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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 10/19/2011 10:21 PM (GMT -6)   
I have been a member of HW's prostate cancer group for 3 years now, but have been lurking in your group for about a year.
 
I am a 59 year old male living in SC.  I was diagnosed with prostate cancer at age 56, and had open Surgery to remove my prostate.  There were lots of complications and had constant trouble with bladder neck strictures.  I had 6 additional surgeries to deal with the strictures, but all in vain.  During that time, I was on catheters for 1 1/2 years total.  The surgery failed and t he cancer returned in 9 months with a vengence.
 
Then I underwent salvage radiation treatments, a total of 39 treatments for 72 gys of radiation.  It was administered incorrectly and I was getting burned by the 4th treatment.  In the end, my bladder and bladder neck was destroyed as the result of the radiation, and I had to have a suprapubic catheter in place for 51 weeks straight, right in the middle of a very inflamed bladder, unable to urinate in the natural way.
 
A year ago, had to undergo my 8th operation, had an Urostomy operation, where my damaged bladder was by-passed and ended up with a permament stoma, so now I have to urinate via the stoma into a bag.
 
After all the trouble that the radiation caused, it too failed to stop the agressiveness of the cancer, and now its back, and there is no longer any curative hope of stopping the cancer.
 
I have been suffering severe chronic pain now for 3 years as the results of all of this.  Most of my pain is in my right hip, but covers my entire lower back, right leg, etc.
 
Fortunately I have a very good oncologist, and while he says he can't do anything about slowing the cancer progression, there is no reason for me to be in such severe pain.
 
Currently, I wear a fentanyl patch which I change every 72 hours, and he put me back on Loratab 10/500.  I am allowed to take up to 8 in a 24 hour period, but so far, have never had to take more than 5 in a day.   This combination of pain meds gets rid of 80% of the pain most days.
 
I was already on Loratabs for the past 2 years.  My original doctor switched me for a month to Oxycotin, but it was not very effective for me.  I am fortunate, that I have no problems with the meds.  I do not get nauseated, have never had constipation problems, and believe it or not, they rarely make me drowsy.
 
I was put on SS disability as of this summer, after a 2 year fight.  It was interesting that SS wouldn't put me on it for having Advanced Prostate Cancer, but they did because of the chronic pain and fatigue I have as the results of treatments for the cancer.  My oncologist has the pain diagnosed officially as "Cancer Pain" as the result of severe nerve damage because of the blotched radiation treatments.
 
I find it so important to have a good and caring doctor.  He calls me at home on his own initiative about every 10 days to check up on me, I think that is a rare doctor to do that.
 
So far, living here in SC, I have no problem getting my meds filled, typically at CVS drug stores.  You should see what the bottle looks like that contains 160 Loratabs at a time comes in.  Makes me feel self concious, but so far, no strange looks or rude remarks from the druggists.
 
I have read your stories here, and empathize with each of you.  No one should have to suffer in chronic pain in this day and age, and I feel for those of you, that have trouble getting the meds that you desperately need, or made to feel like you are a druggie or drug seeking for trying to do so.  Its just not right.
 
Sorry this is so long, but decided it was time for me to come forward in your group, as I have learned a bunch from lurking here.
 
My best to each of you.
 
David in SC

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 10/19/2011 11:33 PM (GMT -6)   
Hi David,
I am truly sorry to read all that you have gone through and all that you continue to go through. Have you considered going to a research hospital to see if there is anything on the horizon or investigational trials going on? I don't know if it would make a difference, but maybe there is something they can do to slow down the progression?
The one thing that concerned me was the amount of tylenol that you potentially can take in any 24 hour period. The absolute maximum daily intake of tylenol is supposed to be no more than 4000 mg, or 4 grains. You potentially could take 1000 mg more than that, daily. There is vicoden ( aka- lortab) that comes in 10/325 , which is the same amount of hydrocodone but less tylenol ( 325 mg vs. 500 mg in each tablet). It might be worthwhile talking to your oncologist about the amount of tylenol and he can easily convert you to the 10/325.
I'm glad that you joined us here, although I am truly sorry that you need to be joining us at all....
Welcome,
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/19/2011 11:45 PM (GMT -6)   
David-
Very sorry to hear all you have had to endure. My mom had gotten burned from radiation. Not a good thing to go through. Hope you can keep getting as much relief as possible.

Sandi- He is at 4000 a day with the allowed 8 pills.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9289
   Posted 10/20/2011 12:33 AM (GMT -6)   
Hi David,

And I'm so glad you decided to post on the Chronic Pain forum. I remember when my dad had radiation treatment for his prostate cancer. He was on much less than you were and they still burned him terribly. It makes me wonder why they go so overboard when they know the consequences.

You are an amazing and strong man and I respect your courage for continuing on with your treatment and fight with SSI. Sometimes those folks are totally nuts. Since it's done on a state by state basis they don't seem to have criteria in common. We've seen such huge gaps in judgement from one area of the country to another. People have even moved into a state where it's easier to get SSI for someone with their condition. What a shame.

On the bright side...if there is one... this is a great bunch of people in here as you most likely know. And we even have several great guys to chat with. Some forums, especially the fibromyalgia forum, are mostly women. It's nice to have a mix of opinions and experiences.

Keep in touch and take care..OK?
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis in Neck/Hands/and slowly meandering around other places....and other maladies as discovered.
~~~~~
It's kind of fun to do the impossible.
Walt Disney

Mysti
Regular Member


Date Joined Jul 2011
Total Posts : 101
   Posted 10/20/2011 12:57 AM (GMT -6)   
Hi David,
I wanted to also welcome you to the Chronic Pain forum. I'm glad you decided to join us. However, I am so sorry for what you have gone through and continue to go through. No one should have to suffer as you have. I'm really glad you have a good doctor and are getting 80% pain relief.

I don't know what to add here that Chutz hasn't said, but just wanted to pop in and say hi. I hope you continue to post here and keep us updated. Take care...and sending you gentle hugs...
DDD, 3 bulging lumbar discs, bone spurs, facet joint arthrosis/sclerosis, osteoarthritis, possible fibromyalgia (my dr's are telling me that I "most likely" have fibro but won't actually diagnose it...)

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 10/20/2011 5:58 AM (GMT -6)   
David,
I wanted to stop in and say welcome, although like other posters, I am very sorry for what you have been through and the pain that brought you here.

Welcome,
Mindy

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/20/2011 9:07 AM (GMT -6)   
Hi David, I am Kathy/nini, I to just wanted to say what a brave man you are, you are truly and fighter and my come out of this on your pure strength.  I pray this is so, oh and welcome to this forum, the people here are the best.  This forum has been the best thing to happen to me in  long time.
 
Please keep on fighting, and we will keep on praying, good luck and take care,
 
Kat
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 10/20/2011 2:39 PM (GMT -6)   
sandi, didnt know that the loratab could come as a 10/325, i have only been exposed to the x/500 doses. will mention that to my oncologist later this month. thanks for the tip

thanks bill, and as a rule 5 is my usual daily intake, so that would be 2,500 on the tylenol component. my wife is a nurse, and she helps me keep an eye on the med intakes.

chutz, thanks. for me to get the SSD, it finally took a very good attorney, and the direct help of my U.S. Senator, and in the end, it was approved quickly. The presiding judge approved it on her own, without me or my attorney present, and simply said that my case was "a no brainer", and she was angry at SS, so she made them back-pay me all the way to the actual date of my diagnosis, which was in August of 2008. I was impressed on that part, and she made my results permament, so I will never have to be re-evaulated to stay on the SSD. That was one of the few silver clouds in my horrific journey.

thank you, mysti (cool name too)

thank you both, mindi and kat, glad i finally took the step to join in here.
________________________________

what i didn't mention in my original post, is this prostate cancer is my 4th time with a dangerous cancer in the past 12 years. i have already survived 3 bouts with an ultra rare cancer, porocarcinoma, it has a mortality rate of around 50%. in that fight, i underwent 5 operations, including extensive plastic surgery to my scalp, and 35 rounds of old school radiation, which by itself left me with chronic fatigue and pain. at the time, i was one of only 38 known people in the entire US that had that type of cancer diagnosed, with less than 300 cases in the world. how i ended up with something that ultra rare is beyond me.

some how, i keep bouncing back from all of this, either i am too dumb to stay down, or perhaps just a stubborn old buzzard, lol, not sure which.

look forward to being able to help and support your guys here too on this chronic pain group, as i have been trying to do for 3 years on the prostate cancer community.

no one should have to suffer from pain.

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 10/20/2011 2:45 PM (GMT -6)   
Dear David My husband was dx'd in 2006 9.9 gleason, w/o surgery he'd last 2-3 months. After surgery, where they had to take out valves and bladder tissue, doc gave him 2 years.

He was denied Disability. A man that never drew an unemployment check in his life, terminally ill and denied. So I understand your frustration at the system. He too was young (56) for PC, more saggressive at that age, right? He had 43 rad treatments and female hormone shots, so we could bond together having hot flashes together-lol. He did get Dis after about 1 and 1/2 years. Why do they want to stress cancer patients like this-it just ticks me off. He is lucky, no chronic pain yet. I am CP, and have been without a pain doc for 6 months(long story and unfair) I have been in my bed pretty much since then. I found 10 lidocaine patches and my heatingpad and motrin til my stomach bleeds-lol.

The doctors in this country have allowed themselves to be co-opted as DEA lackeys. The AMA used to be one of the most powerful lobbies in the US. "First, do no harm". Now the DEA decides how much adderall will be manufactured and they screwed up and shorted it, and my husband and daughter have been withoutadhd meds for 2 months. This is America for God's sake. Why aren't we raising a stink?

Sorry it makes me so mad. You cannot even get real Nyquil anymore, even behind the counter. I know drugs are a big problem, but maybe the cops should do a better job than making innocent people suffer.

Thanks for listening.

All PCers are in my prayers, I hope you get some relief and some really good days ahead

Maggie

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 10/20/2011 6:09 PM (GMT -6)   
maggie,

i can relate to your husband's situation, and can only hope the best for him. sounds like he has been through a lot too. my current prognosis is about 2-4 years, as i am dealing with an agressive strand of prostate cancer. i never had any symptons prior to my diagnosis, just a very fast rising PSA score. for me, there is no curative hope left, and i have chosen not to go on hormone therapy (which could slow down things temporarily). i don't want to add any more pain or suffering on top of what i am already dealing with.

social security would not approve me for the cancer either, it was the persistent pain and fatigue that finally won them over, plus pushing the right buttons with their system, this is where a good attorney comes in handy. i paid into the ss system for 41 long years, so its no handout to me, its an entitlement that i am entitled to. i will take anyone's job, if they are willing to take my cancer from me, doubt i would find any takers.

fortunately, here in SC, getting the meds haven't been any problem. the current rage here among the locals, are fools that are grinding up and snorting bath salts to get high. now county by county, they are banning the sales of such things.

i don't get any kind of high or pleasure off my meds, i only take what is needed, and only as the doctor prescribes. if it weren't for the severe pain, i wouldn't do any of it at all. unfortunately, i am not going to ever get better, as the cancer progresses, pain will be even more of an issue, but right now, don't want to think about that part.

good luck to you and your husband, i feel for both of you

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 10/20/2011 7:16 PM (GMT -6)   
I'll be praying for you and your family. The way the surgeon explained it is in younger men, it is more aggressive. My Dad was dx'd when he was 65 and lived til85, and PC didn't kill him.

Surgeon said he cut main tumor but there are basxically tendrils od cancer cells coming off the tumor. If he cuts that out, he kills the patient. Was that your understanding? Pat's psa has been zero fro 4 years so you guys are going to beat the stats!! He will do hormone shots when it starts rising but that's about it..I'll keep you and your familyin my prayers

Maggie

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/21/2011 10:43 AM (GMT -6)   
Wanted to say welcome to our family, we are like a family here, but so very sorry what
your going thru...many Prayers and well wishes to you and keep hope that you can beat those odds...
Prayers
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 10/21/2011 11:08 AM (GMT -6)   
I too want to say welcome to CP forum. I am sorry that you have to be here but I don't think you will find a better group of people to be with.

From reading your story you have had more than your fair share to deal with and continue to do so. Its stories like yours that brings many things to light here at the forum and thank you for sharing with us.

I am very glad to hear that you have a wonderful oncologist, that means so much to a patient to have an excellent dr they can trust and like. Another thought as far as your pain goes, there is room to go up on your patch too.

You and your family will be in our thoughts and prayers.
Moderator Chronic Pain Forum

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/21/2011 1:21 PM (GMT -6)   
David, I am sorry you have reason to be on this forum, but welcome. I am sorry for all the medical struggles you have had, and I am very glad you have good pain control right now. This is a very supportive group, and there is also a TON of chronic pain knowledge on this board.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 10/21/2011 5:06 PM (GMT -6)   
heather - thanks, i am glad to be here, since this is going to be the way of life for me from this point forward, especially as the cancer progresses

straydog - thanks for the welcome, yes, my doctor started me on the lowest patch for 4 weeks, and it didn't help me at all. so it up it one size to the next dose, i believe with that patch there are 3 more higher doses available, when and if needed. he knew that i erred on the side of caution with meds - so he wanted to start me as low as possible, and adjust as needed. he calls me at home on the average of every 10 days to check with me, and is more than willing to make rapid adjustments as needed. even mailed my last adjusted scripts so that i didn't have to make the 45 minute drive to his office. now that's a good doctor

thank you, maggie and chartreaux, sorry i need to be here, but glad to be among you all. hope i can be a help here too

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10
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