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Posted 10/2/2011 8:15 AM (GMT 0)
David, my heart aches as I read your post. Thank you for your total honesty about your pain and suffering. There are many of us here that are under a year with this PCa journey and we learn so much from the Patriarchs of this website, which I consider you to be one of them.

I had a bicycling accident in 1992 that ruptured and herniated my last two disc's L4-5 and L5-S1 which caused the nucleus of the disc to rupture and pushed against my spinal cord. Horrific pain for a year and I gave up and had a two level lumbar fusion, that I don't recommend to anyone. The good news is that it worked until 2005 when I young man rear-ended me on the freeway. Traffic had stopped, including me, however, the young man behind me was traveling 80 mph right before he realized he was going to hit me and then stepped on the brake as his car impacted my car. Needless to say, it ruptured two more disc's above the fusion level and damaged all the cartlidge in my lumbar facet joints. Surgery isn't a option since the probability is about 15% success rate. I was on Lortab, Hydrocodone, Oxydcodone and Percocet. All of those pain meds as you know last four about 2-4 hours. So two years ago, I gave up and went and saw a pain specialists and made a quick medication adjustment and put me on a continuous release morphine called Avinza, and as your replys have stated, it takes a while to callibrate the exact dosage, but I have to tell you and give you hope that it has made a world of difference in my life. The Doctor said he has had many patients tell him it is life altering and I am one of those that can say it has given me the relief that I sorely needed.

I have always said that pain is a 13 headed beast that has no mercy and it eats you alive from inside out. Unfortunately you know this already. But before I switched to the continuous release pain medication, I would wake up every night way too many times, so I was exhausted, which increases the pain the ability to deal with the pain. Hopefully you are taking continuous release Ambien, because that will help you sleep and stay asleep. Okay, it is 2 a.m. and I can't sleep, cause I only took a half of one and just took the other to try and get a few more hours of sleep. I am trying to save money and make the med's last longer, since they are so expensive.

Many of the patients that see the pain specialists have nerve pain, which is as horrible as a spinal cord injury. I have to say, the doctor may be thinking he is doing you a favor with the lower level pain medications, but he isn't. I am no doctor but I have been around the block dealing with severe pain since 1992 and I have to say, you need to be on some kind of morphine and they have so many variations that are continuous release and they will provide you with pain relief so you can sleep. If you don't sleep, you get severely depressed. You don't need that along with prostate cancer. So please on Monday morning, get on the phone and find a pain management clinic and get an appointment and start getting the pain relief that you desperately need.

i tired acupuncture and you should do also. However, it didn't do anything for me since my medial branch nerves that go through my facet joints have no ligament tissue to protect the nerves so the bone on bone is grinding on the nerves. But maybe it will provide you with some relief. It sure does for some people, maybe you would be one of them. You clearly need to be on the Class 1 pain medications. It will make a major difference in your life.
It will slow your bowels down and will cause major constipation, so talk with your doctor about over the counter items like Senokot, or Senna Plus (vegetable Laxative plus stool softner) and a Stool Softner with Docusate Sodium and that will do the job on the plumbing downstairs.

Please start looking up pain management clinics on Sunday so you have their phone numbers of Monday and get in and get the medications that are going to give you the relief that you need so you can focus on the PCa.

You are in my thoughts and prayers. May the good Lord bless you. Hang in there buddy. Us newbies need you partriachs to stay around and continue to guide us.
Posted 10/2/2011 4:32 PM (GMT 0)
thanks devasted for your post on the subject.

sounds like you have your own major pain situation going on there.

i tried the extended ambien when it came out for 10 days, didn't work well for me. i have been on ambien 10mg for over 10 years now. since they are generic, i can get a 90 day supply for about $21. When I first started on them, I use to pay $165 a month for a 30 day supply. Generics really help.

I am on day 2 of the new med combination my dr put me on, and its already helping a lot. slept better last night, and the pain has already been knocked out a good 80% at least, so i feel it was just the question of getting the right mix.

as i told the others, i will pass on the accupuncture stuff. i personally don't believe it works, and i have read studies where the placebo in accupunture studies was more effective than the real accupuncture. each to their own, i have no problems with those that are into methods like that, its just not for me.

i am fortunate that even after being on strong pain meds for 2 plus years, they never cause me any kind of constipation problem, i go multiple times a day on my own.

appreciate your words.

david in sc
Posted 10/3/2011 8:30 PM (GMT 0)

Purgatory said...
Casey ... Thanks.

Glad to offer helpful inputs to you and other readers who deal with chronic pain; I count myself among the 1 in 3 between 50 and 65 reporting chronic pain.

Many here, me included, are wishing for you the strength to take the steps to stack the odds in your favor, helping to enable a more favorable outcome.  Our hope for you is to get as many of those "odds" working in your favor as possible!

Posted 11/1/2011 11:20 AM (GMT 0)
I see the discussion has stopped here.  I wish the pain for Ron would stop.  He has been in the hospital since Saturday.  He has pouches that are infected in his colon.

The presence of these pouches on the colon is called diverticulosis. When the pouches are inflamed or infected, it is called diverticulitis.

Poor guy, it never seems to end.  He was not given any food or water for nearly 48 hours, and now has added jello to his liquid diet.  Has anyone else had this?

Posted 11/1/2011 12:24 PM (GMT 0)
Just to let you know we will be praying for you. So sorry to hear about your pain. I am Grandpa Tim's wife and wanted to let you know we care and will keep you in our thoughts.
Posted 11/1/2011 1:09 PM (GMT 0)
Purg,
I have a stockpile of pain meds, oxycontin, oxycodone, hydrocodone, morphine etc that has been prescribed to me.
I usually try one when first prescribed to see if I get relief. Most do not take away the pain they just make me feel better about the pain.
Also they either mess with my head, don't need that with the HT.
I guess if I took enough I may get some relief but I choose to remain conscious so I can enjoy my son.
Have you thought about nerve blocks?
My hips and lower back are what I see a pain management doc for and he has been performing nerve ablations and nerve blocks. This gives some relief for some time but seems to be only temporary for my condition.
Art
Posted 11/1/2011 1:18 PM (GMT 0)
Aimzee, may ex has it and she has to just drink water and chicken broth for a few days until it settles down. She avoids corn, leafy foods and anything with small seeds at all times. Hope he feels better soon.
Posted 11/1/2011 7:10 PM (GMT 0)
aimzee - sorry to hear about ron's current situation, i certainly understand the part about him "not getting a break". i have never had what ails him, hope he gets on the mend soon. give my best to him

thank you, grand pa tim's wife for caring.

art, looks like we have two different approaches to pain meds for chronic pain. for starters, none of the pain meds make me "Feel Good", or feel good about the pain. When I take them as directed by my oncologist, they relieve a good 80% of the pain, most of the time. I told my doctor just last week, that I wasn't' will to take enough meds to get to the 100% relief part.
I have been dealing with severe pain for over 3 years now, and I have learned how to live with it and deal with it.

for me, it doesn't mess with my mind in any noticable way. but then again, been on stuff for a long time. but i never experiment with the meds or their doses, i do it exactly when and how my doctor prescribes. he calls me every week or so and sees how i am doing, and if adjustments are needed, we mutally agree on it.

between the morphine patch and taking 6-8 Loratabs a day, plus Tranzene and Ambien at night, that's all the meds I intend to take at this point.

i have not even a remote recreational interest in any of the drugs, if i didnt need them, wouldnt be on them. as far as addiction, my dr(s) have said, if the body is really in deep pain and in needd of the drugs, addiction risk is low, and my oncologist feels, that now that my prostate cancer is advanced and unstoppable, I dont need to sit around worrying about getting addicted to meds that I need. I tend to agree.

david in sc
Posted 11/1/2011 8:36 PM (GMT 0)
Oh, David... I didn't mean to hijack your thread but it seems we meet here often!  Ron and I discuss your situation and pray.  We also talk about Sonny and his wife.  Remember, I told you that Ron felt he was "addicted" to OTC pain killers?  They are giving him pain meds in his IV.  You mentioned Ambien, well they gave that to him last night and he said he felt like he was flying.  Like he was there but he really wasn't.   It was his hope that they would find what is causing his testicle pain, but found nothing.  Well, that's a good thing - in a way.

What you and several others are going through is 100% worse, if we can measure pain.  I appreciate your kindness in allowing us to share.  It seems PAIN is a topic onto itself.  I pray you will feel some relief along your journey.  You know the phrase, "I wish I could heal you with my magic wand."  I wish I could for you.  I say that to my Grandbabes when they have a boo-boo.  Wish it really worked!

Thank you, Startech for the well wishes.  There goes his cravings for popcorn, peanuts, and 9 grain bread.  I didn't know about leafy foods.  I bet there is a forum here which discusses this topic!

Questionaboutit, I don't know if you have a nickname or real name! :-)   Oh - my goodness, you had a full cleasing experience, didn't you?  Your advice is right on.

Art, I hope you can enjoy your son to the fullest!

David, how is the new medication working for you?  Is it still 80% relief?  I hope you are enjoying some beautiful Fall weather!  I love your children's names.  You are in my thoughts and prayers.

Posted 11/1/2011 11:59 PM (GMT 0)
Aimzee,

If the scope of the pain stayed constant, the current meds would still be fine, but as good as the meds are working, the area of pain and the depth of it, particually my hip, is getting worse over time. This is the part that deeply concerns my doctor. He still feels most of the pain is related to severe and permanent nerve damage as the result of my SRT going so badly. I am coming up on being 2 years post-SRT. In a way, I wish the upcoming Pet Scan would show something, but of course, hoping it doesnt. But if it did, at least it would allow some reasonable explanation for such increasing pain.

I mentioned to the doctor, if I am having this much trouble now, with chronic pain, then how are we going to manage it when the cancer progresses further, kind of a scary thought.

david
Posted 11/2/2011 12:17 PM (GMT 0)
Thanks Aim.
My son is having a blast these day and since he is my one and only, then I get to spend a lot of one on one time with him.
It is a wonderful world.
Art
Posted 11/3/2011 5:57 PM (GMT 0)
And when people say hello, they are saying I love you. Its a Wonderful World, Louie Armstrong and more recently, Bruddah Iz from Kauai. Thanks Art for reminding me. When I think of Purgatory and all the advice to a guy who knows exactly what he is doing. I think of the quote about President Reagan, from one of his political advisors{ advice giver }
Paraphrased, " let Reagan be Reagan ". It seemed to work for him.
Posted 11/4/2011 2:26 AM (GMT 0)
logo,

i absolutely don't get your last post. Can't tell if it was a compliment or an insult. Care to enlighten me?

david
Posted 11/4/2011 2:49 AM (GMT 0)
david in sc
Hope I don't get banned from this site, but you were mentioned in my family's dinner time prayers tonite. Stay strong. I don't personally know you but I consider you a friend how helps people while suffering pain yourself. That my friend is what I call a true hero!
Bert
Posted 11/4/2011 2:53 AM (GMT 0)
bert,

i don't think anyone would ban you for saying you were praying for someone in particular, me in this case. Your prayers are appreciated, and it doesn't offend me at all. I am a man of deep faith, but I know I can't get into that subject here at HW.

thank you for remembering me that way.

david in sc
Posted 11/4/2011 3:18 AM (GMT 0)
Thursday November 3rd Update

Wish they would hurry up and get that special PET scan set up. After having a bit of a breather for a few weeks, courtesy of increased pain meds mostly, the spread of the pained areas is increasing more and more. We went on a small day trip today, less than 90 miles round trip, and before I had driven 30-40 miles, pain was so bad in my hip and back. Walked a few stores, had lunch out, and was hurting so bad, had me all edgy and on the edge of panic. Even after taking the meds. Was all I could do to drive back home, and then took a 1 1/2 hour or so nap, well, no sleep, but lying down in the bed. By the 2nd med pass of the day, most of the pain was back under control. With the hip pain, which is still the most severe of the areas, I swear its deep inside the bone itself. If this is any indicator of what it would be like to have bad and painful bone mets in the future, kind of scary to contemplate to be honest.

The doctor is willing to up the meds even more, but I really don't want that either, I want to be able to think clearly, that's an important function to me, don't want to feel drugged up. For the most part, the meds don't have any sedating effect on me, sometimes I wish they would, then I could sleep away some of the time.

At its worse, I can be lying down on a nice bed, laid out flat, and still have throbbing and burning pain in these areas, even while medicated. The trick I have learned, is to "freeze in place", and not move a muscle for long periods of time, while distracting myself watching something on tv. Not a solution, but it helps when I am having a really bad spell.

If the scan would show some definitive area, i.e. a small met or whatever, then at least it might be able to be dealt with. But its kind of hard to treat what can't be seen. Though the doctor has ruled out any future radiation for hot spots like some do, he said I am so far over my lifetime radiation limit as it is. So not sure what they could do, if radiation wasn't used to treat a met. THis is all new ground for me.

David in SC
Posted 11/4/2011 4:03 AM (GMT 0)
David:

David:

It pains me to read this. So sorry for what you are going through.

I wonder, IF it turns out to be bone mets., if HT would help in some palliative way. In other words, isn't HT supposed to shrink those mets for awhile? Also, some of those other newer medications (I can't remember which is which, but stuff like zytiga, MDV1100, abiratone, provenge, etc. -- I don't recall the exact spelling of these drugs) I THINK are supposed to help with bonee mets. This is where you really need more than just a general oncologist. You need a PC oncologist specialist who is up on the latest stuff.

But again, the above remarks presupposes that you do have bone mets. Frankly, I suspect/hope that you do NOT have bone mets. I thought bone mets show up very clearly on these scans. But clearly something is going on.

David, if you get no answers, would a trip to Duke or some place else be feasible?

Anyway, this is terrible. I hope you get some answers. For me, the fear of suffering from the bone and other symptoms of advanced PC is quite real and that is an argument for doing HT. The HT maybe can keep things at bay while new PC tx. get developed (that's if one is lucky and the HT works for years). Unfortunately, the HT SE are also scary.

What a dilemma!

Mel

Posted 11/4/2011 4:08 AM (GMT 0)
David:

One other thought: I know for me they might also recommend that I take one of those biophosphates (again, I'm screwing up the spelling, but it's stuff like fosamax or boniva to strengthen the bones) when I start HT. Maybe ask your doctor if such a drug is appropriate for someone with your symptoms (despite the fact that you have yet to find the cause)?

Mel

Posted 11/4/2011 4:18 AM (GMT 0)
mel

he has never mentioned that, but a good question to ask on my next visit. been fortunate all my life, have never broken a single bone. know you are major anxious about that next psa test yourself, your wait will soon be over.
Posted 11/4/2011 6:26 AM (GMT 0)
Purgatory, It was without a doubt one of the higher compliments I could pay you, my brother. There reaches a point after all the discussion, arguements, whatevers, that people have to leave it alone. Anyone , and especially those who continue to make the same point over and over, teases me to think, that something else is goin on. Ohio ST was a fanatic about it, others are more subtle and it has to be annoying. No man, I,m at peace with you in the same way you are at peace with yourself. No worries! I just want you to stay strong and be able to enjoy that state down there and all the surroundings. Hey I love ya man. No, I try not to use sarcasm. Though, I am a ninja worrier with hightened expertise in the art. Good luck
Posted 11/4/2011 12:58 PM (GMT 0)
Logo:

You are starting to sound like Charlie Sheen. Scary.

Mel

Posted 11/4/2011 1:40 PM (GMT 0)
Mel, neither I nor my doctor are saying/feeling that it might be mets, but its still possible, and the hopes are with this next scan, it may either give some evidence of mets, or another all clear for now. The only thing that has been ruled out, is any normal ortho related reason, the ortho specialist feels strongly about that.

As far as my doctor, he's an advanced level oncologist that has primarily specialized in prostate cancer, his non-prostate cancer patients are women that are dealing with advanced and difficult to treat cases of breast cancer. I feel he's as close to have a prostate cancer only specialist as I can hope to have. He doesn't deal with men or women, unless they are in some level of advanced cancers.

david in sc
Posted 11/4/2011 7:10 PM (GMT 0)
David:

I keep reading about all these new drugs that are just out or look real good in Phase III trials (of course, they don't seem to talk much about the SE and many are horrible, I'm sure). Hopefully, your guy is familiar with them or has a contact who is. I can see these drugs as possibilities for you (and me).

I posted elsewhere, but my PSA was another kick in the butt.

Mel

Posted 11/4/2011 8:10 PM (GMT 0)
Purgatory-I hope some of the good will you pass to other's comes back at you!
Posted 11/4/2011 9:11 PM (GMT 0)
Purgatory, did you get my response to your last request ok?
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