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Update 10-04-2017

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Posted 10/5/2017 3:11 AM (GMT 0)
Don't know where to start.

After spending nearly 3 months with 2 different neurologist groups (working together), they are close to a final conclusion. They both agree that I have a severe form of temporal lobe epilepsy. I should know the final dx. by the end of the month

Been having endless balance problems, severe shaking. Mostly my hands, but sometimes my entire body. Toxic exposure from my past is suspect.

My oncologist visit was postponed (their end), so I don't see him until about 3 weeks. Extensive scans are already lined up prior to the visit. They will be looking at both kidneys, my liver, and an enlarging lump in my lung, as well as a full body bone scan.

On the PTSD and depression front, after 14 months of visits, physco therapy, been only limited improvement. They are still suggesting I go in-patient to a special VA facility in VA for 4-6. I was recently accessed as High Risk Patient again.

My lithium was increased by 50% recently, but has shown no signs of helping me.

Meanwhile my chronic pain has increased in both scope and severity.

I have no idea where my PSA stands, kind of the least of my woes. And yes, despite treatments, still having vicious nightmares every night. Been going on since January of 2016.

My wife retired from nursing on her 62nd birthday in August. She is working a little PRN when she feels like it.

My youngest son and his wife are moving to CA at the end of the month.

That's all I can think of at the moment. Anyone want to trade places?
Posted 10/5/2017 3:39 AM (GMT 0)
Purgatory, I do not want to trade. I'm sorry to hear about all your woes, it all seems so overwhelming. I don't know of anything to offer except to continue praying for you, if you have no objection. Not here obviously, but privately.
Bill
Posted 10/5/2017 4:32 AM (GMT 0)
David, I'm sorry to hear about your added woes upon woes. Take care and hang in there.
Posted 10/5/2017 4:56 AM (GMT 0)
as always my friend, you are in my prayers.

Andrew
Posted 10/5/2017 11:37 AM (GMT 0)
Sorry to hear that things are not getting any better Dave, bestvto you for some light at the end of the tunnel, soon.
Posted 10/5/2017 12:01 PM (GMT 0)
So, so sorry for this host of very major problems.

Others on the board may have serious problems but they seem to pale in comparison. Am glad at least you have an army of caregivers to attempt some relief for you, and really hope they can do something for you. At least the epilepsy thing seems to be getting pinned down. Maybe that will fix the balance deal.

Robert
Posted 10/5/2017 12:03 PM (GMT 0)
David,

I'm kind of at a loss here to know how to help, if that makes any sense. Of course, your issues require the care of many specialists far above my pay grade, but as one guy to another, I wish there was a way we commoners could help.

One thing we can offer is our moral support and prayers. When I see you have posted, I drop everything to read it, because I care about you. Maybe that's how we can help - just by letting you know how many here care about you.
Posted 10/5/2017 12:26 PM (GMT 0)
Prayers and a helping hand are all we poor creatures have to offer in a time when you need much more. So sorry for your added issues.
Posted 10/5/2017 1:54 PM (GMT 0)
Did you have all these problems before your first radiation treatments? I had severe se from only 2 treatments, something no one on here ever heard of and my doctors told me it was a form of radiation poisoning that was very rare. I am very sorry you are going through hell every day, I know how you feel since my wife and I were battling cancer at the same time. Hers was small cell lung cancer so I put my issues on hold until her death last October. I went through the grieving and depression for about six months and when I returned to get treatments my psa was 16.7 and I started IGRT, 2 treatments later I'm in emergency with doctors scratching there heads giving me blood and antibiotics. The moderator told me I should talk to you since we were the only 2 who had these very rare se.
Posted 10/5/2017 2:07 PM (GMT 0)
David –

The very existence of this thread and the response to it is proof that there are a bunch of people here who continue to be concerned about you.

When the thought went out "Where's Purgatory?" and then you were gracious to reply with this thread, the response has been quick and sincere. I myself was thinking about you not long ago, hoping that all was well, or as well as it could be.

You have been one of the rocks, the stalwarts, of this forum, and certainly the dean of posters here. Your continued presence here is a boon to all.

Please do stay with us, and keep us updated. We look forward to any and all of your posts.
Posted 10/5/2017 5:51 PM (GMT 0)
David,

Thanks so much for posting an update - I check in here regularly mainly to see how you are doing. So sorry things are not getting better for you. Sure wish there was something us commoners could do to help, besides the moral support, of course.

Peace.
Lynnwood
Posted 10/6/2017 12:32 AM (GMT 0)
I'm pretty new here but after reading your post I hope I can be a tough and brave as you if that time comes I admire heroes like you that have it just about as bad as you can yet you think of wife and children! My hat is off to you and wish the best for you in your walk of life!

Larry
Posted 10/6/2017 1:05 AM (GMT 0)
May you be well.
May you share in all of the blessings springing from the good I have done. Oh that I could transfer them all to you.
Roger
Posted 10/6/2017 1:20 AM (GMT 0)
David,

Great to hear from you! So sorry to hear of the latest updates! Trust things will turn around very soon!

Keeping you in my thoughts and prayers.

Dave in Bartlett, TN
Posted 10/6/2017 6:21 AM (GMT 0)
thanks to each person that replied. prayers are always appreciated. kind of hard to post often here, as I never really have any good news to report. and who wants to hear bad news all the time. my pc journey began in august of 2008. it has been 9 years of unending hell. new problems and ailments keep popping up all the time. I was 56 when this began, at the peak of my career. I am 65 now, and still caught up in this true purgatory. days, weeks, and months just blend into a blur.

I do thank my local VA outpatient clinic, they have been good to me, and are more than willing to try whatever is needed to help me.

I try to lurk here once a week, see a few old names still, and lots of new folks I really don't know. I wish everyone well in their own PC voyage, no two are ever alike. I am certainly not the only one suffering.

Most of my unique problems, is still related to my SRT back in 2009 that went so terribly wrong. While it was the RO's fault, I still blame myself for consenting to what was my 2nd major radiation event in a 9 year period, when my 1st one did so much damage. It was the one that eventually destroyed all my teeth and did bone damage to my jaws, among other things.

If only I could go back in time.
Posted 10/6/2017 6:38 AM (GMT 0)
philmire,

welcome to hw pc. sorry to hear of the passing of your wife. couldn't imagine that, as I have been married for nearly 44 years.

I had none of the side effects prior.

My PC related SRT was my 2nd major radiation event within 9 years. In 2000, I had 35 treatments totaling 70 gys. in my neck after surgery for my 3rd event of an ultra rare but potent cancer, porocarcinoma. I was pretty burned from it. Ultimately, it caused every tooth in my mouth to rot out from radiation poisoning, and it also ate away at the some of the bone in my upper right jaw. The VA even sent a radiation damage dental expert to examine me. Due to the damage, I had to go through 30 hyperbaric treatments before they would even agree to do surgery on me.

Had PC surgery late in 2008, it failed fast, and before the end of 2009, it was suggested that I needed SRT. It was 35 treatments and a total of 72 gys.

Due to all my endless stricture issues and failed surgeries (6 of them), they put a Suprapubic catheter in me prior to SRT, knowing that the radiation would only make the strictures worse. I had it in me for 51 weeks.

My RO didn't compensate that with the catheter in me, that my bladder would always be empty. Could have been easy to remedy by clamping it off during treatments and having me drink water.

By the 4th treatment, I began to feel a strong burning when the machine indexed to the 6th position. Reported it, but RO laughed it off and told me it couldn't happen. Like a fool, I toughed it out all the way, each day getting more and stronger burning. How I made it through it, I will never know.

Short version. The radiation failed fast. It did extensive nerve damage to me, still on going. Left me 100% disabled, and with severe chronic pain and fatigue.

In 2010, I had to have Urostomy surgery (major), and have been living with a stoma to pee from ever since. My bladder and bladder neck were fried that bad.

And I still have metastatic PC.

All for now.
Posted 10/6/2017 7:22 AM (GMT 0)
when it rains is pours

Hang in there dave
Posted 10/6/2017 7:34 AM (GMT 0)

Purgatory said...

Most of my unique problems, is still related to my SRT back in 2009 that went so terribly wrong. While it was the RO's fault, I still blame myself for consenting to what was my 2nd major radiation event in a 9 year period, when my 1st one did so much damage. It was the one that eventually destroyed all my teeth and did bone damage to my jaws, among other things.

If only I could go back in time.

Hey Purgatory -- sorry to hear about your issues...

I had about 4 or 5 chest CT scans in 2013 .. with contrast... which was a lot of radiation.

I'm wondering if that could have helped cause the cancer in the first place...

anyways, just wanted to let you know your story touched me, and I wanted to say something so you know there are people here with you...

Keep your chin up man... I know it's hard, but think about your brain as a bucking bronco ... you have to control it, or it will control you... I know it's harder than these simple words.

Zzarth
Posted 10/6/2017 9:00 PM (GMT 0)
David, sorry for the long bumpy road. We all hope and pray for pain relief; most important, spending time with that newly retired wife. Perhaps a trip to California to visit your son will be in your future?

Our best to you,
Jake
Posted 10/7/2017 12:57 AM (GMT 0)
Hello David,

Since you hadn't been here for some time, I expected that things weren't going well. I don't know where to begin, or how to start, or what to say. I am deeply sorry for the misery that you are experiencing. I don't know how you do it. You are a tougher guy than I. I am at loss for words.

For those who don't know us, David and I were both in the Navy and both rode Triumph motorcycles. I'm several years older than he, but we kind of connected. Swabbies. And those lovely two cylinder vertical twins with their lousy carbs and Lucas electrics. James Lucas - The Prince of Darkness.

In January it will be seven years since my wife of 41 years died. I'm doing well. Very busy with a wonderful grandson who turned 11 today. Going to the Wings Over Dallas air show tomorrow. WWII airplanes. They will have an example or two of a type I flew freight with in my early (struggling) years.

I wish that you were better David. I do.

My Best to You My Friend,

Bill
Posted 10/7/2017 5:27 AM (GMT 0)
Hi David,

I've been away from HW for months, so it was typical that you should be reporting in to let us know that your woes have worsened when I popped back.

I never know what to suggest for you so, maybe the in-patient plan would be a help, but the better thing may be to say is let's hope your wife enjoys her retirement!

All the best
Alf
Posted 10/7/2017 10:07 AM (GMT 0)
David, you're still fighting a good fight.

I only wish I was half as brave as you are.
Posted 10/7/2017 7:11 PM (GMT 0)
David, I'm glad you checked in. Don't worry about sharing 'bad' news.... we'd rather hear than not. Finally got hubby to an oncologist. He's now on Cassodex as well as the Lupron. PSA is now up to 0.1 (up from 0.00 to 0.01, 0.02.... over last year). Will have to talk about chemo if it continues to rise. Doubling rate was roughly 4 months.
Also glad to hear your wife retired. I know she enjoyed her job, but it was so physically and emotionally draining for her. I know you two will enjoy having more time together.
Prayers continue.
Posted 10/13/2017 12:52 AM (GMT 0)
thanks for those that posted since I last checked.

jet - thanks, ltns. still no more motorcycles in my life, would not be safe. but do have a couple of play cars, 1977 Chrysler Cordoba and more recently, 1973 VW Thing. Both I bought from original owners.

English alf - good to hear from you too
------------------
Woke up Sunday in such severe body pain, entire left side, hips to toes. Wife had to help me walk through house. This happens 1 to 2 a month, doctors are clueless. Talking pain level 8-9. Spent all day Sunday in bed, most of Monday, and part of Tuesday. Horrible situation with no rhyme or reason.
Posted 10/13/2017 1:38 AM (GMT 0)
Good to hear from you David, and sorry about the continued pain. I still like to think about that video you did for a Company that provided some type of treatment for you. Seems like just yesterday.
Michael
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