Any experience with Muse?

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Chatuge
Regular Member


Date Joined Mar 2010
Total Posts : 37
   Posted 5/1/2010 10:30 AM (GMT -6)   
The Dr gave me a prescription for Muse 250 mg to begin in 3 weeks from the cath removal and repeated every other day.  Has anyone had any experience with this?
Age 67,married to the same one 45 years, PSA's: 10/05=2.35, 4/06=2.59, 7/07=2.94, 7/08=3.91, 10/08=4.42, 7/09=6.73, 1/10=7.68.  First 12-needle biopsy 2/09 revealed no cancer.  Second 12-needle biopsy 2/10 w/results received 02-16-10 revealed rt lateral base adenocarcinoma with approx 17% of submitted tissue involved, left base and left lateral mid diagnosed  as Prostatic Intraepithelial Neoplasia (PIN), High Grade, with the remaining 9 tissue samples ok.  My Gleason's score is a 7 (grades 3+4).  I considered HIFU clinical trials at UNC Chapel Hill however they accept nothing over a 3+3.  First appt with diVinci surgeon 3-22-2010.  Surgery accomplished 4-20-2010 by Dr Shah at St Josephs in Atlanta.  Cath removed on 4-30-2010.  Post op biopsy:  size of prostrate-87.6 grams, Gleason 3+3 with tertiary pattern 4, rt seminal vessel involved, margins uninvolved, tumor bilateral (predominately right side) and "moderate amount" involvment of the gland (explained as less than 50%).  A blind biopsy is also being sent to Johns Hopkins.
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 5/1/2010 10:43 AM (GMT -6)   
I gave it a try. Did not work for me. Made me very uncomfortable. Burned like hell. Used it 2 times and decided. This is a no go for me. In addition it did nothing for the ED!

I have moved on to injections. So much better:)
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 5/1/2010 1:55 PM (GMT -6)   
MUSE is barbaric at best. I can't believe Dr's still prescribe it. Injections are better, by far. Use Trimix Gel if you can't inject. Use a pump twice a day... good luck. Maybe you'll be one of the few men for whom MUSE doesn't hurt like hell. Don't mean to scare you, but there are far less risky ways to work in the ED problem.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/1/2010 2:05 PM (GMT -6)   
Never used it, but from what I researched on MUSE, it is often a painful experience, even the insertion down your urethra can be a problem for some men, and it has a low sucess rate on the ED side even if you can get past applying it.

I wonder how effective the Trimix Gel is, anyone out there used that?
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 5/1/2010 7:34 PM (GMT -6)   

I used,it is a littler unconstable but it work for me.

The only thinkg I did not like was, that after I finish I need to put ice cube to bring it down.


DIAGN=46 YEARS
GLEASON=3+3
FATHER HAD PC,THEN I THEN MY BROTHER STILL HAS TWO BROTHER PC FREE.
MARRIED,TWO CHILDREN.AGE 13 AND 8.
LAPROSCOPY SURGERY 6/2005
PATOLOGY REPORT.
GLEASON=3+3
TUMOR VOLUME=5%
LYMPHOVASCULAR INVASION=NEG
PERINEURAL INVASION=POSI
TUMOR MULTICENTRICITY=NEG
EXTRAPROSTATIC INVASION=NEG
SEMINAL VESICLES BOTH=CLEAN
MARGIN ALL=NEG
PT2ANXMX
DEVELOP SCART TISSUE AND NEEDED A SECOND SURGERY BECAUSE COULD NOT URINATE,
PSA 6/05=0.04,0.04,0.04,6/06,0.04,0.04,0.04,6/07,0.04,0.04,0.04,6/08,0.04,0.04,1/09
0.04,10/09,0.04
 


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 5/1/2010 9:41 PM (GMT -6)   
Hey David,

How many times do I have to update my Trimix Gel thread before you see it?? (On the other hand you've been pretty busy with lots of distressing stuff not to be worried about piddling stuff like gel and muse).

Anyways, my latest update on trimix gel was: it worked really fine @100 percent levels as long as ...<drum roll please >
I added a 500 mcg MUSE to boost it!! Pretty funny and ironic yes?

(Actually what that says to me is I need a even stronger prescription than the 1000/300/100 mix (which
is the strongest standard mix for Trimix).

When I run out of the current batch of Gel will try getting something stronger Maybe more Papaverine .. not sure.

fun stuff ...

jim
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery ,Nerve sparing, 1 day in hospital.
02/18/09 Cath out -- passed 1 cm oblong bladder stone (not kidney!).
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
04/09, 07/09, 10/09, 01/15/10 PSA <0.1
03/2009 Levitra@20mg / Viagra@100mg/Cialis@20mg -- (nocturnal stirrings started 02-03/2010).
08/09-09/09,02-03/10 MUSE@1000mcg 80-90% (with some ache )
10/09-11/09 TrimixGel@(500/300/100mcg): 60,70,80%,
02/10-03/10 TrimixGel@1000/300/100mcg - 80-90% - just @ usefulness.
Gel + MUSE 500mcg -- 100% for 30-60 mins and 80-90% for hours after that).

Post Edited (JimStars) : 5/1/2010 9:43:57 PM (GMT-6)


chitown
New Member


Date Joined Apr 2010
Total Posts : 14
   Posted 5/14/2010 7:26 AM (GMT -6)   
Chatuge - I am scheduled for surgery with Dr Shah later this month and he is recommeding the use of MUSE. This i believe is something he started doing only couple of months ago. Prior to that the protocol was tablets and pump. Very curious about your experience with the surgery, Dr Shah, recovery, use of Muse and any other advise and feedback you can give.

Thanks in advance

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 5/14/2010 8:46 AM (GMT -6)   
He didnt even mention Muse to me after my surgery in May of 09 so not sure what has changed or why. Hope that it does work for you as my ED continues one year later, but I have now had radiation tx as well.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


Chatuge
Regular Member


Date Joined Mar 2010
Total Posts : 37
   Posted 5/14/2010 2:47 PM (GMT -6)   
Thanks everyone for the responses--for chitown-I am now 24 days out of surgery and in a lot of pain in the rectal area, so much that I called Dr Shahs and he prescribed a cortizone suppository and suggested I see my Gastrointeroligist who also prescribed an external cream.  On the positive side, on the continent issue, I am essentially dry.  On the ed issue, Icalled Dr Shah and said I did not like the idea of the Muse and he prescribed pills Levitra-and the pump.  Too muchpain down there to try any of that yet.  From what everyone-with experience- on here says, we are all different and heal at different rates butt (pun intended) I sure am anxious for some healing back there!!
Age 67,married to the same one 45 years, PSA's: 10/05=2.35, 4/06=2.59, 7/07=2.94, 7/08=3.91, 10/08=4.42, 7/09=6.73, 1/10=7.68.  First 12-needle biopsy 2/09 revealed no cancer.  Second 12-needle biopsy 2/10 w/results received 02-16-10 revealed rt lateral base adenocarcinoma with approx 17% of submitted tissue involved, left base and left lateral mid diagnosed  as Prostatic Intraepithelial Neoplasia (PIN), High Grade, with the remaining 9 tissue samples ok.  My Gleason's score is a 7 (grades 3+4).  I considered HIFU clinical trials at UNC Chapel Hill however they accept nothing over a 3+3.  First appt with diVinci surgeon 3-22-2010.  Surgery accomplished 4-20-2010 by Dr Shah at St Josephs in Atlanta.  Cath removed on 4-30-2010.  Post op biopsy:  size of prostrate-87.6 grams, Gleason 3+3 with tertiary pattern 4, rt seminal vessel involved, margins uninvolved, tumor bilateral (predominately right side) and "moderate amount" involvment of the gland (explained as less than 50%).  A blind biopsy is also being sent to Johns Hopkins.
 


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 5/14/2010 2:49 PM (GMT -6)   
Hope it gets better soon Chatuge as pain is only fun for a few seconds. Glad you got the pills, not sure why he went to muse as it sounds like I wouldnt want that either.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


chitown
New Member


Date Joined Apr 2010
Total Posts : 14
   Posted 5/14/2010 2:56 PM (GMT -6)   
Right...wondering why the push for MUSE recently...many aggressive marketing by the pharma company that makes MUSE.
I was planning the pill and pump route and see of the doctor is ok on that. from what i have read the injection or gel also work well so will have that discussion too,

any advise on when to start the pill/gel/injection combo and other advise for recovery

Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 5/14/2010 3:19 PM (GMT -6)   
I always thought MUSE was the third-to-try after Pills and Pump. It is for my Doc.

If pills don't work and you don't like the pump and you don't like Muse, then you could go stick yourself ...

But you do have the extra option of Trimix Gel too instead of Trimix injections.

The Gel is probably a lot less reliable than injections but not much data out there.
(but it is a lot easier to use and you don't even need to have the Doc show you how to do it -- no wasting a shot in the office).

Trying a six pack of Gels will at least give you some idea if it might be any good.
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery ,Nerve sparing, 1 day in hospital.
02/18/09 Cath out -- passed 1 cm oblong bladder stone (not kidney!).
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
04/09, 07/09, 10/09, 01/15/10 PSA <0.1
03/2009 Levitra@20mg / Viagra@100mg/Cialis@20mg -- (nocturnal stirrings started 02-03/2010).
08/09-09/09,02-03/10 MUSE@1000mcg 80-90% (with some ache )
10/09-11/09 TrimixGel@(500/300/100mcg): 60,70,80%,
02/10-03/10 TrimixGel@1000/300/100mcg - 80-90% - just @ usefulness.
Gel + MUSE 500mcg -- 100% for 30-60 mins and 80-90% for hours after that).


chitown
New Member


Date Joined Apr 2010
Total Posts : 14
   Posted 5/14/2010 3:41 PM (GMT -6)   
Chatuge - how was your experience with dr shah and his staff. any suggestion to getting the best out of them for my surgery and follow-up

jimstars - i believe the docs are getting much more aggressive in rehab of penis muscle. if for the first few months they are not used then the atrophy starts and is harder to recover later. that the reason muse and injections are first line as they bypass the nerves to get blood in the penis. the pill still need nerves to work and the nerves are fatigued after the surgery and recover slowly.

i think i will keep all three muse, gel and injection open and try them out along with the pills.

also why do you say gel is less reliable than injection..my insurance will cover muse, cialis...not sure of the gel

zampilot
Regular Member


Date Joined Aug 2009
Total Posts : 152
   Posted 5/14/2010 4:56 PM (GMT -6)   
"Muse 250 mg to begin in 3 weeks from the cath removal and repeated every other day."
That's probably much better for the E.D. than 5mg Cialis tx as I had. As for why Doc's prescribe MUSE, oh so "barbaric", the responsible Doc's start with the least invasive therapy. Pumps (can't fail, but not exactly "in the mood", they are for reconditioning) and/or pills (pills are invasive but we "live better through chemistry") being the first shot, then move to MUSE, then injections.
Time after surgery, age and a number of factors may be the trump card whether it gets up again on it's own, not just therapy.
I'm sitting at 15 months and things are getting better, very slowly, but better.

Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 5/14/2010 10:52 PM (GMT -6)   
Chatuge,

I caution that even though your Doc would prescribe every other day use, I am pretty sure your Insurance company will say otherwise and you will be lucky to get 4-6 MUSE packs every 30 days. I know my Godless Evil Medco has me down to 4 (although for a while they had allowed 6). Likewise for Cialis it was 15 x 5 mg ... not a heck of a lot when even full dose does not do much. Thank gawd for All Day, I always say.

So with that paltry MUSE prospect before you I can see why the Trimix injections are so popular -- you get a lot of shots per one prescription and even with needles etc it can be pretty cheap (thanks to high volume production due to Diabetes needs).

Oh one more thing: Go get your MUSE script filled RIGHT AWAY since they will not allow refill for another 30 days after. This way you'll have your first stash in-hand and then will get some more only one week after you start using them in 3 weeks. Work that system!
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery ,Nerve sparing, 1 day in hospital.
02/18/09 Cath out -- passed 1 cm oblong bladder stone (not kidney!).
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
04/09, 07/09, 10/09, 01/15/10 PSA <0.1
03/2009 Levitra@20mg / Viagra@100mg/Cialis@20mg -- (nocturnal stirrings started 02-03/2010).
08/09-09/09,02-03/10 MUSE@1000mcg 80-90% (with some ache )
10/09-11/09 TrimixGel@(500/300/100mcg): 60,70,80%,
02/10-03/10 TrimixGel@1000/300/100mcg - 80-90% - just @ usefulness.
Gel + MUSE 500mcg -- 100% for 30-60 mins and 80-90% for hours after that).

Post Edited (JimStars) : 5/14/2010 9:56:13 PM (GMT-6)


Chatuge
Regular Member


Date Joined Mar 2010
Total Posts : 37
   Posted 5/15/2010 3:48 PM (GMT -6)   
Chitown-Dr Shah's staff is A-1, no complaintsat all. I would also highly recommend a couple of nights in the Marriott next door to the hosp if you live very far away-I'm 2 1/2hours away.  Marriott gives the corporate rate for St Joseph patients-approx $60/night.  Jimstars-my MEDCO-through BC/BS will not pay for ANY of the stuff!!
Age 67,married to the same one 45 years, PSA's: 10/05=2.35, 4/06=2.59, 7/07=2.94, 7/08=3.91, 10/08=4.42, 7/09=6.73, 1/10=7.68.  First 12-needle biopsy 2/09 revealed no cancer.  Second 12-needle biopsy 2/10 w/results received 02-16-10 revealed rt lateral base adenocarcinoma with approx 17% of submitted tissue involved, left base and left lateral mid diagnosed  as Prostatic Intraepithelial Neoplasia (PIN), High Grade, with the remaining 9 tissue samples ok.  My Gleason's score is a 7 (grades 3+4).  I considered HIFU clinical trials at UNC Chapel Hill however they accept nothing over a 3+3.  First appt with diVinci surgeon 3-22-2010.  Surgery accomplished 4-20-2010 by Dr Shah at St Josephs in Atlanta.  Cath removed on 4-30-2010.  Post op biopsy:  size of prostrate-87.6 grams, Gleason 3+3 with tertiary pattern 4, rt seminal vessel involved, margins uninvolved, tumor bilateral (predominately right side) and "moderate amount" involvment of the gland (explained as less than 50%).  A blind biopsy is also being sent to Johns Hopkins.
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 5/15/2010 4:34 PM (GMT -6)   
You may want to check to see how much it will cost you to get the Muse is your insurance does not cover. It is a bit expensive.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 5/15/2010 6:58 PM (GMT -6)   
Chatuge,

That is a bummer if they do not cover any at all -- Your Godless Medco is even more Godless than mine (or is BCBS calling the shots). As CVman says it is very expensive if you pay yourself -- over $150 for 4 or 6 MUSE someone had mentioned here.

That happens to be the same price as TRIMIX GEL -- about 150 for a 6 pack. Be sure to get the highest dose on Gel as it is less effective than the same dose of MUSE. Not sure why, something to do with the Gel delivery method maybe?

keep on, keepin on ...
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery ,Nerve sparing, 1 day in hospital.
02/18/09 Cath out -- passed 1 cm oblong bladder stone (not kidney!).
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
04/09, 07/09, 10/09, 01/15/10 PSA <0.1
03/2009 Levitra@20mg / Viagra@100mg/Cialis@20mg -- (nocturnal stirrings started 02-03/2010).
08/09-09/09,02-03/10 MUSE@1000mcg 80-90% (with some ache )
10/09-11/09 TrimixGel@(500/300/100mcg): 60,70,80%,
02/10-03/10 TrimixGel@1000/300/100mcg - 80-90% - just @ usefulness.
Gel + MUSE 500mcg -- 100% for 30-60 mins and 80-90% for hours after that).


chitown
New Member


Date Joined Apr 2010
Total Posts : 14
   Posted 6/24/2010 2:42 PM (GMT -6)   
Chatuge, JimStars, all -

Happy to report surgery on 6/15 and recovery has gone extremely well.
Only have a bloated stomach as reminder pain.
The patholgy report was good with no positive margins and cancer cell less that 10%
Catheter came out yesterday and I am totally dry today

Next in line is use of MUSE in about 2 weeks.
I want to give it a serious try as what the doc has told me has been true 100% and got my trust.

What I read is use of MUSE with lidocaine is much better ,..any experiece
If MUSE does not work then injection is the next option

Chatuge - How has Cialis worked for you.
Any additonal suggestion for any on ED is welcome
My doc is not hot on any tabs at any time. Call its over medication!! Pretty much againist the stream of the mainstream
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