I'm 53 with advanced disease, PSA was 300 in 2020, due to extensive bone Mets. Since then Orchiectomy and Zytiga has done a great job of getting my PSA down to 0.01, for several months now.
I have significant bone and nerve pain, under control with opioids Fentanyl plus Morphine, and Pregabalin.
Recently I started with once a week oral meds Risedronate 35mg. I'm trying to figure out if I need to up my dose of pain meds, or what is going on. I have new bone pains and joint pain too. All over my body, but specifically arms, shoulders, pelvis etc.
What are your experiences with these types of bone meds? Does it get worse before getting better, or what does the bisphosphonate cause?
Kind wishes to you all, looking forward to the replies.
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CSHobie
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Hey hobie ! I can relate totally . I’m 60 now but I started at 53 also .. I suffered a twisted up urology instead of bone mets . I had none . I had muscle bone nerve pain during and after imrt Lupron and Tak -700( similar to zytiga) Tubes out of kidnies prevented me to lift weight for 2 yrs . I lost all muscle bone into osteopenia . Ive taken prolia over two yrs now yet ? I had a fractured rib bone for no reason . Lots of pain in hands an feet and joints . I’m not as bad as you are however? I’m sorry that your are suffering so much Sir! Whatever it takes? I hope you get the good stuff to help you out . Somehow escaped my tubes and related pains over 5 yrs ago.. pray for you to get rid of the brutal pain ASAP . No one deserves that . Hang tuff young man. Should you be on bone meds ? You need a break from the pain . 😩✌️
Bone and joint pain can occur. Let your doctor know, especially if you are also having flu-like symptoms. Paradoxically, fractures may occur with long-term use, but that is rare.
You could discuss using zoledronic acid or denosumab (prolia or xgeva) instead of oral risendronate if you have extensive bone metastases. These meds could help to reduce skeletal events.
For sure if the cancer were castration resistant. It seems the cancer may be castration sensitive. I believe in that situation prolia may be the choice or zoledronic acid.
There are many alternative medicines in Omega's etc that have an anti-infam properties. A good Chiro or nutritionist might be of help. Sauna's, meditation, Trace minerals important, detoxing etc. Find a good alternative healthcare doc near you
First of all the ADT suppress testosterone and castration mostly eliminates testosterone AND estrogen. Estrogen is necessary for bone health. So, already we are compromised. and set up to develop osteoperosis (lack of estrogen to normalize the calcium cycle). The entire group of Bisphosphonate's target one side of the Calcium cycle in the bones namely the inhibition of the remodeling of the bone (osteoclasts) Normally our bones are constantly remodeling and thus remain young and strong. Interrupting one aspect of the cycle in addition to suppressing the entire cycle (lack of estrogen) comes with negative consequences. Listed on the label as "rare". if it happens to you it is not rare ( I know several people which have had serious side effects without the additional complication of prostate cancer treatments. Please look at this article it helps to explain what can happen
Thanks for the great reply. I have asked several of my Dr s, and none of them want to give me estrogen patches. I think it's not in the SOC, so they can't do it. I use estrogen cream from Amazon, but I don't know if it actually works.
I'm still hormone sensitive, thank you Jesus.
Thanks again everyone here on this forum, I read it every day, and have learned so much.
'lancer82801' is absolutely correct. Estradiol (E2) is aromatized from T and without T bones lose much of their density. My ALP level was way above normal until I started applying E2 gel which is my preferred ADT regimen. I think you need a doctor that will prescribe 'The Patch' or gel. The E2 gel is available in Canada at about four times what I pay here in Thailand. Richard Wassersug who lives in Canada has been using the gel for about 20 years with great results.
To add to ronron's reply, you could try to contact Richard W via a PM on this site (he is a member) and ask if he has any suggestions on obtaining E2 in Canada. He offers his time freely and abundantly to many men with PC, and is a true gentleman in every sense of the word.
Without a doubt it could be the bisphosphonate that's causing all that pain. I had my second Zometa infusion yesterday and my bone mets flared up like the California fires. I was in agonizing pain all night long. 1st infusion I had no pain in my bones (didn't have as many mets then) but I had severe head pain, fatigue, fever, chills, etc. But not 2nd time only bone pain and heavy sweats but no fever.
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