Could use experiences and support now

Currently dealing with left leg femur pains that are pretty constant an substantial. My UnTX urine test for bone breakdown has been high for months, which is a red flag for the dragon being somewhere chewing on your bones. I got xray and ct scans and found femur with about 8" long lesion (sob), no wonder it hurts. The new is it is not swiss cheese per se but has thinned and some risk of fracturing now or later, either way they can put a pin in it and supposedly repair it. Psa was pretty high in June, down fairly well with Zytiga usage throughout the months, other markers also used by my doc, so not totally surprised to see ugly show up.

I started 10 sessions of Varian Trilogy machine radiations to solve pain issues (needed asap), had 2nd session today and it is painful as ever, maybe the rays are ticking off the PCa pac-man sob's. I take some pain meds for this situation and it sometimes work and sometimes doesn't do much, man the pain today is awful and hope it stops soon.

I had radiations on T-9 and L-4 last year and the pains are gone and felt great thereafter. The L-4 I felt pain relieve upon the first radiation, that was amazing. I plan on helping the femur regenerate bone density via things like: estradiol or estrogen, D3 usage, maybe consider adding bone enhancement drug....thus avoid a future fracture is the idea.

Anybody got experiences or second hand info on how some femur responses turned out and how soon or good and such things? Guys whom are getting out of psa control, the UnTx (Pyrilinks-D) or other names for this urine test are worth doing and monitoring, so as to get an idea of maybe how soon you might wish to get a scan or see real escalations that need noticing.

Appreciate any replies you may have.....

Lousy news. But you now know there was a reason. But then ...

I've not had any spots treated yet. Doc has me taking the D3, but also vitamin K2 + Calcium, in theory to help the bone loss from HT.

Bob,

Good to hear from you, but sorry to hear the news.

I absolutely understand the pain part. You are fortunate that you can still use radiation to help control some of the mets pain, I don't have that option.

And I hope they got you on sufficient pain meds. If you are going to be long term with the pain, despite the radiation, or if this is going to be the path for you from this point, I would highly recommend asking your doctor if you could be put on fentanyl patches, like I use. Its only meant for long term pain situations. I have no ill effects from being on them, doesn't even cause constipation with me, but its a huge help with the pain relief.

Wishing the best for you, and glad you contacted us here again. You have been missed.

David

Sorry to hear this news. You're in my thoughts and prayers today.

Andrew

Zufus it is great hearing from you but wish the news was more upbeat. I agree with John T's statements. My pain is in the ribs and spine and is getting to the point that I will need radiation or meds and will learn about my most recent PSA tomorrow. Keep us posted and my best to you.
Michael

Hi Bob,
Sorry to hear about your pain situation. RT should take care of that. Another option is radium-23 (Xofigo) which has demostrated a reduction in the use of opiates in PCa metatatic bone pain. Because it can build bone it might help prevent a future fracture.

Wish you a quick resolution to your pain. Take care.

RalphV

Bob, I hope you are feeling better by now. I have not been where you have with the disease so I can only offer my best wishes, not my knowledge. There is a lot to do and I find you the master of treatment combinations, so I am confident something is on the horizon that will bring another "ah ha".

Jack

Bob-Glad to hear from you. Not so glad to hear of your situation. You are one of the early guys to me here and other sites. As a fellow Michigander, ive followed your posts closely.
Has Xgeva been a consideration? Also,Xtandi might be a option regardless of not having prior chemo.
As one of my early mentors,I wish you all the best. All of us here are pulling hard for you. Keep us posted. Tom

Hi zufus, glad u got some relief, that´s what they say in all the literature, that radiation is very effective for pain. You don´t think that Taxotere can offer you some relief? All these years you were on some form of HT, Taxotere is a different mode of action. And you know, what some have mentioned here, that doctors at hospice care are some of the best pain specialists around. From what I understand, you don´t have to be in-house patient in order to see one of their doctors, but not exactly sure how it works. We are here for you...hugs.

Bob, I have no insight or experience to add re your current situation but just wanted to weigh in to wish you the best.

Jim

Z:

Nice to hear from you, but so sorry to read this.

I have no knowledge to offer, but you are in my thoughts. I am pleased that the radiation now appears to be working.

Onward, then!

Mel

Take care of yourself, Zufus, we need you here. I can't count the number of times we have heard from a new guy, lost in the wilds of the PCa jungle, alone and cut off from help, only to have you step out from behind a tree in your gilly suit and led him to a better place. Nobody knows the wilds of the PCa outback like you do.

Post Edited (PeterDisAbelard.) : 2/26/2014 11:47:30 AM (GMT-7)

Bob, like many of the others, I have no personal experience in dealing with the things you have on your plate.

I just wanted to chime in and let you know, I am thinking about you and hope and pray that you find some comfort and answers soon.

Sonny