New member

Posted October 1, 2006 · October 1, 2006

My Gleason score is 6 (3+3); PSA = 6.7. The Tumors are localized as

determined by EndoRectal MRI Coil 3 Tesla Prostrate Imaging. Due to

localization and high prospect for cure, am considering two options:

Radical Retropubic Prostatectomy or Robotic-Assisted Laporascopic

Prostechtomy. Leaning towards the latter.....welcome opinions.

Stan

>

> I would strongly urge this man to investigate all of his options

> before choosing surgery.

>

> Aubrey

>

> In a message dated 10/1/2006 2:58:52 P.M. Eastern Daylight Time,

> bryan.metcalf@... writes:

>

> Comment from user:

> 51 yr old African-American Male recently diagnoses with localized

> prostate cancer seeking info on surgicial options.

>

> You are especially welcome Stan Cuff as it is important that the

African

> American and Afro Carribean communities are part of the support

movement.

>

Posted October 2, 2006 · October 2, 2006

Stan - beginning with the disclaimer that each of our conditions/tx are

unique....I was dx 3 yrs ago, age 55 with Gleason 7 & psa rising to 7.0.

All test seemed to confirm it was still localized. I had several months

of daily 3-d external beam rad & seeds implants. Now 3 yrs out - psa has

gradually dropped to below 1.0 ...only relatively minor side effects

from radiation.

I was told by a couple uro's..should the psa seem to be rising and

approach previous levels - there are surgeons who will then go in and do

the removal surgery post-seeds. There is some diffrence of opinion on

this however...perhaps , Terry or others here have the background

for more informed comment. Stay in touch --- you've found a good group

for learning and support....al.b

>

> My Gleason score is 6 (3+3); PSA = 6.7. The Tumors are localized as

> determined by EndoRectal MRI Coil 3 Tesla Prostrate Imaging. Due to

> localization and high prospect for cure, am considering two options:

> Radical Retropubic Prostatectomy or Robotic-Assisted Laporascopic

> Prostechtomy. Leaning towards the latter.....welcome opinions.

>

> Stan

>

Posted October 3, 2006 · October 3, 2006

Stan,

On the limited information you have posted

it would appear that all options are open to you since they all have very

similar outcomes PROVIDED they are done by the best people available to you. That

is the key to the best results no matter what treatment option you choose. And make

sure that any doctor you talk to can give you details of HIS or HER experience

in the procedure you choose and the outcomes for THEIR patients, NOT the

theoretical experience of another doctor.

You might find it useful to print off the

list of questions at http://www.yananow.net/questions.htm

to focus on the important issues that you might want to consider before making

a final decision. You might also like to read this page http://www.yananow.net/survivpc.htm#topofpage

Al B says <snip> I was told by a

couple uro's..should the psa seem to be rising and approach previous levels -

there are surgeons who will then go in and do the removal surgery post-seeds. <snip>

Technically it is possible to have what is termed salvage surgery after

radiation although all the reports I have seen show some pretty grim outcomes

because of the scar tissue surrounding the radiated gland, which makes the

stitching up after surgery very difficult.

I have often seen men justifying their

choice of surgery by stating that they feel it is a good choice because if it

fails, they can have salvage radiation treatment, whereas, for the reasons

outlined above slvage radiation after surgery is more problematic. I have never

really understood the logic of this approach. If these men expect surgery to

fail but subsequent radiation to succeed, surely it would be better to have

radiation immediately?

All the best

Terry Herbert

1/60 Morna Rd,

DONCASTER EAST VIC 3109,

Australia

Telephone +61 3 9891 6883

Mobile +61 421 097 318

Skype: terryherbert1942

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of AL.B

Sent: 02 October 2006 11:46 PM

To:

ProstateCancerSupport

Subject:

Re: New member

Stan - beginning with the disclaimer that each of our conditions/tx are

unique....I was dx 3 yrs ago, age 55 with Gleason 7 & psa rising to 7.0.

All test seemed to confirm it was still localized. I had several months

of daily 3-d external beam rad & seeds implants. Now 3 yrs out - psa has

gradually dropped to below 1.0 ...only relatively minor side effects

from radiation.

I was told by a couple uro's..should the psa seem to be rising and

approach previous levels - there are surgeons who will then go in and do

the removal surgery post-seeds. There is some diffrence of opinion on

this however...perhaps , Terry or others here have the background

for more informed comment. Stay in touch --- you've found a good group

for learning and support....al.b

>

> My Gleason score is 6 (3+3); PSA = 6.7. The Tumors are localized as

> determined by EndoRectal MRI Coil 3 Tesla Prostrate Imaging. Due to

> localization and high prospect for cure, am considering two options:

> Radical Retropubic Prostatectomy or Robotic-Assisted Laporascopic

> Prostechtomy. Leaning towards the latter.....welcome opinions.

>

> Stan

>

Posted October 3, 2006 · October 3, 2006

Hi Terry,

I have never understood the salvage option. If a radiation or

seed implants have failed, then the cancer is probably already

systemic or outside the prostate somewhere. Simply removing

the prostate in this instance may not be sufficient to stop the

cancer.

If it were me and I had a recurrence, I would look to hormone

ablation.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

Stan,

On the limited information you have posted it would appear that all options are open to you since they all have very similar outcomes PROVIDED they are done by the best people available to you. That is the key to the best results no matter what treatment option you choose. And make sure that any doctor you talk to can give you details of HIS or HER experience in the procedure you choose and the outcomes for THEIR patients, NOT the theoretical experience of another doctor.

You might find it useful to print off the list of questions at http://www.yananow.net/questions.htm to focus on the important issues that you might want to consider before making a final decision. You might also like to read this page http://www.yananow.net/survivpc.htm#topofpage

Al B says <snip> I was told by a couple uro's..should the psa seem to be rising and approach previous levels - there are surgeons who will then go in and do the removal surgery post-seeds. <snip> Technically it is possible to have what is termed salvage surgery after radiation although all the reports I have seen show some pretty grim outcomes because of the scar tissue surrounding the radiated gland, which makes the stitching up after surgery very difficult.

I have often seen men justifying their choice of surgery by stating that they feel it is a good choice because if it fails, they can have salvage radiation treatment, whereas, for the reasons outlined above slvage radiation after surgery is more problematic. I have never really understood the logic of this approach. If these men expect surgery to fail but subsequent radiation to succeed, surely it would be better to have radiation immediately?

All the best

Terry Herbert

1/60 Morna Rd,

DONCASTER EAST VIC 3109,

Posted September 15, 2009 · September 15, 2009

Hi Shea

I am Welcome I am sorry you are in so much pain.I think you u

have found a good place with useful info.I also have really bad back pain and

leg pain which no med help but i determined to find something on my next office

visit if i can help u in any way just ask

Subject: New Member

To: Hugs-N-Pain

Date: Sunday, September 13, 2009, 4:02 PM

Hello to everyone. My name is Shea & I am 37 & live in Alabama. I have been

married for 8 yrs. and have 3 kids ages, 10, 7, & 4. I have been suffering with

Chronic Pain for 3 yrs. I don't know what has caused my back problems, unless

it is my weight, but then again, that is due to 10lb. & under babies. I have

not worked for 2yrs. I have filed for disability & was turned down & now my

lawyers are taking control of it. I joined this group b/c I have taken only a

couple of pain killers in the past & now I think the one I am on is no longer

working. I just want to know what others are out there. The last MRI showed

that I have severe arthritis, scoliosis, degenerative disc disease. I just had

a micro disectomy in June of this year, which has not helped. I am fixing to

have an epidural in my neck on the 28th b/c my ring finger & pinky on my left

side have been numb for 1 mo now. Just want to get some advice. Thanks....Shea

Posted December 29, 2010 · December 29, 2010

Hi my name is and I live in the united kingdom. I have had central pain

syndrome for 4 years now, when I was with my ex husband he use to beat me up,

one summer he pushed me in the garden and I hit my back on a very big wooden

poll and had the most excruciating pain ever since, I had X-rays MRI scans, dye

through my vains and no one knew what was wrong, until a doctor from the pain

clinic saw me an told me what I had

Sent from my iPhone

x

Posted December 30, 2010 · December 30, 2010

Hi , Welcome to the group...

_

In a message dated 12/29/10 10:51:25 A.M. Mountain Standard Time,

lisa.turner851@... writes:

Hi my name is and I live in the united kingdom. I have had central

pain syndrome for 4 years now, when I was with my ex husband he use to beat me

up, one summer he pushed me in the garden and I hit my back on a very big

wooden poll and had the most excruciating pain ever since, I had X-rays MRI

scans, dye through my vains and no one knew what was wrong, until a doctor

from the pain clinic saw me an told me what I had

Sent from my iPhone

x

Posted December 31, 2010 · December 31, 2010

Thank u

Sent from my iPhone

x

> Hi , Welcome to the group...

>

> _

>

> In a message dated 12/29/10 10:51:25 A.M. Mountain Standard Time,

> lisa.turner851@... writes:

>

> Hi my name is and I live in the united kingdom. I have had central

> pain syndrome for 4 years now, when I was with my ex husband he use to beat me

> up, one summer he pushed me in the garden and I hit my back on a very big

> wooden poll and had the most excruciating pain ever since, I had X-rays MRI

> scans, dye through my vains and no one knew what was wrong, until a doctor

> from the pain clinic saw me an told me what I had

>

> Sent from my iPhone

> x

>

Posted June 19, 2011 · June 19, 2011

Another weird new symptom I've been having is that in response to loud sounds,

especially if there is more than one, my right ear gets that feeling like when

you yawn, or fight a yawn (kind of like a vibrating type of feeling), and my

right eyelid starts to twitch. Not sure if that makese sense to anyone but me,

of if it's anything to worry about. Don't know if it's sensory overload, some

type of neuropathy, or just nothing. Anyone else ever have it happen?

Jen

Posted June 19, 2011 · June 19, 2011

Marta,

I think I have tried pretty much every single muscle relaxer on the market, yet

my PM won't even budge an inch or show even a little compassion and

understanding that Soma really is the only muscle relaxer that has any effect at

all, or doesn't have some nasty side effect. It also doesn't help that he's

probably the stingiest doctor I've ever met when it comes to pain medicine as

well. I've heard that a lot of states are talking about or have made Soma a

Schedule IV drug, but is that low of a schedule worth making such a big deal

over? I have Periodic Limb Movement Disorder, which I take Klonopin to control

and is also a Schedule IV, and no one seems to take issue with that!

I know it has the potential to be addicting if abused, but after so many years

of taking it and for almost 7 years, Oxycontin, without a single issue popping

up, you would think that I've proven myself to be responsible with my

medications.

Thanks for your note, and I too hope I find someone who isn't cowering under the

DEA so badly that they won't write a prescription for a muscle relaxer!

Jen

Posted June 19, 2011 · June 19, 2011

Marta,

You really must be like me when it comes to muscle relaxers. Flexeril,

Zanaflex, Parafon Forte, and I can't remember what else were about like taking a

placebo for me too. Several others I just can't take. Norflex makes me sick to

my stomach, and Skelaxin, my most recent one, I think is part of the pain

escalation problems I'm having now.

You're right, of course, that a lot of drugs, even OTC ones, can be misused and

abused. If not, why would so many of them be behind the pharmacy counter? I've

yet to hear a horror story about anyone ODing on Soma though. I guess maybe I

live in too small of a town for that. All I hear about in this area are

Oxycontin and Heroin....wouldn't you say those are much more of an abuse and OD

risk than Soma? Oh, by the way, check into Ohio and their new Prescription Drug

Task Force, and all of their new policies. You'll forget you are in the US.

My PM is back from vacation tomorrow, and I have an appointment in the morning.

I would almost feel sorry for him if I hadn't spent a whole week suffering while

he and my doctor screwed around going back and forth about what, if anything,

they were going to prescribe me for the pain. Yes, seven actual whole days.

He's going to be very lucky if I can muster up a civil attitude as bad as I

still feel! I will have to post afterwards and let ya know how it goes.

Jen

Posted June 19, 2011 · June 19, 2011

I agree on the Flexeril. I can take 20mgs and it barely helps but it does

some if used along with my other meds.

I may talk to my doctor about Soma but will be prepared for a

disappointment. Flexeril does not help me sleep.

My doc put me on Doxepin for sleep. Usually I take 100mgs of that but

sometimes it takes mg. I was seeing a PM doc but of course the co pay is

double in cost to see instead of my PCP who is a internist. I just started

going back to her after a year with PM and realized she can and WILL

prescribe the same meds so I decided to save the money and continue with

her. I do have a appt with a new RA doc so we will see what he says but

once again

a higher co pay. SIGH...

Debbie

On Sun, Jun 19, 2011 at 5:11 PM, Marta wrote:

> **

>

> Flexeril is like taking candy for me, it doesn't even make me sleepy, let

> alone help the muscle pain. I've also tried Baclofen and numerous other

> muscle relaxers, but the only one that does ANYTHING is Soma. The real

> name of the medication is carisoprodol and it works really well...BUT, it

> can be addictive and dangerous if misused...of course, so can TYLENOL, but

> no one is putting THAT on a schedule....*sigh*

>

> I don't go to a Pain Management doctor for my meds, as my PCP is happy to

> prescribe most pain meds...and I see a PMP who only does shot/Stims/etc.

> My doctor is really easy to talk to and he really does research things, so

> I

> shouldn't complain...but he's heard too many horror stories of people ODing

> on Soma, I guess.

>

> Marta

>

> New member

> >

> > Hi everyone. My name is Jen, and I just joined your group. I'm 40, from

> > Ohio, and married with 3 beautiful children. I have 2 daughters from my

> > first marriage who are 20 and 18, and a son from this marriage who is 2

> > 1/2.

> > I also have a gorgeous grandson from my older daughter who is almost 8

> > months old. People think I'm crazy when they hear I had a child while

> > having

> > chronic pain, but he's the light of my life and absolutely worth every

> bit

> > of pain I had to endure to have him.

> >

> > I've had chronic pain for a little over 8 years now. It started with

> > Fibromyalgia, caused by a freak auto-immune like reaction to the

> antibiotic

> > Levaquin, followed by steroids to treat the reaction, which is standard

> for

> > a drug reaction, but with this class of drugs, is a HUGE no-no. It just

> > makes things worse. Luckily, right now, the Fibro is in remission, but

> with

> > something so unpredictible, who knows how long it will last. I wake up

> > every

> > single day wondering if this is the day it's going to come roaring back.

> >

> > I also suffered a shoulder injury that same year that required me to have

> > surgery. But before that, the orthopedist gave me a steroid injection,

> > dismissing what I told him about the Levaquin and steroid problem I'd had

> > earlier in the year, and big surprise, it made things 10 times worse. I

> was

> > in PT at the time, and had to stop immediately because of excruciating

> > pain.

> > I could no longer use my arm, and just the weight of it hanging at my

> side

> > constantly brought me to tears. I ended up having surgery 2 months after

> > that, with an x-ray in September and an MRI in November showing an

> > inexplicable amount of change in the amount of damage. The surgery I had

> > was

> > to relieve impingement and to remove a bone spur that had grown at a

> super

> > fast rate and fused together with a ligament. They couldn't remove the

> spur

> > without shredding the ligament, so both came out. They told me before

> > surgery that there was no guarantee that it would fix the problem, or

> that

> > it wouldn't come back, and it has. I now have impingement again, along

> with

> > another spur, as well as a partial thickness tear in the labrum.

> > During the first surgery, I was also given an antibiotic that was too

> close

> > to penicillin, which I'm allergic to, which caused a severe case of

> > antibiotic induced colitis, and I was deathly ill with that for about 7

> > weeks, losing 30 pounds in less than 2 months.

> >

> > I've seen numerous pain management doctors. Ones who didn't have the time

> > to

> > treat someone with " just " Fibromyalgia, ones who didn't believe it

> existed,

> > and ones who just wanted to do expensive procedures that didn't really

> > help.

> > Several of them left me in tears, and one even told me that I didn't have

> > Fibromyalgia, but food allergies......I guess ones that just suddenly

> > appeared when I took that antibiotic?

> >

> > Over the years, things have gotten worse. I was in a car accident that I

> > thought just caused whiplash in my neck and lower back, but it turns out

> > those injuries were going to stay with me a lot longer than that, namely

> > forever. Several years after being diagnosed with Fibro, I was diagnosed

> > with SI joint dysfunction, which later on was changed to sacroiliitis. No

> > matter what the name, it's very painful on a good day. On a bad day, like

> > for most, bad weather, humid days, etc, I can barely walk. I've had facet

> > blocks, epidurals, and even RF nerve ablations, none of which have

> helped.

> >

> > My neck is by far the worst though. For I don't know how many years, the

> > pain from Fibro was covering up the fact that I have multiple level DDD

> in

> > my neck. The c5-6 level disc is bulging out both sides, compressing on

> > nerves and causing stenosing, along with numbness and tingling in my arms

> > down to my fingers. My pain doctor tried a steroid shot, but it did

> nothing

> > but relieve the numbness and tingling for a while. It also causes

> migraines

> > that can be so bad I can't leave my house for even a short trip without

> > Maxalt.

> >

> > Right now, I would say things are at their worst. Last Thursday, I woke

> up

> > with horrible neck pain, and with very little ROM. And naturally, that

> was

> > the first day of my pain doctor's vacation. Ohio is a bad state to live

> in

> > if you are a person with chronic pain and need pain meds, but even worse

> if

> > your pain doctor is pretty adverse to prescribing them. He prefers to do

> > expensive procedure after procedure, despite the fact that none of them

> > have

> > ever worked. He finally did prescribe some pain medication last month, 30

> > low dose Percocets, written to be taken 3 times a day as needed, which he

> > told me to " put in your cabinet and try to forget you have them " . In

> other

> > words, don't take them the way they are written and make them last way

> > longer than what the prescription says.

> >

> > When I woke up with this huge attack of pain, his office told me to go to

> > the ER, but not one would touch me with anything other than Toradol and

> > Norflex, which helped about....not at all. I finally found an Urgent Care

> 6

> > days after it all started that was willing to help by writing me a small

> > script for some low dose Percocets. Then finally, 7 days into this

> > excruciating pain, my PCP and pain doctor got their stuff together, and

> my

> > PCP was allowed to write me a script for low dose Vicodin. Unfortunately,

> > even the Percocet really isn't giving me much relief from the pain. I

> have

> > more range of motion in my neck, but the pain is still pretty unbearable,

> > and has spread. It now goes down into the back of my shoulder and down

> into

> > my right arm. There are also multiple areas of my upper body that can't

> > even

> > be touched because it's painful. They hurt even NOT being touched. I have

> > as

> > many Lidoderm patches as I'm allowed plastered on the area. I'm not sure

> if

> > it's due to the disc pressing on the nerve, a reaction to the Skelaxin

> the

> > doctor insisted I try, the steroids they have me on trying to reduce the

> > pain and inflammation in my neck, of if it's another symptom altoghether,

> > like allodynia or hyperalgesia, for me to have to learn to deal with.

> >

> > Another challenge I'm facing is with muscle relaxers. Up until I went to

> > see

> > this pain doctor, I was taking Soma, so probably for close to 8 years,

> > minus

> > the time spent trying to find one that actually worked, and didn't cause

> > nasty side effects. However, my PM doesn't like Soma, and refuses to

> > prescribe it, even though it's the ONLY muscle relaxer that I know helps,

> > which is very frustrating.

> >

> > So right now, I'm in the process of checking out another pain doctor who

> > just moved into the area, and have made an appointment with him for a

> > consultation. Ironically, he moved into the office my current pain doctor

> > just moved out of, and it's a much nicer, and less clinical feeling,

> place.

> > That's one thing I've noticed about my current pain doctor....he's become

> > more clinical and distant as of late. He used to offer conscious sedation

> > at

> > his old practice, now everything, even RFA's, which are excruciatingly

> > painful, are done with just a local and no warning about how bad they are

> > going to hurt. This new guy also did a fellowship in minimally invasive

> > spinal treatments, which definitely got my attention. I also have an

> appt.

> > with a migraine specialist coming up, and maybe, just maybe, one of them

> > won't have such issues with Soma! I just can't fathom why a doctor would

> > refuse to presribe a medication knowing it's the only one that works.

> >

> > Okay, well, that's me in a nutshell. I have no doubt I've forgotten

> things

> > here and there, as not all fibro symptoms, like the fibrofog, have left

> me.

> > I look forward to getting to know everyone better, and hopefully being

> able

> > to contribute where I can!

> >

> > Jen

> >

> > No virus found in this incoming message.

> > Checked by AVG - www.avg.com

> > Version: 9.0.901 / Virus Database: 271.1.1/3712 - Release Date: 06/18/11

> > 13:34:00

> >

Posted June 19, 2011 · June 19, 2011

There are a LOT of Soma ODs, actually.mostly in combination with

Oxycontin/Codone. Many pro wrestlers that have died WAY too young by

ODing did so on Soma and Oxy... But even if there is a danger, it's up to

the PATIENT to know to take their medication AS DIRECTED. Part of the

problem is that Soma potentiates narcotics and therefore the combination of

Soma and a Narcotic are STRONGER than either alone.

I've tried many different muscle relaxers and they just don't WORK. I've

even tried things like Valium that have muscle relaxing properties.but they

don't work. It's so frustrating to HAVE a medication that works and be so

limited. It's not like I want 20 a day..right now he gives me ONE Soma a

day..and that is not sufficient. He used to have me on 3 a day, and THAT

worked well..but he got scared that I was on " too much " and lowered me.

Right now I'm on 30MG MS Contin twice a day, up to four 5mg Oxycodone a day

and ONE Soma a day as well as my BiPolar Med, Lamotrigine. And it's NOT

working as well as I would like.I rarely get under a 5-6 in pain and usually

live at 6-7 with my medication. Before my insurance stopped covering

OxyContin, I was on 30mg twice a day and keeping my pain down to a 3-4...but

the MS Contin us not as good, but he doesn't believe it..

Sorry for going on.it's frustrating and tonight is worse..I had to clean

the carpets today, so I've been SAVING the soma so I could take one this

morning and one at bedtime..and my body is SCREAMING at me...

Marta

From: Hugs-N-Pain [mailto:Hugs-N-Pain ] On

Behalf Of nettazig

Sent: Sunday, June 19, 2011 8:35 PM

To: Hugs-N-Pain

Subject: Re: New member

Marta,

You really must be like me when it comes to muscle relaxers. Flexeril,

Zanaflex, Parafon Forte, and I can't remember what else were about like

taking a placebo for me too. Several others I just can't take. Norflex makes

me sick to my stomach, and Skelaxin, my most recent one, I think is part of

the pain escalation problems I'm having now.

You're right, of course, that a lot of drugs, even OTC ones, can be misused

and abused. If not, why would so many of them be behind the pharmacy

counter? I've yet to hear a horror story about anyone ODing on Soma though.

I guess maybe I live in too small of a town for that. All I hear about in

this area are Oxycontin and Heroin....wouldn't you say those are much more

of an abuse and OD risk than Soma? Oh, by the way, check into Ohio and their

new Prescription Drug Task Force, and all of their new policies. You'll

forget you are in the US.

My PM is back from vacation tomorrow, and I have an appointment in the

morning. I would almost feel sorry for him if I hadn't spent a whole week

suffering while he and my doctor screwed around going back and forth about

what, if anything, they were going to prescribe me for the pain. Yes, seven

actual whole days. He's going to be very lucky if I can muster up a civil

attitude as bad as I still feel! I will have to post afterwards and let ya

know how it goes.

Jen

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.901 / Virus Database: 271.1.1/3712 - Release Date: 06/19/11

13:33:00

Posted June 20, 2011 · June 20, 2011

I need input... My dr is wanting to put me on a pain patch... transbural I

think. Is anybody on it?

Subject: RE: Re: New member

To: Hugs-N-Pain

Date: Sunday, June 19, 2011, 11:29 PM

Â