Kind of at a crossroads, and frustrated

Very frustrated still at this juncture.  I was a very willing and compliant patient working through all the neurological tests.  They began in mid-December and ended just a few weeks ago.  This neurologist came highly rated via my oncologist  (no, they are not remotely in the same practice).  I had doubts from the start about how things would end up, my doctor said to clear my mind, let's start at square one, and give this guy a shot.

So as you know I did.  Endless tests, including 3 rounds of horrible electrical tests, 5 MRI's, constant exotic blood work, physical exams.  The neurologist assured me that he wouldn't give up until he got an answer.  I believed him at the time.

However, he has given up.  Ran out of tricks in his bag.  Wasn't willing in the end to even label parts of the problem as either CRPS or Fibro.  At least that would have been something to work with.  So I am truly back where I started at, with no hope of an answer, let alone a solution.

As a brief update.  My hips and legs still give out constantly, with any kind of steady walking or standing or combination of either.  I can't walk laps at PT without using a rolling walker, or their sake of mind, and for my safety.  And when I say laps, we are talking about 3 laps, each one only 1/10th of a mile.

Fatigue makes matters worse, that's a fact.  As I become increasingly tired during the day, the problem with my legs/hips is more pronounced.  In dealing with Severe Chronic Fatigue for over 14 years now, nothing helps, and its only getting worse, not better.  I still have a useful time period of 4-5 hours per day ,starting from when I wake up.  Then my body is like a fast discharging battery, whether I do anything physical or not.  Some times, I am shot within 3 hours, sometimes, I can make 6 hours, but not often.  Once my body is spent for the day, that's it, its over with for the day.

Finding sleep harder and harder, especially quality sleep.  My average is perhaps 4 hours per night, sometimes 5, rarely 6.  But sleep to me, means being awake until at least 3-4 AM before I can even get to sleep.  And that's with all available meds at work.  But sleep is always broken, its rare that I am ever sleeping more than 30-45 minutes at the time without waking up.  So since I am rarely in a deep sleep mode, most of my sleep involves endless night mares, some quite violent in nature.  So it feels like I am never really getting good sleep.

And naps are becoming harder.  Yes, I lay down every afternoon (usually 330-430 pm) for 1-2 hours, I use to get some sleep with those, but lately, most times I am laying down, but no sleep, so it accomplishes little but getting me off my feet.

So the doctors and specialists are telling the following:  No diagnosable neurological problems, no serous bone problems,  no internal digestive problems, clean brain scan (2 of them back to back), and they can give me a long list of  things that I don't have.  But other than the generic statement of me having severe radiation damage, no other clue or diagnosis.

Don't know what to do at this point.  Tired of doctors, tests, scans, that all lead to no where.  Yet living in this body of severe pain and fatigue around the clock is equally old.  Don't know what else to try.  Doctors simply say I have to live like this, and  tough it out, and that's all there is to it.  They can't fix what they can't find or see in a scan, so I am s.o.l.  That was the conclusion of the neurologist in particular.

You would think in our modern age and times, there would be better methods and better means to get a better answer to what ails me.

Already getting close to the 4 year mark of severe chronic pain, will be turning 62 in July, even the thought of having to do another 4 years like this is unbearable to my mind.  I just hurt too much, much of the time, and I am finding it harder and harder to accomplish anything useful or fun, without it costing me days and days of extra pain.

If its this bad now, what do I look forward to when the mets finally show up?  Most men with PC, advanced or not, don't deal with this level of pain until nearly the end of their journey (thank goodness), then they can be loaded up with morphine to get through to the end.  Fun?  No.  Merciful, yes.

If I let the VA take over my pain management, they already said, no more Fentanyl patches, they would put me on oral Morphine from day one.  The other half of me doesn't want to be so doped up that I can't think straight, or be able to drive, etc.

My situation seems hopeless to me at times, but not saying I have given up.  Just frustrated, and things continue to get worse and worse as each new month passes.

Going to stop before this turns into a pointless rant.  Going to some higher center of learning, etc, sounds nice and easy, but there's financial and logistical complications with that.  And I have no inner assurance that another doctor or group of doctors is going to come up with anything new.  Hate to go through all that, just to be back at square one all over again, don't think my head could take it again.

See my oncologist next month, but not expecting anything exciting from that visit, because he knows now, that we struck out with the neurologist.  Seeing another one wouldn't prove anything, but run up even more tests and scans that have already been ran.

David

 

David,
Sorry to read about this. I know what your going through in regards to the fatigue. My wife has chronic fatigue, there are days where she wakes up after 9 hours of sleep and is still extremely tired. She's had a mountain of tests done. In fact she just finished some expensive blood test. Nothing in particular was found. Chronic fatigue is difficult if not impossible to treat. Fortunately she has good days where she isn't so tired and functions almost normal.

Regarding your pain, what is your PSA? You asked what to do when mets finally show up. Is it possible mets have already showed up but can't be imaged at this point? Many of your symptoms mimic when my dad had advanced PCa...Constantly falling, nerve issues on the lower half of his body and lots of pain. Would HT, possibly short term be worth trying?

Sorry to read about all the trials and frustrations you're going through.

Hi David,
So sorry you are down today, good that HW is here for you. Your narrative about the physical challenges and sleep issues helped me understand better what that was like for Mark. He never talked about how hard it was, but I knew he struggled every day.
Keeping you and Peg in my prayers.
Par

David, the title of this thread is "kind of at a crossroads..." which implies a decision is at hand. Sounds like you're grappling with a choice. Can you share with us the choices you're considering; perhaps we can help.

On the surface the choices seem simple enough: stay the course or take a different route. Of course, nothing in life is ever this simple and there are always consequences and ramifications to just about every decision we make in life. I'm concerned that you're worried about what pain will be like once the mets are visible. Of all the conditions and ailments you have to deal with, the PCa seems to be the only one that actually has a treatment option. Why "wait" for the pain from mets when there's a chance you could do something about it now? As to the effect treatment could have on your QOL, there's simply no way to know what they may be. Sure, you've read here and elsewhere about the SEs inherent in HT but, as you've said numerous times, your situation is different and your response to medications is different than most. Perhaps this is the one time your uniqueness will work in your favor? You won't know til you try.

As to going to a learning center or center of excellence, this too boils down to choosing how you wish to invest your time, energy, and money. It's also another situation where you simply won't know what's involved financially or physically until and if you start the process. It might actually be easier than you think since most of your scans are recent enough that another doctor may just be willing to work with them to try and come up with an answer. Again, you won't know til you try.

To continue saying that things are not possible for you smacks of defeatism with a sprinkling of martyrdom...not a judgment, just an observation. As your title implies, you are indeed at a crossroads, and are faced with a choice as to whether you stay the course or decide to try a different approach. All along every doctor has assumed neurological problems caused by radiation or physical trauma. Perhaps they're looking in the wrong place...perhaps a fresh set of eyes and a new approach will yield some answers for you. You'll never know until you ask the questions.

Too much to answer easily. Will take a shot at some of it.

Yes, been through the whole sleep clinic thing years ago, was a total waste of time and money, they concluded that I shouldn't be having sleep problems! I do come from a long history of insomniacs, which doesn't help. And the fact that I have been on Ambien for over 14 years. It still has the ability to finally knock me out, but no longer has the ability to keep me asleep. To be expected after being on a sleeping pill for so long. Have tried natural sleeping aids, but none of them work. My brain expects the Ambien.

No, no evidence of mets. I agree, much of my pain mocks accounts I read of men with serious bone mets, especially when I have deep, gnawing, burning pain in my legs. But between bone scans, MRI's, CAT scans, and a PET scan, nothing shows up. Only thing I haven't had is the C11 scan. Have talked about it with my doctor, but he doesn't seem real keen, because he doesn't believe anything is going on at this point. Still feels I am dealing with multiple micro-mets, that just aren't big enough to be spotted.

My wife's work schedule has kept her out of all the Easter related services, she works 11-7, or even later. I went to the Holy Thursday service, almost didn't make it through it, lasted over 2 hours, and again a lot of extra standing and walking. Near the end, I felt close to collapsing, during an extended standing part where there wasn't any more seats. Finally, someone spotted me teetering on my cane, and got a chair for me. Today's Good Friday Mass will be at least 2 hours, not sure I can make it, as it starts at 3 PM, prime time for me to need to take a nap. Hate to miss it, but not sure I can handle another long service

Dreamer, still so sorry about your husband. My wife being a nurse, she expects a full account of me, but she works with the ill and the terminal every day, no way I could keep my feelings about my condition from her, wish I could, but she would know regardless.

My oncologist is totally convinced, any form of advanced treatment, i.e. HT, regardless of "flavor", would only deteriorate my already greatly diminished QOL. He's been dealing with my issues for over 3 years now, and I trust his judgment. Plus he's not convinced it would prove a lot at this point, he's just not for early HT use.

There's no martyrdom in my feelings or posts. Sometimes, a person simply has to suffer without a cure or a fix. I am not alone with this situation. if I were drugged up enough to kill all the pain, I would have to be in a hospital bed with an IV of morphine going all the time. That's not going to happen, nor is that what I want. I have learned to adapt over the past 4 years, to suck up a certain amount of the daily pain that I have to endure. It's not easy. I have the normal constant pain in my hips and legs -always there, then I have "moving" pains, that seem to trade places on a daily basis, i.e., it may hit my thighs, or ankles, or feet, shoulders, arms, different places in my spine. Like every day, its a different location. Then of course, I still have the bladder spasms. 1-3 dozen a day, above and beyond all the other pain. And after more than 5 years and literally thousands of them, one never gets use to them. Each one is a terrifying moment or so of sheer pain and panic, until they pass. And for those, there is no hope of improvement.

Not so much at a point of decision or choice, despite the thread title. More like, I feel I have ran the gambit of what is available to me. Perhaps its time for me to stop venting here at HW, it doesn't help others here, because just like in real life, there is nothing anyone can really do to help me. If I wasn't a person of strong faith, and a devoted family man, the solution would be really, really easy. But that's not an option for me, but can't say I don't give it a glancing thought from time to time.

D.

Appreciate the support, care, and prayers of many here. Least I never feel alone in my travail.

David, you are a tough old bird and I simply admire your endurance and positive attitude considering all you have been through. Went to rosary and mass last Friday and asked Blessed Mother to give you relief and peace. HANG IN THERE, you are an inspiration. The Old Sailor

My oncologist is totally convinced, any form of advanced treatment, i.e. HT, regardless of "flavor", would only deteriorate my already greatly diminished QOL.

what QOL is he trying to protect? is this the same guy that doesn't really care what your PSA is? maybe it's time to see a different doctor or a team of doctors.

we all know what the problem is David and it's painful to watch you suffer especially when you react negatively to advice. what are you willing to do about it? seems to me the choices are try something different or give up.

ed

samster, your words are appreciated

sailor, my old friend, appreciate Her Intervention as well. My faith keeps me going when my mind and body isn't cooperating

phenom, will check on NIH

Lynn, thanks also. Have tried the alternatives to Ambien over the years, but nothing works as well as it. There are other meds, that would knock me out for 10-14 hours at a time, but didn't like how groggy it made me feel, even a day later. Ambien is very predictable with me, within 10-15 minutes, finally, I am knocked out cold. Being a super light sleeper doesn't help my sleep issues. I need total darkness, total quiet, etc. Sometimes, I wake up simply to pain in the middle of the night, especially my legs and knees hurting badly. On those nights, its all but impossible for me to sleep well, let alone at length.

d.

David:

I still have this gnawing feeling that your known elephant in the room, PC, might be responsible for part of your issues, maybe a good part.

You ignore getting PSA tests, but I would assume it is now triple digits.

I don't know why you don't give HT a shot. At least you can always stop it.

You keep saying your doctor does not want to do HT nor PSA tests. Maybe it's time to revisit that in a serious way.

I understand your SE concerns. It is indeed a valid concern. But your current QOL is horrible and maybe HT will help.

You have certainly been a compliant patient and you have done the right thing in trying to solve your issues. It hasn't worked.

Maybe the HT will.

David, I am really so sorry you have to go through this agony.

Mel

 

Dave/Purg,
My friend we or at least I am frustrated by your lack of progress and your poor quality of life. As many have mentioned and have been rebuffed, you have 1 gun in your arsenal that you haven't used yet and that is ADT. It might help and it might not but not to try it is "wrong" at this point. You don't want to hear it and I don't want to hear how your doctor agrees with you! Lock and load and go for broke, soldier. All the best to you!
Bill

Post Edited (gunfighter) : 4/18/2014 8:53:16 PM (GMT-6)

P.S. Plus the point of the thread is the frustration on the pain and disability front, not the PC front. Two separate battles entirely in my life. On the PC side, I am more than willing to keep buying time the way I am, under the care of a good oncologist. When its time to do something, and that day will come, my doctor and I both know that, then all options will be on the table, and I will do as he advises at that point. But I have said this same thing for years, and the answer is still the same.

David, I was just wondering if you're talking to the "chronic pain" people here on HW. It would eliminate the PCa bias. I admire your courage and wish all the best for you!

Cheers, Doug

David:

You said:

>>>>>>>>>>>>>>>>>>>>>>

 And not one person on the HW HT squad has ever given definitive reasons why it might help my QOL situation, not even once.
>>>>>>>>>>>>>>>>>>>>>>>>>>

"Squad"?????

I've given you a reason:

IF some of your pain is being caused by PC, then the HT will arrest the pain, assuming it arrests the cancer. Obviously, no guarantee whatsoever.

Another reason: you fear the SE of HT but seem unconcerned about the horrors of dealing with end-stage PC, so you let that go. This is very understandable, as you have so many squeaky wheels demanding your every-day attention.

You are correct that I have been on this kick for a few years, actually even before I started HT, which I resisted until my PSA shot above 17. This is not a "misery loves company" kick at all.

I am surprised that all your doctors have advocated not checking your PSA and not doing HT. There are hundreds (thousands?) of posters on HW and I cannot think of a single one with a large rising PSA after primary/secondary tx. who have been given such advice. On the other hand, they have not had your issues.

You are correct that you should listen to your doctors. I am just suggesting that maybe it is time to revisit that subject.

Another thought would be to visit Mayo. I know that would be a great burden. But I wonder if their C-11 Choline Scan would show something. I have been extremely impressed with Dr. Kwon at Mayo (I've seen him speak and when my HT fails Dr. Lam has indicated that I should consider getting a C-11 scan there).

These are just suggestions.

Mel