Over the past couple months I have had 3 episodes of extreme pain that last 2-3 days and they magically go away as fast as the came. The pain is most always in areas where I have bone mets, so I don't know if it is directly because of the mets, or maybe caused by Lupron and/or Zytiga.
This past Tuesday I woke at around 2:00am with another round of extreme pain and figured here we go again, get ready to ride it out for the next few days. Well that didn't happen this time, the pain continued to get worse in my hip and shoulder. It was so bad that I ended up in the emergency room Saturday night trying to get some relief with the pain. After 4 hours and getting x-rays too, the conclusion was arthritis, lol. The pain felt like someone was trying cut my leg off with a huge knife, excruciating is the only word I can use. I also could not raise my arm above my should, same excruciating pain. So they gave me Hydrocodone and told me it would help withthe pain, it did nothing. I spent the next two days using a walker to get around the house. It was unbearable pain. Just tonight it is starting to lighten up.
I think it is the destruction of muscle and tendon mass caused by ADT. My oncology team does not agree. I'm at my whitt's end and am looking for others who may have had this kind of intense pain. I've been on ADT for just over two years and never even came close to having this much pain.
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bglendi53
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Have you had a PET scan lately? It could be disease progression. Don’t just rely on PSA numbers. I’ve also read where Xgeva and similar bone hardeners can temporarily cause extreme bone pain.
I agree, a lot of this feels like muscle pain. Funny thin is that I have chronic mid back, but when I have these episodes, the mid back disappears. Then comes right back when the severe pain subsides.
good morning sir and thank you for sharing. I believe I have your issues to look forward to. I have only been on Lupron for 90 days and Xtandi air for a little over a month. working on my farm are usually lift 3 to 5 gallons of water and I’m OK, since then it feels like spinal stenosis and a knife in the upper middle of my back when I’m lifting that. And it radiates out to the front of my chest. I ambulance ride to the hospital thinking cardiac issues. The urgent care sent me there. ER said the heart looked fine you must have GI issues. My uncle chiropractor look me over, said everything is out of place, all my ribs were twisted and not holding placement. I had to lower my watering down to 1 gallon at a time to ease any type of strenuous bullshit on my back. Sucks. Sucks. Sucks.
Sorry to hear your not getting the pain meds you need,my hip and shoulders ,ribbs lower back leggs ,tumor right hip and neck ADT treaments wor hold it at bay and striods and morphine 60mg er,15 mg ir2x to 3xs daily, stiariod helped when nothing else would .
I am totally speculative especially since I am not you and cant feel what you feel.
You could discuss with your Dr. something my MO told me about a year ago.
It is surmised some of my pain and limited range of motion is from damage to tissue and in the case of my right shoulder/scapula ligament damage. Caused by bone mets that infringe on the nearby tissue, ligaments.
My pain isn't constant either but not near as bad as yours nor does it last as long.
My problems is that I have had a lot of chronic pain in those areas for years, but I can't get my MO to help determine if it is cancer pain or maybe even a combination of both.
I don't even have an MD, just a PA. This is way too complicated than just regular pain. Im looking for an orthopedic or rheumatologist, but I must admit I don't have a lot of faith.
About 9 months ago - well before I knew I had PCa, I was getting extreme pain in my right pelvic/buttock area that continued down my right leg to the extent that I was on crutches at one point. I assumed it was sciatic pain and went to an osteopath. After about 4 painful sessions, the pain in my leg was gone and down to just a dull ache in my buttock.
On Dx for PCa, my MRI/CT scans showed a fairly large tumour on my right pelvic bone and the CO asked if I had any pain from it. At first, I thought not but then realised that the extreme pain I had before was due to the bone met and not sciatic after all!
I started ADT and while I can still feel the dull ache of the met, I have never had the level of pain I had 9 months ago so perhaps an osteopath could help you too?
When i found i had a very high psa 370 now down to .1 and bone mets in neck and other parts of bones spine and hip areas.What originally felt like normal neck problems, arm pain and "sciatica" down the leg turned out to be pressure on my spinal cord.One radiation zap at the neckand no more pain .Sleeping really well ,the best for years
i am in the eastern suburbs in Sydney and go to the KingHorn Cancer Centre in Darlinghurst.I wiil start in maybe 2 weeks the generic Zytiga.I have been on hormone therapy since the start.Finished Docataxal (chemo) about 4 weeks ago.Regards Brian
i am also professor Anthony Joshua patient and I just had my 68GA PSMA PET/CT and looks like that all my bone mets gone. Now I have only PSMA positive cancer with SUV MAX14 in my prostate and in my left vesicles.
i am going to have a consult with genesis care with the radiation oncologist in order to consider MRI Linac of my prostate and full pelvic floor radiation.
you are 4 years behind me.
i was diagnosed with more than 15 bone mets in April 2018. Started Degarelix injections and 2 months later I had early docytaxel chemotherapy.
since thn I continued with the Firmagon injections. My last PSA was 1.26
i believe that the safest way of taking the Zytiga is in the morning full dose as soon as you awake on empty stomach. That is the way how the drug was tested and FDA approved. Of course if we run out of money, maybe later we can experiment with taking it with milk (low fat meal).
i would not experiment with the dosing at least for the first 6 months.
did I tell you about Health Unlocked social site? Yes you said that you believe that Firmagon is now very common.
yes, if you have a metastasis in your neck just as I also do have or had it just under my skull. That is why wanted to have a PSMA PET scan to check it out.
i also asked you about sciatica nerve pain like me. It is interesting. How many mets did you have in your spine? I have or had 15 . That is very scary.
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Yet another fork in the road
Docetaxel complete, waiting for scans...
Completed 2 rounds of chemo 8 to go. I can do this
Another Brother Passed Away.
Recurrent? Wait and get another PSA test to confirm situation 
