Hi David I'm happy that you have a team working with you now. I sure do hope that they can get to what is causing all of this neurological stuff that's going on, and also what's going on with your hips giving out. I hope the tests will show what it is, whatever it is. I'll be praying for you my friend.

I hope you're having a low pain evening.

love and hugs
Loretta

Sounds good David. Sometimes it helps to get someone new taking a look into things. They may be able to bring some insight that wasn't considered before.

Keep the faith brother!

Bill from Florida

Friday - well no PSA results, perhaps Monday, not much seems to happen at most doctor's office's on Fridays I find.

Also, disappointed that the supplier of my rolling walker didn't get all the paperwork completed, so no walker today. Perhaps early next week.

My hips gave out 8 times at PT today, and I fell twice there, while walking only 3 laps, each one being 1/10 mile.

David

UA

fortunately my therapist is very focused when she walks with me, lets me set the pace, so she was on look out the entire time. She did freak out the one time when I fell into her. There is so much atrophy developing in my legs, and now my upper legs, which isn't helping matters.

we are all hoping that the mri's will at least show something, anything, that then can be treated or at least explain what ever is going on with me.

david

thanks, squirm.

MS was ruled out at the time years ago, way before I ever had PC, but it doesn't mean it couldn't be something like that, hoping not.

I am more convinced that its even more spreading nerve damage, it more fits the pattern of what has been going the past few years, but seems like its endless.

david

Pat,

Not bad suggestions. Sure it will be straightened out by tomorrow. Really didn't have time to spare this weekend to surf the thrift stores (not one of my fave things, btw), and doubt I would have found something similar enough to what I am being advised. Still waiting for the VA final authorization on the VA med care (its coming for sure).

Bad weather this week here ahead, possible ice storm by Monday night into Tuesday, then its Thanksgiving too, so will be a hard week to squeeze it all in.

David

regular walkers are cheap and easy to find at used stores/thrift stores. I need what they call a rolling walker, with hand grips/brakes/fold up seat, etc. was told after medicare pays, my share will be 20 bucks or less for a new one.

calling the store as soon as I wake up, to see if I can pick it up tomorrow while I am out

suppose to have Pt again in the morning, but going to cancel, as I just had it Friday. my feet have never stopped hurting severely since pt on Friday. all weekend, been in major pain, so if I went tomorrow, all it would do it make me hurt worse. its because of a short holiday week, couldn't get a later in the week appointment

thank you beachbum.

no, its Tuesday, still didn't get psa results. so will have to call later today.

and yes, I am liking the group effort that is going on with me at Gibbs Cancer Center, never hurts to have extra minds and extra eyes studying a case like mine.

david

Mal, so good to hear from my friend!

To me, it feels like the nerve control to my hip(s) simply "turn on or off", like they are not getting a signal. There is no pain associated with this, unless, of course, I hit the deck. Today I feel working around the house, and got a nice banged up right elbow for my efforts.

Sometimes, its just the hip, but other times, I loose "connection" from the hip to the base of my knee. At those times, cane or no cane, there is no possible way I can keep from falling.

Hoping these special MRI's scheduled on December 3rd will show a clue of what is going on. However, as all the doctors consulting agreed, if it's still related to bad nerve damage post radiation, then no scan is going to show anything of significant. The new oncologist (the trouble shooter) is on a quest of her own, so I am letting her go to town, to investigate whatever she wants, it can only help my own oncologist assist in my overall care.

Hoping to have this rolling walker deal done by tomorrow, always some hang up with paperwork to stall off things.

Thanks for all your care and concern, sincerely hope you are holding your own. I do see that your latest PSA went up, what will that mean for you?

David

Yeah, Mal, I always forget that you got 12 years of life on me, lol. And you are and have been doing well. Even with your PSA at 2 plus at this point, I wouldn't be in a rush to go into HT. In cases like ours, and a handful of others, probably dealing with micro mets, that will take a long while to ever be big enough to show up on any scans. You live a full and busy life, I would always factor that into things if you ever make any advance treatment decisions. Least you know you won't be doing anything major, i.e. HT, until at least the middle of next summer.

Yes, it's still kind of surreal, the financial freedom part. One of my greatest concerns the past 5 years plus of not being able to work, was to how to provide properly for my wife at my passing. I sleep much better now, knowing we have no debts, house is free and clear, and that my wife will be properly provided for income wise, savings, and even health care. It was a huge burden removed from me, and though it came at a huge personal cost (my poor health and pain), it was worth it all to me, plus it took a lot of patience and determination to get this all to happen. I would do it all again, if I needed to.

Don't know what shape I will be in next October, but thrilled that we have already booked and paid for our 3rd cruise, this time with a suite and all, and for 7 days vs. 5 days. It's gives me something to look forward to, even this far in advance.

When my wife hopefully retires in 2017, we plan to go on a real transatlantic crossing on the Queen Mary 2. Though that's pretty far out there from my point of view time wise. But doesn't hurt to dream or plan.

It's also my intent to attend Sonny's GFMPH meet in the spring in Orlando, FL. My wife is hoping to be off as well, so she can visit her 2 brothers outside of St. Petersburg, but if she can't, I intend to fly alone, and finally hook up with a lot of others here that I still haven't met.

In the meanwhile, doing the best I can, with what I have to work with. Hoping the best for my friend, Mal, as well.

David

Hi David,
The leg giving out sounds like a compressed nerve issue with the low back or around that area. You might try a pair of compression shorts to see if it helps with that.