Long overdue update: 09-12

Don't even remember the last time I posted here.

Mostly been a waiting game. For appointments. But September is here, and I have many appointments lined up finally. Been waiting all these months to get into a good neurologist for starters. I finally see one next week. Same problem - left leg burning/stinging - hips to knee, then it totally numbs out.

Meanwhile, new neuro-related problem started up about 6 weeks ago. At least 1-3x a day, my left hand starts shaking really bad, I have no control over it. Being left handed, its becoming a big problem. Can't even sign my name, or control my mouse or read a magazine because of the shaking. Hopefully new doctor can address both those issues.

Been fully diagnosed with Moderately Severe PTSD, been accepted into this special VA treatment program, suppose to last a min. of 12 sessions, not counting the one on one I am getting already from another VA doctor. They put me on a new med to try to control the relentless nightmares (basically anytime I am asleep), but the meds interfered with my sleep meds which only worsens the problem. So they told me to stop taking it until I see the VA doctor again.

I see my new Oncologist for the very first time this week. It took the cancer center forever to getting around to assigning me a new doctor. I am really wanting a new full body bone scan, its been a long time since my last one, and the pains in my hips and legs are worse than ever.

Past 2 months, all my pain meds are being handled through a dedicated pain doctor and clinic. They have been really good working with me, quite the opposite of how I thought it would turn out. My pain doctor felt that I was being under medicated, not over medicated as some of my critics were thinking. So he upped my breakthrough meds to give me better coverage throughout the day.

On the PC side, will wait and see what approach or changes the new doctor thinks I need. At this point, I am open minded. Kind of curious to see where my PSA is at, since the lapse in doctors took place.

I know there's more to report, will add to this when I can clear my head.

And I will try to take some time to catch up here and see what's happening. Haven't even been lurking during my most recent "break", would kind of defeat the purpose. But hope all the regulars are doing well. I am quickly coming up on my 8 year mark at HW.

Purgatory

David,

Thank for stopping in and giving an update. Hope the new round of appointments will result in some specific and effective help for you. Keep the faith.

Explorer

David, you are one of my hero's. Always look for your posts.

Great to see the pain Dr has things under control.

All the best,

Chas

David,
I had been thinking about you, so thanks for updating us. Will continue to wish for the best for you.
Michael

Yes, indeed, thank you for the update, David. You are and have been one of the mainstays on this forum (in lots of way), and a lot of folks here continue to hope and pray for the best for you.

Do continue to let us know how it goes.

David: As long as you keep updating and adding the occasional piece of advice, I know you are still in the game. Prayers

Hi David... Hopefully just posting gets some of the issues out there and has some therapeutic help to you. I have the similar nerve pain in my left thigh from near hip down to knee. I have had it since my airborne ranger days in army. Was diagnosed with meralgia paresthetica by neurologist and put on Neurontin that I take when the pain flares up. When it is not flared up, my thigh is numb. Chemo hasn't helped that issue, but I was more concerned about PCa. I wish you luck with that and success on any VA treatments for the PTSD. Take care! -JR

Thanks one and all, nice to be remembered.

I still choose to keep my current (or most recent in this case, about 6 months old) PSA readings private. In the past, there were some that ridiculed my approach to having metastatic PC along with how my former oncologist and I handled the situation.

I will say, it's still double digit in front of the "dot". At one point, it was approaching triple digit, with no evidence of mets, and without any advanced treatments. Then, for no rhyme or reason, it dropped back. However, in the past year or so, its been on a slow and steady increase. I have no idea where it will stand, but tomorrow, they will take a new reading.

And I am curious if the new doctor will have a different view on what to do, or not do. As I felt in the past, I really don't have a vested interest in subjecting myself to more low quality of life side effects, for what would be non-curative treatments. I am slightly over the 8 year mark in my PC battle, with no additional treatment since the end of 2009, and I am still here.

Due to increasing bone pain in my legs and hips, I am overdue for a full bone scan, hoping the doctor agrees and will set up one. I stand the risk of lighting up like a Christmas tree with my approach, but I have accepted that risk thus far with no apparent harm.

While many of you don't/won't agree with me, I am puzzled by those that suffer from PSA anxiety, especially when being overly concerned (IMO) about microscopic raised in their PSA especially those with ultra sensitive readings. To those bringing in numbers under the legendary .10 mark, I absolutely can't understand the fear or worry. And I still feel that many, out of misplaced fear, jump into secondary treatments way before it makes sense. I guess one would have to be dealing with multiple QOL issues to truly understand my view on that. Its' all about trade offs in life.

At age 64 now (56 at dx), its all about quality, nothing about quantity for me. If someone guaranteed me 20 more years of life with what I have been dealing with, I would turn down the offer. Couldn't imagine choosing to suffer that much longer by choice. We all have to die some day, some how, some way. It's best to comes to term with that concept earlier, rather than later IMO.

End of discourse for the night

To those that still care and are sincerely concerned for my well being I appreciate it. For those that can't stand the sight of my posts, please pass them by without comment, does both of us a favor. I am an acquired taste and perhaps a bit of an odd duck, but I can live with myself and my personal health related decisions.

Thanks

Well, why is it that I always have to have the problem, even with the most common stuff?

Had a super busy day, had to be up at 745 this AM, which in my world is way early, as I had only gotten about 3 hours sleep prior. Spent 3 hours with the VA, other than being long, went well. Began the preliminary session to the PTSD treatment program, and had to go through a suc-ide prevention assessment and check list. Required. My real sessions are going to be every Wednesday at 3 PM, min. sessions is 15, but was told it may be as many as 25. In the 2nd evaluation, was ranked moderately severe, right on the edge of severe. Was also told that some of the sessions will be emotionally brutal, and that if it were too much for me, I could terminate as session, and pick it up at the next.

That part was the good news.

So I go the 35 miles to the cancer center to meet my new doctor. Spent 15 minutes with the nurse, no issue. After sitting on a rock hard chair for 30 minutes alone in a patient room, nurse comes back and tells me the doctor (only oncologist on duty at this location) on this day, came down sick as a dog, and all his remaining appointments were cancelled. Guess even doctors are human. So I have to go back next week at the same time and start all over again. That black cloud always has a way of finding me, lol.

Got back home, and crashed for nearly 3 hours.

worried, thank you, and huge sigh of relief that there wasn't cancer in your finger. better safe than sorry.

David
Wow, are you being patient. Any thoughts about changing your name to Job.

As ever I feel frustrated that I can't make a suggestion for you that will solve even one aspect of your trials and tribulations. But I'll stil suggest something and may have suggested it in the paost any way.
How about music to sleep by: some sort of music that you could only associate with something pleasant that might then trick your brain into not having a nasty diversion.

How about a sleep pattern investiagtion in a lab with your head wired for brainwaves to see when your brain goes into overload on the REM side and gives you the nightmare. Perhaps you get some proper sleep before the nightmares kick in and then maybe you could try and an alarm to wake you up after not very long, before you get the nightmare? My thoughts being that you might be able to get several short bouts of sleep without nightmares.

I know you do not drink but how about some alcohol for medicinal purposes before bed?

And let's really think outside the box. How about something to numb your leg, something that would take away the pain even if it also left you unable to move it, though I do mean just temporary, but maybe it could be tried simply to give you a break from the pain.

Regards
Alf

Jack - thanks. It's been a simple and safe plan for me. Neither HT nor Chemo would be curative - both would inflict additional QOL issues on me, and without any physical evidence of mets, no need to panic into another treatment. Not like nothing is being done, PSA's being done on a regular basis, just not all the time like some do and scans have been ordered when needed.

Alf - so good to hear from you. Will keep some of your suggestions under advisement, hadn't thought of some of them. Still have to say no on the alcohol part, has to do with a personal vow I made over 43 years ago - I can not break it. Every male on my side of the family becomes dangerously violent when drinking, I was the same way when I drank decades ago - I don't need that in my life. Even if medical "M" was legal in my state - it isn't and probably will never be, wouldn't do that either.

thanks, wilderness

thanks, faust, let me know next time you might pass through Greenville, perhaps a hookup?