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Update 05-09-2018

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Posted 5/10/2018 2:30 AM (GMT 0)
Sorry been a while since I posted.

Saw my oncologist in late April. Did a new PSA, same as 6 months prior, 24.00. When I see him in October, going to have full series of bone scans. Despite the PSA number, said with no signs of scanable mets, going to continue watching and waiting. Haven't had any other treatments since my failed surgery in 2008 and failed SRT in 2009. Have bought almost another 9 years come November.

The Parkinson's is kicking my butt and making my life hell. It's progressing quickly despite the meds I am on. Most days I can't type or use my cell phone or text or even write. Have serious balance issues, feel like I am always leaning to the left.

Other than that, just hanging in there. Chronic pain still a major issue from my last radiation event

David
Posted 5/10/2018 2:45 AM (GMT 0)
Hi David,

Thanks for the update. So sorry to hear that the Parkinson's is such a problem.

I understand the "leaning to the left", I have periodic spells of vertigo that almost always are centered around my left ear, so I lean to the left... am just getting over a 5 day vertigo spell. Will be doing a lot of ENT tests next week to see if they can figure out what's causing these episodes - getting more frequent and have been having them over 5 years now. Probably some Lupus craziness with no solution. Sigh.

Sorry you have chronic pain as well. No rest for the weary sometimes, huh?

Healing thoughts as always,
Lynnwood
Posted 5/10/2018 3:10 AM (GMT 0)
Thanks for making the effort to update us, David.
My dad's also fighting rapidly progressing Parkinson's. He's a right-leaner (only with respect to Parkinson's) and a foot shuffler. Physical therapy seems to be helping him balance and pick up his feet. Take all the precautions you can to avoid falls, please.
Best wishes,
Richard (SP)
Posted 5/10/2018 3:19 AM (GMT 0)
Hi David.....Wow, it's amazing to see your PSA just frozen at 24 without any active treatment...With all the bad news you have had to deal with, it's great that at least you have your PC under control ..Are you taking any meds for the Parkinson's ?? If so, maybe one of those has a nice anti-cancer effect....
Posted 5/10/2018 4:23 AM (GMT 0)
lynn - so good to hear from you

saipan - dr. thinks the left lean is because i am so left handed, what they call left sided, but I am stage II which means I have symptoms on both sides. I have been in PT weekly for over 7 years

fairwind - my dr. is amazed that my PSA remains that high without any mets that can be scanned. But we all know how fickled PC can be from man to man. I am on 2 major PD meds, each has its own severe side effects.
Posted 5/10/2018 12:41 PM (GMT 0)
Purgatory: I follow your posts, wish you well and send all of the positive energy I can.

May all beings be well and may all beings share in the blessings springing from the good I have done.

Roger
Posted 5/10/2018 1:41 PM (GMT 0)
Hi, Purg. I don't post much these days, but I do follow what's happening on the forum, and I'm always glad to see a note from you. We've never met and probably never will, but when I say a prayer for all those dealing with this darned disease, you're included toward the top of that list. Hang in there, and don't be a stranger to this site.
Posted 5/10/2018 2:14 PM (GMT 0)
So sorry about the Parkinson's! I tend to lean right, but it has nothing to do with health. smile

Purgatory, you are the one I probably have the greatest admiration for in dealing with this shiite show.
All the issues, problems, carp you have gone through and yet you continue to soldier on.

Keep up the fight and may many blessings fall upon your shoulders!
Posted 5/10/2018 2:51 PM (GMT 0)
David, it's good to hear from you, as always.

I have often thought about you, especially those times when I have been here on the forum, and admittedly have become concerned when we hadn't heard from you in a while.

It's distressing to hear that Parkinson's has become a problem for you. But to judge from how you have so strongly dealt with your health issues in the past, I know we can all be very confident that you will show the same kind of strength and character in dealing with it as you have shown in the past.

I suppose you can take at least some consolation in knowing now what the problem is? I remember a while back you told us you were struggling with symptoms, but the doctors were having no success in determining what the symptoms were from. Has that all changed now? Have they at least identified by now all the things you are dealing with?

Again, great to hear from you, please do post whenever you can, and remain assured that there are a bunch of us here who genuinely want to keep up with how you are doing.

Take care.
Posted 5/10/2018 3:06 PM (GMT 0)
Good to hear from you David. You are a warrior. Thanks for the update.
Michael
Posted 5/10/2018 7:32 PM (GMT 0)
David,
Thanks for the update. PSA 24 and holding, that's good,9 years that's good too. Parkinson's, well here is hoping for a cure and treatments in the pipeline soon.
You have been called here amazing, inspirational, blessed, top of the list. (especially in posts!)
To me ...I am proud to call you all of these and most of all my "battle brother".
Hope this link is clickable, this young dude can really sign a song!! :
Wings aka Dan in SoCal

<https://youtu.be/lop2F6hrxL0>
/youtu.be/lop2F6hrxL0
Posted 5/10/2018 10:02 PM (GMT 0)
Nice to see you visit again! There is comfort knowing you are still fighting and it seems like holding your own.

Best wishes to you,
Jake
Posted 5/11/2018 2:16 PM (GMT 0)
Hi David,

Thanks for the update, sorry to hear about the Parkinson’s.

The PSA is very good though, one of your medications has stopped it dead in it’s tracks and even reversed it as the number you had a couple of years ago was higher. With all the medical issues you have had, this is a ray of light.

Wish you the best,
An
Posted 5/21/2018 1:38 AM (GMT 0)
Thanks for the many replies. Yes, have been chasing many weird symptoms for years, and the doctors and specialists just couldn't connect the dots, until I met this new neurologist.

Now that I know for a fact, that I am dealing with a real known disease, the Parkinson's, I feel better that it was not my imagination. Still doesn't take away from the seriousness of the situation, however.

Got another sword over my head. Saw my dermatologist on Friday, I have a nasty looking growth on my lower right back. A biopsy was taken, and will know results later this week. The initial opinion is that it is a tubular melanoma growth. If so, it will be my 6th cancer, and the 4th different type.

Since Friday, another similar growth was found on my left rear hip. Neither growth was there even 2 months ago.

The fun continues, ain't cancer grand
Posted 5/21/2018 2:11 AM (GMT 0)
Glad to hear your PSA frozen. Interesting thought about parkinson medicine playing a part.

I feel for you and dealing with Parkinson. I watched my father in law with a rapid Parkinson disease, a cousin who had breast cancer than Parkinson, and a cousin who has it now. (My father in laws nephew)

He is relatively young man who has always worked out and stayed in shape.

My best to you. I have heard of people who went to different Neurologists and then all of a sudden they found medicine that really made a difference.

Keep hunting for other Parkinson meds.

I assume you have already checked into that brain stimulation surgery?
Posted 5/21/2018 4:25 PM (GMT 0)
You've certainly had the bad luck David. We're all hoping for the best for you.
Posted 5/21/2018 6:26 PM (GMT 0)
David,
As ever I read your updates, and wince.
And then I try and work out whether I should reply or not, or offer a suggestion, or crack a joke, or mention someone I know that's also struggling with multiple health issues at the same time.
I'll go with the light hearted:
There should be a link to a powerpoint presentation explaining it all or maybe a spreadsheet. Next thing they'll be a line along the bottom of my screen with daily updates on what else your body has decided to do to you!
Maybe I should contact the Pope and ask him to get the church to redefine Purgatory!
I'll finish by being English and say that I'm sitting here with a cup of tea, looking out at the roses and apple trees in the garden, and thinking about you.

All the best as ever
Alf
Posted 5/22/2018 11:45 PM (GMT 0)
English Alf, good to hear from you. Love to join you for a spot of tea in your garden. Have distant memories when I lived in England as a child, believe it was from 1952-1957.

Saw my neurologist today. Took me off the 2nd PD med, as it wasn't working and giving me bad side effects. Put me on a new med, one that suppose to slow down PD related dementia. My short term memory is starting to take some scary hits. Kind of blink out at times, even if its for a few seconds, and got lost yesterday driving to my county VA office. Been there I bet over 50 times, easy to find. Ended up on some back country road I had never been on before, really felt confused and turned around. My doctor agreed that my particular case of PD seems be progressing quickly, so I am trying to be well prepared.

Waiting for the VA to fully accept my dx, as it is covered under the Agent Orange provisions from Viet Nam war. Already 100% P&T for my PC, so it won't get me any money, but will make the VA responsible for any future treatment costs.
Posted 5/23/2018 9:11 AM (GMT 0)
David, I am so sorry to hear that the Parkinson is really kicking in and affecting your memory. Dementia is a fear I have. Then, you have all these other health issues to deal with. It must all come to a standstill. As Donna Summer sang, "Enough is enough!" I hope you find a doctor that can help you deal with all of this. Prayers coming from us both. God bless....

Ron still has vertigo issues, but is otherwise okay.
Posted 5/24/2018 2:20 AM (GMT 0)
aimzee,

so good to hear from you. glad to hear that ron is mostly doing well.

I have a very good neurologist. they are hard to find, I went through at least 3 bad ones in the past. I also have one of the best, if not the best, dermatologist in my area. Still happy with my PCP, been with him for over 24 years. My VA PCP is just ok, not real fond of him. My current oncologist is adequate, but no where the experience of my former one.

It's really hard to find solid doctors. With specialists, many here will not even take new patients, as there is a critical shortage of doctors.
Posted 6/7/2018 6:56 PM (GMT 0)
I always like to check in even though I usually don't reply. I'm sure most will agree the importance of finding a GOOD doctor. Glad to hear you do have a very good neurologist. Ron and I send our thoughts and prayers! I hope you will be able to enjoy this summer without any fierce decline.

I am concerned with Ron's reaction and probable addiction to pain killers. I don't know if this forum has a discussion topic about pain. I need to check that out. I hope your wife is enjoying retirement. Take care. *HUGS*
Posted 6/7/2018 11:59 PM (GMT 0)
aimzee,

been getting all my pain meds through a dedicated pain clinic, and let me tell you, they are tough on patients. not a good place to go to if one is a drug seeker or addict. the way my dr. tells it, if you are a long term chronic pain patient, and your body truly needs "x" amount of whatever drug, then the drugs will simply deal with the pain (though not eliminate it. Of course, your body becomes dependent on them, but that is way different than being addicted. lot of people don't know the difference.


like in my case, been on strong meds for nearly 8 years, and in that time, i have never, ever taken a single pill other than what is presribed. they count all my pills monthly, and my used and unused patches, and i have to take drug tests about twice a month. its serious business, trust me.

on another note, finally got the biopsy results for the suspicious growths on my back, and both came back benign, which was a victory and miracle. dr. was totally convinced that one of them was melanoma.

however, my parkinson's is still progressing at full speed. dr. feels it's partly because of what poor condition i was in prior to the dx. makes sense. just dealing with it one day at the time. not sure i will be able to drive a year from now, and that saddens me, because I have been a car guy since i was six years old, lol.

my best to ron, if he ever would want to talk to me (Phone), I would be open to it.

bless you both
Posted 6/8/2018 12:43 AM (GMT 0)
wow this/my self deleted post was carthetic...and so fricken true in the highest sense of the word..those that know...well they just do...those that do not know...well they just...blah..blah...….there ain't many of us left...
Posted 6/9/2018 3:13 AM (GMT 0)
David---You'll probably outlive us all, miserable to the end.
Posted 6/9/2018 2:35 PM (GMT 0)
aint it da trute
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