

REPLY
Profile picture for jeff Marchi @jeffmarc

Have you had your testosterone level checked? Almost all of these symptoms are those you would have from low testosterone.

Were you on ADT? Depression is not uncommon with ADT.

If you were on Zytiga with prednisone, stopping prednisone too fast, Not taping it off over a long period of time, Can cause major fatigue issues. That should not be a problem eight months after stopping Zytiga.

Jump to this post

@jeffmarc Thank you for you insights.
I was on Lupron, deproprovera, zytiga and prednisone till early September.
Testosterone total < 3 test..free< 0.2 in September.
Ive read Lupron can stay in one's system for as long a you've been taking the injections.

REPLY
In reply to @bryanta "@mjp0512" + (show)

@bryanta I did just have an EKG and a ECHO which were negative. Thanks

REPLY
Profile picture for bryanta @bryanta

@jeffmarc Thank you for you insights.
I was on Lupron, deproprovera, zytiga and prednisone till early September.
Testosterone total < 3 test..free< 0.2 in September.
Ive read Lupron can stay in one's system for as long a you've been taking the injections.

Jump to this post

@bryanta
I was on Lupron for six years. And then Orgovyx for one more. I stopped taking Orgovyx And in eight months, my testosterone rose so fast I had to go back on Orgovyx. I was 77 at the time that is a factor in how slow it’s supposed to comes back. It seems it just depends on the person.

If that rule about As long as you’ve been taking, it was true my Testosterone would’ve never risen so quickly. In fact, my oncologist, and I both figured it would not come back at all.

REPLY
Profile picture for bryanta @bryanta

@bryanta I did just have an EKG and a ECHO which were negative. Thanks

Jump to this post

@bryanta ADT varies SOO much from person to person. Being on it as long as you have been can certainly cause all of your symptoms.
I think you’ll have to wait for your T to rise - if it even can - before your symptoms begin to subside. Just my opinion…Best,
Phil

REPLY

Have your doctors investigated hypothyroid? It can produce or contribute to the symptoms you describe.

REPLY

Your message suggests that you are "post-RP" and have been for a while. What was your last PSA level, and was it an increase over the last one(s)? Any lower back pain? I ask that because if your lymph nodes were not removed during your RP, and you had "surgical margins" (cancerous prostate tissue left in your body), and again...if you have had no PSA level in a while (6 months or a year?), spread of this cancer to the lymph nodes often shows up as "lower back pain" and "fatigue." The father-in-law of my sister's best friend started to complain of fatigue and lower back pain in his late '60's. He wrote it off as "I'm getting old." He was finally diagnosed with prostate cancer. This was in the mid-1970's before there was a PSA test. He was dead within the year or so, so I assume he was a Gleason 9 + with a PSA over 50-100, etc. I often wonder how long he would have lived, had the doctors left him alone to live out his years with this slow growing cancer. Problem was, he had clearly had his cancer a long time before diagnosis. His "autopsy" report revealed that his prostate cancer had spread to his lymph nodes (the lower back pain).
We are fortunate to be living now with vastly improved screening, diagnostics, therapeutics, surgical techniques, and outcomes, but...the cancer can still reoccur in post-RP patients despite radiation therapy and drug treatment. Good luck to you...I wish you a positive outcome.

REPLY
Profile picture for mjp0512 @mjp0512

Have you had a Cardiac Oncologist take a look? If not, you may want to.

Jump to this post

@mjp0512 ekg and echo negative thanks

REPLY
Please sign in or register to post a reply.