Kind of at a crossroads, and frustrated

And based on what you wrote, Sephie, I am through with this thread. Moderators can lock if they wish.

And final remark to Mel, if PC was the suspect of the pain, then your premise could be right, but not a single doctor agrees to that. The pain/fatigue issues are the direct result of damages from various PC treatments and operations. Two entirely separate issues.

And we have one poster here, who until a recent C-11 scan showed a different story, was on the exact same path with a fast rising double-digit post surgery, post radiation path. And I have mentioned, my doctor is strongly considering a C-11 the next time I get a full body scan, probably sometime this year, to be on the safe side.

Over and out. Thanks to all for your great support and suggestions.

D.

Stephie, you were right when you said that others must agree with you on these points. It is extremely distressing to read that there is nothing that can be done and then a few days later to say that there is a crossroads that must be addressed. People are invested in helping and offering solutions to untenable claims of distress.
After watching my younger sister and husband die of cancer, I can assure Purgatory, that when he says:

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.

he has NO idea of what pain is involved. People with metastasis to the bone do not magically die while zoned out on narcotics. This insults ever man here who is dealing with mets. If he is able to go about shopping and picnicing, he does not know what pain is. If he is able to read this and reply, he does not know what pain is. I have seen the pain and tried to relieve it. I have administered morphine shots. Most people who die of advanced cancer do not go painlessly into that good night. I am offended.
I just do not understand doctors who are dealing with a cancer patient and do not check PSA-any of them. How is that possible? A cancer patient has problems and nobody checks PSA levels? And they all agree? Velocity is the problem but nobody checks velocity?
There are men and women here with advanced issues and they receive scant attention while everyone ponders the drama.

Good post Beejane....I can assure you Bone mets is no fun and Ive only had it for a year.....While I can still walk around shopping.....Im very limited.....I have to go find a bench to sit down after about 30 minutes of standing up as the pain is just too much.....while Oxycodone helps...it doesn't take away all the pain....only makes it a little more bearable.

I personnaly don't know if HT would help david or not but it sure couldn't hurt...I mean how can you say you don't want to mess up your QOL when its so bad in the first place with all the pain. My pain was decreased by about 80% after I started on HT...

 

David,

    This might sound dumb but a lot of people with chronic situations are using medical THC for those types of problems. Some of the reading I've done states there can be a great easing of the problems you've talked about and perhaps aid in your state of mind. Just a suggestion to look into. There is a reason they have legalized medical THC in whatever form. Hope you feel better soon and God be with you. Al

Just happened to be logged out of HW, rare for me, sometimes my Windows 8 logs me out of all sites with a password.

And gee, what a surprise, Beejanes. Over the years, the only time I have ever seen you post to me, is either to insult me, or critiszie me, or make some other foul remark in my direction. You have been on my ignore so long I forgot about you till I saw this evening what you wrote.

You know nothing what you speak about. How can you say I don't know pain?????? What presumption on your part. And for the record, over the past 40 years, I have been on many a death bed scene, offering comfort to those dying of any number of horrible cancer deaths, often being the person holding the hand or praying for the person as they leave this world. I have seen the hideous and horrible and prolonged painful deaths, up close and personal, and seen people out of their mind in pain even on heavy doses of morphine. I know a lot about pain. Who are you to say what I feel or don't feel? Do me a favor, since you obviously have always had a distaste for me, don't post on my threads. I normally wouldn't see what you write, and I see you haven't changed.

So because I go shopping and on picnics makes me not be a person in severe pain???? Again, who are you to assume what I feel and don't feel. My oncologist already has stated that I am dealing, and have been dealing with more severe pain than many men that he works with that are in end stages. And it frustrates him too, that he can't control my pain better than he has already.

I struggle to run errands, to shop, to go to church, to even drive my car at times. I don't have to justify my life to you, of all people. Don't know where all your hatred is coming from, all this animosity towards me, I never did you any wrong, ever. So I ask you, leave me alone.  Every little thing I do, takes so much mind over matter on my part to accomplish.  I stubbornly force myself to do things, lift things, whatever, that I shouldn't be doing, because I can't just lay around and suffer and do nothing.  SO I push, push, and keep pushing myself, then have to pay for it days after.  Even my once a week oncology rehab is a real struggle.  Perhaps I will give you the name and number of my therapist, she has worked with me for over 3 years and knows some days, that even simple walking gives me so much pain.  But I don't have to justify my struggles, pains, or life to you or anyone else, especially to someone as hateful as you are towards me.
--------------------------

Mel, I purposely didn't say Sonny's name out of respect to him, but you had to spell it out. I was trying to use some discretion, you didn't. Our cases were very similar. And its not like I am not being tested for PSA. Already told you over several threads, that a C11 Acetate PET is next in my future, so why keep harping that nothing is being done? WW is perfectly appropriate under the circumstances, its been buying me some time while we try to fight my other issues and problems, so why do you have an issue with that?? My doctor feels once or twice a year is sufficient right now. You do not know that it is triple digit, you are assuming. It may have gone down, who knows, it may have held steady. My doctor said he has had men that reached 100 or so, and then it does hold steady.  He said my PSA number, whether it be 20 or 100 or ?, isn't going to change his opinion to start me on an advance treatment or not, he's looking and holding off for any evidence of mets.  And 3 years later, he's still more inclined in my case to try chemo first, not HT.  Said in cases like mine, the chemo has shown a better job of shocking the cancer, as versed to slowing it down with HT.  Since his specialty is advanced PC, why do you constantly question his judgment?  Do you know more than a doctor?

And if I, or any other OP wants a thread of their own locked, I sure don't need your permission or ok.  You keep feeding the fire with me, so I can only assume you get some kick out of pushing my buttons.  But I know how to take care of that in the future.  Tried to be the nice guy once again, but I can see that was another mistake
------------------------------------------
Bill/Gun

I plan to see the VA in Columbia late this month. To see the head of both their oncology department and their head of neurology, and get a whole new view of what's going on. I am seeing their oncology guy, without the knowledge of my doctor, just to get a new take. If they want to do a PSA test of their own, fine by me, if not, fine by me. I will also ask if they have any way to have a C11 Pet scan done. Meanwhile, all my extensive dental work by the VA needs to be taken care of, before that becomes a bigger problem
----

thanks susan, sometimes, there are patients that are difficult to have their pain controlled, meds or no meds.

al, thanks also, unfortunately, SC is a state that will never agree to medical THC use or MM, just not going to happen. If it were available, not sure how I would feel about it, have mixed opinions, whether it be legal or not, had some bad episode in my distant youth, that I would rather not repeat. But if it were legal here, I would at least investigate and consider it.

d.

Post Edited (Purgatory) : 4/19/2014 7:27:09 PM (GMT-6)

Dave, I have been suffering from insomnia for years. Have only just been diagnosed with PC and am currently in AS.

But I am writing about your insomnia. I was taking OTC sleep aids from 1995 to 2004 when they no longer worked. I then started taking ambien. I found it would put me to sleep but not let me sleep through the night. My investigation of OTC sleep aids showed that there are basically two in most OTC. One is better at putting you to sleep and one is better at keeping you sleeping. The one that helps you sleep longer is Doxylamine succinate. It is the agent in Unisom and is often marketed under whatever brand your drug store carries. So I take both the Ambien and the Doxylamine succinate. Although it does not work every night I can sleep 6 plus hours most nights.

Good luck in your battle.

shinytop,

thank you. that was great advice, and I did know what anything about what you suggested. I assure you I will check that out asap. any help in the sleep department would be a blessing.

I tried the long acting form of ambien for 10 days, it didn't even work as well as the regular version, but what you suggested would be worth a try.

hope the AS goes well for you, I am a big believer in it, for men with the right stats to justify it. my plight is the result of PC treatments, both surgery and radiation, that went terribly wrong. so if there is any way one can avoid those risks, I am all for it

good luck,

david

I suggested the same as shineytop some posts back - that some sleep meds address waking up during the night, while some are tailored toward putting you to sleep in the first place.

Guess I didn't hit you at the right time, or he said it 'better' somehow -- but I hope you get the message - there may be help out there. And just because something didn't help (or maybe nothing even existed) in the past doesn't mean something won't help now.

Post Edited (Lynnwood) : 4/19/2014 9:46:45 PM (GMT-6)

Oh, I know *all* about black out curtains, complete silence - hearing the clock movements, seeing that glimpse of the light from the alarm (mine lives in a drawer). Being awake because my partner is breathing. Being awakened by a cat tip-toeing across the carpet. Insomnia for well on 45+ yrs now.

It was so lovely (NOT) when I had to live in a dorm. I swear I could hear every person in the building breathing, snoring, turning over...that was a 3-story building, with 14 double rooms on each floor. Hearing the stream heat in the radiators. Sometimes I would swear that I could hear an ant cross the floor or feel the proverbial pea under the mattress.

Several friends know when I visit them I'll unplug all the ticking clocks anywhere near my sleeping area...usually I'm pretty conscientious about re-setting them & turning back on when I leave. The worst these days is my fathers house. The main clock he uses is quite near my cot. And his hearing has declined, so he can't hear the clock at all. To me, every second ticks and sounds like a gong in my ears. And the last time I was there, I got a migraine right at bedtime. Thank goodness for sleeping meds and for learning to sleep with a pillow over my head.

I do find a hot shower, clean sleep wear and clean sheets, a 62 degree room with an electric blanket, and a glass of water with a piece of cheese are quite helpful - and the black out curtains imperative!

Hope this has at least amused you...Lupus gave me sleeping meds for which I am thankful. Racing brain at 3am is a thing of the past...

And I'm sure God will forgive you missing the service.

Hi David,

Sorry to hear about your situation and lack of resolution on the diagnosis. I think though that you are being really hard on Mel when I think what he says makes sense and comes from a place of caring. Same with what Sephie says.

I know you are in pain and that there is no light at the end of the tunnel. Again I am sorry that this is the case.

Regards,
An

David, have you looked at the side effects of long term Ambien usage. They include some of the symptoms you've been describing.

Clocknut.........So where do you find the side effects of long term ambien use? I don't see much except for lack of effectiveness.