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Posted 4/23/2012 3:37 AM (GMT 0)
Ted, I do remember you. Sorry that your own journey hasn't fared all that well for you. Each one is so uniquely different. You haven't had an easy time your self. Reading through your stats, you have seen the full gambit pretty much. My doubling time is less than 11 weeks according to my doctor, or around there. Sometimes, a cancer can have a mind and course of its own.

My wife and I are hoping to go on a RV trip to Black Mtn KOA (Asheville) sometime in May, perhaps we could still hook up one day.

As far as retiring, I didn't want to, but was forced to be on disability. I miss being in the midst of my former busy business life. I do limited consulting work, key word is limited. I would much rather be well and working.

My best to you, and appreciate your writing and comments.

David
Posted 4/23/2012 3:42 AM (GMT 0)
Update:

Been on the new med only 2 nights, not liking it some far. Woke up both mornings in a very agitated stated, almost wanting to pick a fight with anyone. So totally not me. Both days, have had bouts of severe nausea, stomach cramps, and diarehea, also not the norm for me. Going to tough it out a couple more days, then get word to my doctor.

This med has a lot of known side effects, some of them bad. He warned me about the most common of them, which include some of the above.

Had to do some thinking, but sometime in the past, my GP had me on this same med, for a neurological reason, almost had forgotten, and after about a week, had to stop taking it because of the strong side effects. I will see how I feel in a few days.

As far as pain relief, no difference with this med, though its probably been too short a time. The dose is very low, couldn't imagine being on this at a full dose. While I have grown tolerent to the long term pain meds I am on, by nature, I am pretty sensitive to a lot of meds, even some OTC meds.

David
Posted 4/23/2012 4:16 AM (GMT 0)
David,
I appreciate the response.

At this time we are in NM on a family medical emergency visit. I hope to return to NC sometime in May, so maybe my wife and I could hook up with you and your wife in Ashville, we will see.

Sorry to hear that the new pain medicine is causing you so much discomfort.

BTW, I updated my profile to include the latest progress.

Ted.
Posted 4/23/2012 6:38 AM (GMT 0)
David, been away for a few days, sorry to see the outcome of the MRI, but if it is what they think, because it can be seen, there is hope that it can be attacked with some form of treatment, I feel for you, as I too have L4 5 6 S1 fused, and until they did the work on me I could not walk for 3 months due to the pain. Hopefully your medical team has a plan of attack.

as always, all the very best to you and your family.

regards Mal.
Posted 4/23/2012 10:45 AM (GMT 0)
Thank for being a beacon of light, knowledge and compassion for all of us here. You are so unselfish with your time and your great comments.

 

Hello David ~  These comments are so true about our feelings towrds you!  I am so sorry to hear this latest news.   The side effects seem just awful from that new medication.   Sorry also about the results of the MRI.  Let's hope more answers are forth coming.  I loved what you wrote about your wife.   It is obvious this is a very special relationship.   May God continue to bless you with peace and love in your life!

 

Ron is still at the same level of pain.  His main problem has been finding a pain killer he's not allergic to because of diverticulosis.  He takes the pain meds to kill the pain, but they cause stomach reactions and pain.  There has to be an answer to this.  I imagine your doctor finds this to be challenging as he prescribes your meds.

Sheldon you certainly have a way with words!  So eloquent and thought provoking!

Devastated, I am so sorry you are on this journey of pain.  Thoughts and prayers for you and David - and all who are suffering.

MsWorryWart, I laughed at what you wrote about eBay.  I don't even need any medication to go on a shopping spree for toys.

Take care everyone,

Aimzee

Posted 4/23/2012 12:15 PM (GMT 0)
David,

Draw a deep breath and reaffirm your pledge to whip this beast. The onset of mets (if confirmed) is just another brick in the wall. You may now finally have a target in your crosshairs and new ammunition is surfacing every day. Pain is your most immediate issue and perhaps this discovery may help devise a plan to better address it. We will be watching with you.

Jim
Posted 4/23/2012 1:01 PM (GMT 0)
David:

Good luck. As I've been saying, if they can identify something on the scans that they can treat, maybe they can then treat the source of the pain, with good results.

Good luck-- you deserve a break!

Mel

Posted 4/23/2012 2:16 PM (GMT 0)
Ted - thanks, that would be nice to hook up if possible. Been itching to get back to the big Antique Barn in Biltmore Village. So to see your PSA creep, to me, looks like you are heading toward SRT. You are almost 5 years out, so you had a pretty good run so far. My surgery failed within the first 9 months, so I didn't get much of a break there.

Mal - you always know the right thing to say, thanks my friend

Aimzee. Thanks. I know Ron is having it hard, and it is difficult sometimes for even the best of drs to find the right meds or combination of meds. It's a trade off with severe chronic pain - to have powerful enough meds for the pain, without making the side effects to severe. This new drug isn't looking good for me, though the jury is out. If it is stilling do what it is 2 days from now - going to stop taking it. And see what my dr. thinks next. The drug works well for many people, but dr spent a lot of time being concerned over the worse of the side effects.
Hope your Ron gets the right thing for him.

Jim, thanks for the words. No one in their right mind would want mets, but in a weird way, found some comfort that at least something has shown up on a scan, instead of only dealing with things invisible to the eye

Mel - that's the thinking right now. Might be something there now to work with, or it might force an advanced treatment, sooner rather than later. As a team, my dr and I are ready to take any action needed when he feels the timing is right. Other than that, I still operate my life on a one day at the time basis. I never dwell or fret on the future, or play the what-if game. Good way to drive one's self crazy. THat's why I am not a worrier. Each day speaks for itself, and each day is its own victory.

david
Posted 4/23/2012 4:47 PM (GMT 0)
David:

While I cannot  fathom how you can approach these events with total equanimity, I also do not play the what-if game at all. That is not part of my psyche.

In fact, I know I made the right choice of tx. so far despite the fact that they haven't worked. I consulted the best, did a lot of research, agonized over making some decisions, but never looked back. That is negative energy.

So is anxiety, but my next PSA is Wednesday (I'll get the results on Friday) and yes I definitely have anxiety especially in the light of recent results. I'm hoping the avodart shows continued signs of being helpful.

Thanks for keeping us informed.

Is it possible that you have a herniated disk, period?

I have had that more than once and the back pain was pretty bad (and the leg pain was worse). Fortunately for me it did resolve without requiring surgery.

Mel

Posted 4/23/2012 5:15 PM (GMT 0)

compiler said...
David:

While I cannot fathom how you can approach these events with total equanimity, I also do not play the what-if game at all. That is not part of my psyche.

In fact, I know I made the right choice of tx. so far despite the fact that they haven't worked. I consulted the best, did a lot of research, agonized over making some decisions, but never looked back. That is negative energy.

Mel

I don't believe it is negative energy to look back and examine our past decisions, about treatment for PCa, or about any other part of our lives for that matter. Life is a continual learning experience and examining carefully one's past decisions is important because it may give guidance as to how to proceed, ie. how to avoid similar mistakes in the future. Looking back is vitally important in my opinion because it may well reveal flaws in the logic and faulty rationale that led to mistakes, and dealing with those decisions is a necessary path to move on. Awareness of my mistakes in life is a strong motivator for me to avoid similar behavior in the future.

San Carlos
Posted 4/23/2012 8:10 PM (GMT 0)
San Carlos:

My comments are confined to my medical decisions only.

When I was a school adminsitrator, we constantly went back over our decisions and analyzed them in order to do a better job. But in that realm, many situations would recur every year.

In life, we have many opportunities for do-overs.

With PC, I did my agonizing in arriving at decisions. I am very confident I made the right decisions. Unfortunately, there will be more decisions to be made regarding this beast, probably for the rest of my life!

Mel

 

Posted 4/23/2012 11:11 PM (GMT 0)
mel, no chance of the herniated disk. It's definitely not of that nature. Doesn't seem to be of degnerative nature either, which could be disturbing, as this spot did not exist in July of last year, nor was I experiencing any back pain until about 3-4 months ago. Still hoping to be avoidng the "mets" game, but it can only be a limited explanation. Hopefully, this awaited 2nd opinion will shed some light, or will lead to another type of test to termine its type.

I have no problem with the fact that most men here experience some degree of PSA anxiety.  I would say that would be a normal reaction to the situation.  But when I say I don't, not trying to be a tough guy, or anything else.  I honestly don't have any anxiety about my entire PC situation.  Some would be going nuts in my situation, pretty sure of that, based on how I see others react to their own situation.  Just was never a worrier at any point in my life, not my nature.  Either you can fix something, or you can't.  With all my years in the financial world, I was the same way.  I was paid to make tough, rapid, and often expensive decision with little or no time to dwell upon them.  And I was never a "blame person", I was, and still am, a solution person.  As San Carlos states below in his response to you, there is great value from analyisng one's mistakes.  That's not the same thing as second guessing a decision.  I don't think I can ever remember doing that with anything major in my life, whether it was personal, business or medical.

david

Post Edited (Purgatory) : 4/23/2012 5:17:21 PM (GMT-6)

Posted 4/23/2012 11:19 PM (GMT 0)
San Carlos, always good to hear from you. I thought that was a very eloquent tretise on Mistakes, and the value of studying them. I would have to say I agree with you whole heartedly on this subject.

Learning from one's mistakes, is a great step of progess to not repeating and eliminating similar mistakes in the future.

david

Post Edited (Purgatory) : 4/23/2012 8:36:01 PM (GMT-6)

Posted 4/24/2012 12:22 AM (GMT 0)
David,

Thanks for your compliment. I have made a lot of mistakes to learn from!!

Hope you get a handle soon on the bulge on your lower spine. Finding out what it really is could turn out to be a blessing.

San Carlos
Posted 4/24/2012 12:44 AM (GMT 0)
David, over a year ago,   my Mayo Onco prescribed gabapentin for hot flushes and it made me dizzy, irritable and just generally felt bad. I usually have a tolerance for almost all meds but this one was definitely very different so I stopped using it.

I can't understand all the fuss over decisions you have made.  It's your life and you know what is best for you.  I know folks are trying to be helpful but in the final analysis, you must live with your decisions, as it should be. 

I will keep you in my thoughts and prayers, asking that you be at peace.  I totally support you and wish you the very best.

The Old Sailor

Posted 4/24/2012 2:41 AM (GMT 0)
san carlos - i think so to, at least it was something that can be seen. the trouble with all the severe nerve damage, it doesnt show up in scans per say.

old sailor - good to hear from you, mate. i am certain i had the same issues with gabepentin several years ago. on the 4th round, and still making me feel like utter crap, and while it may be too soon, hasn't remotely helped me in any way with the pain issues. i don't like this feeling for being on edge, irratable for no reason, feeling hostile, etc. and i could do without all the nausea, stomach cramps and the rest of it. one more day, and if no improvement, going to call it quits on that and contact my oncologist.

on the other subject, sometimes folks get over zealous, even with good intentions. but like all of us here, our ulitmate decisions are personal and subjective, and no matter how much info we provide here, its not the full details that our doctors have privy to, and while i listen to all opinions here, and glean good info and data at times, my ultimate medical decisions are based on what my doctors come up with, because to me, they are the experts.

hope you are still doing well in your travels. haven't seen your stats in a good while, so having a hard time remembering you situation. hope its good.

david in sc
Posted 4/25/2012 4:30 AM (GMT 0)
Update Early Wednesday Morning:

After trying the new med for 5 days, I am calling it quits. This is not going to work for me. Each day on it, has left me in a very agitated state of mind, feeling hostilities and depression. Then each day, having to deal with some pretty serious nausea, some dizzyness, stomach cramps and diareha. The worse part, so far, it has had zero effect on the chronic pain. Even sitting here typing this, feeling a wave of dizzyness overcoming me.

Going to call or e-mail my doctor in the morning, and let him know, this med isn't going to work out for me. Hoping that he may have that second opinion on the positive spot on the MRI scans. I want to know, and not want to know at the same time.

david
Posted 4/25/2012 4:39 AM (GMT 0)
Hi David,

I had hoped the new med would work well for you. You deserve a break.

Hang in there,
Kathy
Posted 4/25/2012 5:05 AM (GMT 0)
Thanks, Kathy. My dr. needs to know, he's on standby to make adjustments. Had enough of this drug.
Posted 4/25/2012 6:03 AM (GMT 0)
Sorry David that this drug has not worked for you in terms of side effects but unless you tried it you would not have known.

Wish you all the best with the spot on the spine, I certainly hope that it is something very treatable and that your daily pain goes away.

All the best,
An
Posted 4/25/2012 11:48 AM (GMT 0)
David,

I will pray today that your doctors can get this pain under control.

You said, "Hoping that he may have that second opinion on the positive spot on the MRI scans. I want to know, and not want to know at the same time."

I can relate to that every time I get new scans.

Hang in there and keep us posted.

JL
Posted 4/25/2012 3:29 PM (GMT 0)
David, heres a quick update on my stats:

     RRP - 8/09  (Nadir of 0.05 in 11/09)

     SRT - 4-6 10 (PSA 0.2)

     PSA 10/10 - 1.0

     ADT (lupron) 11/10

     PSA 3/11 - <.10

     BONE SCAN (3/11) - 1 MET

     PSA 7/11 -  0.11

     PSA 11/11 - 0.14 (added Denosumab to prevent bone loss)

     BONE SCAN (3/12) no met  (???)

     PSA  3/12 - 0.19  (Onco says no problems??)

     Next PSA 6/12

Hot flushes a couple times a day but tolerable.  Libido (what is that!) At age 70, should I care?

Otherwise doing fine, still working a couple days a week.

Take care and keep pressing on.   The Old Sailor  

    

Posted 4/25/2012 3:33 PM (GMT 0)
Old Sailor...yes, you should care...70 isn't old you know. I hope my husband doesn't see your post, trying to get him associated with Trimix. He turns 70 in July. lol

Kathy
Posted 4/25/2012 3:35 PM (GMT 0)

Purgatory said...

After trying the new med for 5 days, I am calling it quits. This is not going to work for me. Each day on it, has left me in a very agitated state of mind, feeling hostilities and depression. Then each day, having to deal with some pretty serious nausea, some dizzyness, stomach cramps and diareha. The worse part, so far, it has had zero effect on the chronic pain. Even sitting here typing this, feeling a wave of dizzyness overcoming me.

Going to call or e-mail my doctor in the morning, and let him know, this med isn't going to work out for me. Hoping that he may have that second opinion on the positive spot on the MRI scans. I want to know, and not want to know at the same time.

david

David,

Well, that is a bummer, but at least you have an easy decision.With all of the nasty side effects and zero effect on the pain the path is clear.

San Carlos
Posted 4/25/2012 8:05 PM (GMT 0)
an - thanks again. with meds, all you can do is try something. dizzyness today was severe at times.

old sailor - thanks for the stats. you are definitely holding you own right now, happy to see that

san carlos, i think even my dr knew this med might be problematic for me, so not expecting him to be surprised. he also knows i am very cautious with meds, and he takes that into consideration when prescribing things with me, and in the dosing of meds.

still waiting for the 2nd opinion of the "spot" on my spine, hoping to have an answer before the end of the week, then at least it will be something to go on. we should really find a way to have lunch together sometime soon. if you want to, let me know what would work for you. wife is out of town from saturday through next wednesday, so going to have plenty of time on my hands.

david
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