Personal Update 2/14

Ed - thanks. For all my medical battles in the past, including my 3 previous bouts with a rare and deadly cancer, this PC is a bit** for sure. For me, its been very unpredictable, and has proven to be far more aggressive than my sheer stats would indicate. When first dx, considering what I had beaten before, wasn't all the troubled or worried. In my ignorance and innocent, it was like, okay, I got PC. Ok, I will have surgery, tough out the recovery, and that's that. Little did I know what lay ahead. Such is the game we call life.

And yes, for those of us fortunate enough to have really good doctors, we should be thankful and appreciated. Not all are that lucky, some guys have to put up with crappy doctors because they have either limited choices, resources, or both.

I cringe when I read guys talking about their doctors where they are lucky to get 5 minutes of the doctor's attention or time. I have been spoiled by one hour visits with all of my doctors.

With a complicated case, one can't always just cram everything into a 5-10 minute visit. My oncologist's nurse told me, that they set one hour appointments for him, so obviously all of his patients have ample time. He only deals with advanced breast and prostate cancer cases.

david

David.hi I have not posted for a couple of months,but everyday, I log in.

I feel your pain,becouse I went thrugh a lot with my father,and now mon is 86,and have dementia,do not get up from bed,and seen her deteriorating hurt a lot.

I can only ofer you my sincere prayers,that the strengh you are looking fore can be found,I am sure you will find it.God bless you.

keeping faith, on the radiation part itself (and this is an important legal point in my case against the clinic), when I started reporting physical burning pain to my RO after the 4th of 39 treatments, she should have stopped the treatments, and investigated why I was experience any pain. Normally, RT is completely painless when being administered. One would think that a doctor, knowing this, would not have proceeded with the treatments until a reason was found. At first, they were playing the game "oh, it's all in your mind" or the famous "it can't happen". none of those answers helped me during the rest of my treatments. it was always at a very specific indexing of the IMRT machine, that the burning took place. It was in the 6th index, every single time, so to me, it was obvious that something was very wrong. And it did get worse from treatments 5-39 until the whole ordeal was over.

thank you, sheldon my friend, so glad to hear from you. you are right, i do not post for sympathy, that i don't need or want. just wanted to give a brief update while i am at this in-between stage of my journey. for most men here (and i am grateful this is the case), many get to go on with their normal lives pretty much after treatments for their cancer, unless they have recurrance or other complications. this life of mine, after all this time, has become the new "norm" for me. after being in the PC game for 3 1/2 years now, i can't hardly remember clearly anymore what life was like before all this relentless pain and fatigue. so anything that helps improve my QOL, i.e. even this rehab, is a good thing in my book. anything would be an improvement.

despite what some of my critics think, i do not enjoy being on all the pain meds that i am on. but without them, i would basically be non-functional, pretty well resigned to either being in bed much of the time, or just lying about. there is no pleasure feelings with any of the meds, not even a little bit. they simple take away the pain most of the time, or at least keep it undercontrol and magagable. hope you are doing well yourself.

david

David,
When my dad was sick from prostate cancer (he had an aggressive form of it), his bones became weak, including his spine. His doctors were pretty concerned about this. I don't know if it was caused from the hormone treatment or not, but please be sure to have your bone strength checked, the last thing you want on top of everything else, is a broken spine.

David, I logged in today for the first time in months, specifically to see how you were doing. I'm glad you have continued your update thread, but I'm sorry you've continued to have a difficult row to hoe. Certainly, more difficult than most of us have had to endure. You remain in my thoughts and prayers, as are all my brothers on this thread. Keep the faith, do the work, and put it all in the Lord's very large hands.

David: I very sorry for all the problems you are facing. I offer my thoughts and prayers towards you and wish you the very best of luck. Just hang in there, I'm sure better days are ahead.

Gee David.

Most of us (all of us) talk about having a journey, but I can't quite think of the right description, adjectives, analogies etc for your version of the journey.
You also seen to have been looked after by docs from the two ends of the spectrum, when it comes to those that do/can listen and those that don't.

So I hope the PT etc can recharge your batteries.

Alf

David,

I hope your rehab sessions are of benefit to you, and the term, "Use it or lose it", comes to mind. So look forward to reading about many more and your strength building as you continue.

My Father In Law, who had a stroke 8 years ago, is in a nursing home. He was able to get around with a zimmer frame when he first went in. Because the nurses are not allowed to lift him, due to "Health and Safety" laws, is hoisted everywhere, he has lost all his muscle strength and would now not be able to lift himself at all.

So David, I'm sure I don't need to say, "Squeeze that insurance company all you can"!!

Chris

Good to see your team working for you, as always.

Chris

David,

I'm not going to extend any sympathy to you. You have jogged through hell and your running shoes are still handling the track. Don't let these obstacles screw up your lifeplan. Sorry for going Tony Robbins on you. I have a strong feeling that you will be visiting this room for many years in lesser pain. Good fortune my friend.

Jim

Friday Update:

Seen some improvement since my dr. switch my Fentanyl patches from 72 hour swaps to 48 hours. The problem was, that by the 3rd day, the patch was so weak or depleted, that I was having a rough time every 3 days. Only have swapped out twice so far, but it's nice not having that "bad" day.

I can't ever figure out drug costs. When I was on the 72 hour cycle, that meant getting 10 patches per month (10x3 days), my cost after insurance was $45, or $3 per patch (nothing to complaiin about). But when I filled the new prescription for the 48 hour cycle, that meant 15 patches x 2 days, so I assumed it might cost as much as $60, since I was getting 50% more product. But in the end, the price dropped to $41 for 15. Doesn't make sense to me how they figure the prices, but not complaining.

It's taken several months of fine tuning the pain meds with my doctor, but feel we are getting somewhere. I know that drugs alone are not going to eliminate 100% of the pain, 100% of the time, that is not the goal. But getting it under control without having any "bad" days is getting closer and closer.

David

thanks, over. at this point and after dealing with so much pain for so long, any small improvements are noticed and appreciated by this guy.