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Meinuk
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« on: February 10, 2014, 03:58:42 PM »

My ESRD is due to second generation Polycystic Kidney Disease (PKD).  I have been dealing with the side affects of PKD all my life. (infections started when I was in preschool) So, I consider myself a "semi professional" patient - I have been dealing with multiple doctors appointments and procedures for as long as I can remember.  It's pretty easy for me to write about my medical issues, and if writing about the process helps other when they are dealing with medical issues, well, it is a win/win.  I know that when I read Epoman's NxStage training diary, it made home dialysis easier for me. So here are my Adventures in Skin Cancer.

When my dermatologist called me today and told me the results of my skin biopsy, I still felt lucky, it is early and it is treatable, and I don't have breast cancer (I do have atypical lobular hyperplasia) , I don't have uterine cancer (I have treatable polyps), but when I was at my dermatologists for my semi-annual skin check, a small cut that I had on the bridge of my nose had grown into squamous-cell carcinoma. 

Just the past November, while reading in bed, I dropped my iPad on my nose (I was wearing glasses) and the small cut never healed, it actually scabbed and got thicker.  My dermatologist told me that many cancers develop from a wound as it heals.  I never knew that, but I was thrilled that I was having my skin check so soon after I cut myself.  That really is something that I would have ignored - now I know better.

It is a very small scab on the let side of the bridge of my nose, and the sooner I have MOHS surgery to remove all of the cancerous tissue on the surface and underneath, the sooner the cancer will be gone... for now.

Here's the timeline:
Link to Photo Album (I'll add pics in each step pf the process):
WARNING: GRAPHIC!  https://plus.google.com/photos/112566325351369470093/albums/5978930282881287649?authkey=CL-MmvLgx9G1Tg

Tuesday February 4th: Normal semi-annual post transplant skin check: I get undressed, and my dermatologist reviews every cm of my skin and hair while her assistant makes notes on any abnormalities.  It really is a quick scan.  You lay on the table and she goes over the front of your body, Including hair and hair line, literally form the top of your head to the tips of your toes and everything in between, including your genital area, then you stand up and she reviews the back of your body. It's quick and painless and could save your life.

Note: tattoos are noted as "I can't do a complete exam, as there are tattoos that obscure the viewing of the dermis" - which translates into, if you have a tattoo, there could be a chance of a dermatologist missing a lesion - so really pay attention to that part of your skin - look for any changes.   

After examining my body, she concentrated on my nose, and had her assistant take a picture of the "scab" (it is best that the surgeon sees the original spot before it is removed, sometimes the healing can obscure the original area) Then, after a brief sting of lidocaine, my dermatologist took a quick biopsy of the small suspicious "scab" on the left side bridge of my nose.

My dermatologist sliced the scab off superficially with a scalpel, then popped it into a specimen container in seconds, she put a small round band-aid over it, and the biopsy was done - in seconds.  "We're ruling out basel cell, I'll call you no matter what next week".

Monday, February 10th: My dermatologist called, it's squamous-cell carcinoma, best treated with MOHS surgery, to keep as much skin as possible, and I should book the Surgery and the Plastic surgeon so that they are together and can do it all in one session.  My initial consults with the dermatological surgeon and plastic surgeon are the week of 2/24, then we will book the procedure for an upcoming Friday. Pictures and more to come from my adventures in skin cancer....

Friday, March 21, 2014: The procedure: Tumor be GONE!

Today was the day that I had the MOHS procedure. People, when I woke up this morning, it was a TINY, TINY bump.  I was embarrassed that I was spending so much money on a MOHS surgeon and a plastic surgeon.  Really, it was just a small bump on the bridge on my nose.  Was I being a New Yorker and taking this to the extreme?  (turns out, NO)

I almost cancelled, it has been a rough week.  My friend  Kathe http://www.nephrologynews.com/articles/110101-home-hemodialysis-advocate-kathe-lebeau-dies died, I am speaking in St. Louis next week, and well, it was just a tiny bump (like a pimple).

As I type this, I have 19 stitches in my face, (lifetime high), my left eye is black and blue, and I have a skin graft.  Lesson learned.

The MOHS Procedures and closing the incision:

Three weeks prior, I met with the plastic surgeon so that she could look at the lesion and discuss the closing surgery, everything that could go right (simple stitches) and everything that could go wrong (OR for skin graft harvest and closure)

Two weeks prior, I met with the surgeon who would be doing the MOHS procedure, he gave me a booklet on what to expect, and coordinated with the plastic surgeon for a day when they would both be at the clinic for him to remove the lesion, and she would close the wound.

Friday, March 21, 2014:  All in all the MOHS procedure went quickly (only 2 surgical excisions before there were clean margins) I got to the clinic at 7:15.  There were a bunch of us there for MOHS, four with procedures on our noses, one on their finger. (At 47, I was the youngest by far)

A great staff brought me into a procedure room, took my vitals, prepped me, did my informed consent, marked the area, laid out the mayo stand, and sat with me while we waited for the MOHS surgeon.  He came in, discussed the procedure with me, we chatted, and then he gave me a few injections of local anesthesia (like a tiny bee sting), he left the room for 20 mins so that it could numb me up.

He came back in, I was draped, and he quickly excised the first very small area, laid it our for pathology.  I was bandaged with a pressure bandage (I had bled, and he used cautery to close the bleeding vessels) and then I was gently escorted to the waiting are to sit and amuse myself while we waited to see if pathology could say that we had "clear margins": a clear area of healthy tissue that was cancer free. Sigh. An hour later, I was still numb, and there were still cancer cells deep in the area.

MOHS Round Two.  I was still numb, prepped and draped.  We chatted about skiing, and then the surgeon went deeper to get to the root of the cancer cells. I bled more this time, but he and his team cleaned me up and after cauterizing, put on another pressure bandage.

Then I went back to the waiting area, ate my yoghurt (it was 10:30 am I had been there since 7:15) and waited.  BY 11, SUCCESS.  Clean margins.   I was brought to the amazing plastic surgeon, she assessed the area, we took pictures, and then she harvested some skin form my frown line (yes, I have a frown line. Frowning is my normal state of being) Nineteen stitches and one black eye later, it is over.  I get my stitches out in a week.  If scarring is a problem, we can do some laser therapy. It was all over in 4 hours, and then I went back to work.  I told everyone at work that my beloved coworker (who also has a kidney transplant) punched me.

The moral of the story, check your skin every six months, and if you notice anything unusual (like me, a cut that didn't heal) go to your dermatologist and get it checked out.

April 4 Two weeks out and I am healed.  It is just a thin red line on my forehead.  Feels weird, but all is well.  The disturbing part of this whole episode is that when I had my transplant clinic visit this week, my Neph was alarmed with the location of the lesion, and he is suggesting that I switch from prograf (tacrolimus) to Rapamune (sirolimus).  All of a sudden all of these new lumps and bumps many be related to the drugs.  But my creatinine is <1, and I feel great.  So I have to decide. 

I am feeling like at 5 years out (time flies when you are running around like a mad woman) with my transplant, I am thinking that I am ok with the semi-annual cancer scare.  I have a working kidney, and I made the descion that this was my last go 'round, so unless I have a big revelation, I am thinking that I am going to leave it all alone, not switch meds, do all the testing that is reccommended, and just live my life.

I'll update this post as new lesions appear. (I've been told that the chances are strong that there are others waiting to "erupt")

Hey, every scar tells a story... I've got many chapters to go before that book is finished.
« Last Edit: April 04, 2014, 01:31:51 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #1 on: February 10, 2014, 07:43:43 PM »

What is MOS?
Good luck - hope they get it all with minimal scarring.
 :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Meinuk
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« Reply #2 on: February 11, 2014, 04:42:17 AM »

Karol, it was a typo, MOHS is a type of micro surgery. I'm not too worried about scarring, my face is already a road map of dog bites and skiing accidents.  Just another story to tell...

From Wikipedia:
http://en.wikipedia.org/wiki/Mohs_surgery

Mohs surgery, also known as chemosurgery, developed in 1938 by a general surgeon, Frederic E. Mohs, is microscopically controlled surgery used to treat common types of skin cancer. During the surgery, after each removal of tissue, while the patient waits, the pathologist examines the tissue specimen for cancer cells, and that examination informs the surgeon where to remove tissue next. The surgeon performing the procedure is also the pathologist reading the specimen slides. Mohs surgery is one of the many methods of obtaining complete margin control during removal of a skin cancer (CCPDMA – complete circumferential peripheral and deep margin assessment.[1][2][3][4]) using frozen section histology.[5][6] CCPDMA or Mohs surgery allows for the removal of a skin cancer with very narrow surgical margin and a high cure rate.
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #3 on: February 11, 2014, 06:12:45 AM »

Wow, I so need to get my skin checked out. I do worry about scarring. That's why a few years ago when the dermatologist said that the spot on my nose looked like pre-squamous cells, rather than get a biopsy I just asked if it could wait and he said yes. I need to get a biopsy done and just face this already (HA!HA! "face" it!) If they do have to remove cancer I hope to get the MOHS surgery as well, but I am fairly certain they only do that down in London so it will be a bit of an ordeal, specially if I have to stay the night.

I'll be following your journey with interest, Meinuk. I hope it's a painless and successful one, and I will likely be following you down this path soon. Best of luck!
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MooseMom
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« Reply #4 on: February 11, 2014, 12:19:04 PM »

I've already learned so much from this thread.  Thanks, Meinuk.
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« Reply #5 on: February 11, 2014, 12:55:30 PM »

I see my dermatologist every year for a go-over of my skin.  I've had many many things liquid nitrogened off or excised and sent for further testing.  Nothing has been serious although some have come back as pre cancerous and I apparently have many Bowen's disease rough spots that we attend to ASAP. I wear sunscreen every day and gloves to garden in. Besides the fact of my transplant and immunosuppressants, my Mum died at 46 from melanoma and I'm very fair like she was.  I like the regularity of the annual checks for my peace of mind. 

Great info Meinuk and best of luck with the MOHS surgery.  You're a champ.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #6 on: February 12, 2014, 08:47:08 AM »

Thank you for the information!
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Meinuk
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« Reply #7 on: March 21, 2014, 03:52:34 PM »

Tumor be GONE!

Today was the day that I had the MOHS procedure. People, when I woke up this morning, it was a TINY, TINY bump.  I was embarrassed that I was spending so much money on a MOHS surgeon and a plastic surgeon.  Really, it was just a small bump on the bridge on my nose.  Was I being a New Yorker and taking this to the extreme?  (turns out, NO) 

I almost cancelled, it has been a rough week.  My friend  Kathe http://www.nephrologynews.com/articles/110101-home-hemodialysis-advocate-kathe-lebeau-dies died, I am speaking in St. Louis next week, and well, it was just a tiny bump (like a pimple).

As I type this, I have 9 stitches in my face, (life time high), my left eye is black and blue, and I have a skin graft.  Lesson learned. 

Here is the timeline:

Three weeks prior, I met with the plastic surgeon so that she could look at the lesion and discuss the closing surgery, everything that could go right (simple stitches) and everything that could go wrong (OR for skin graft harvest and closure)

Two weeks prior, I met with the surgeon who would be doing the MOHS procedure, he gave me a booklet on what to expect, and coordinated with the plastic surgeon for a day when they would both be at the clinic for him to remove the lesion, and she would close the wound.

I have pictures, they are really graphic, I'm thinking that I will link to an album, so that you have been warned how graphic they are. (GRAPHIC. WARNING Album link https://plus.google.com/photos/112566325351369470093/albums/5978930282881287649?authkey=CL-MmvLgx9G1Tg)

Today:  All in all the MOHS procedure went quickly (only 2 surgical excisions before there were clean margins) I got to the clinic at 7:15.  There were a bunch of us there for MOHS, four with procedures on our noses, one on their finger. (At 47, I was the youngest by far)

A great staff brought me into a procedure room, took my vitals, prepped me, did my informed consent, marked the area, laid out the mayo stand, and sat with me while we waited for the MOHS surgeon.  He came in, discussed the procedure with me, we chatted, and then he gave me a few injections of local anesthesia (like a tiny bee sting), he left the room for 20 mins so that it could numb me up.

He came back in, I was draped, and he quickly excised the first very small area, laid it our for pathology.  I was bandaged with a pressure bandage (I had bled, and he used cautery to close the bleeding vessels) and then I was gently escorted to the waiting are to sit and amuse myself while we waited to see if pathology could say that we had "clear margins": a clear area of healthy tissue that was cancer free. Sigh. An hour later, I was still numb, and there were still cancer cells deep in the area. 

Round Two.  I was still numb, prepped and draped.  We chatted about skiing, and then the surgeon went deeper to get to the root of the cancer cells. I bled more this time, but he and his team cleaned me up and after cauterizing, put on another pressure bandage.

Then I went back to the waiting area, ate my yoghurt (it was 10:30 am I had been there since 7:15) and waited.  BY 11, SUCCESS.  Clean margins.   I was brought to the amazing plastic surgeon, she assessed the are, we took pictures, and then she harvested some skin form my frown line (yes, I have a frown line. Frowning is my normal state of being) Nine stitches and one black eye later, it is over.  I get my stitches out in a week.  If scarring is a problem, we can do some laser therapy. It was all over in 4 hours, and then I went back to work.  I told everyone at work that my beloved coworker (who also has a kidney transplant) punched me.

The moral of the story, check your skin every six months, and if you notice anything unusual (like me, a cut that didn't heal) go to your dermatologist and get it checked out. 

« Last Edit: March 21, 2014, 04:27:42 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
MooseMom
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« Reply #8 on: March 21, 2014, 04:01:43 PM »

Thank you so much for posting this.  So much valuable information and advice.  :thumbup;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Meinuk
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« Reply #9 on: April 04, 2014, 01:28:54 PM »

April 4 Two weeks out and I am healed.  It is just a thin red line on my forehead.  Feels weird, but all is well.  The disturbing part of this whole episode is that when I had my transplant clinic visit this week, my Neph was alarmed with the location of the lesion, and he is suggesting that I switch from prograf (tacrolimus) to Rapamune (sirolimus).  All of a sudden all of these new lumps and bumps many be related to the drugs.  But my creatinine is <1, and I feel great.  So I have to decide. 

I am feeling like at 5 years out (time flies when you are running around like a mad woman) with my transplant, I am thinking that I am ok with the semi-annual cancer scare.  I have a working kidney, and I made the descion that this was my last go 'round, so unless I have a big revelation, I am thinking that I am going to leave it all alone, do all the testing that is reccommended, and just live my life.

I'll update this post as new lesions appear. (I've been told that the chances are strong that there are others waiting to "erupt")

Hey, every scar tells a story... I've got many chapters to go before that book is finished.
« Last Edit: April 04, 2014, 01:32:40 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
MooseMom
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« Reply #10 on: April 04, 2014, 01:51:43 PM »

Meinuk, I'm on tac and I'm only 2 years out, but in the last, say, 8 months, I've been finding some skin oddities.  They are mostly skin tags, and I don't see anything that I'm concerned about, but I'll keep getting annual checks.  I knew that tac could cause skin changes, so before anyone on my tx team even mentioned it, I made an appointment last year with a dermatologist.  She removed one mole that turned out to be benign.  But like I said, now that I'm noticing a few changes on my skin, I'll be seeing her again soon.

I'm glad you have healed well and quickly!!

I'm really interested in hearing what you finally decide about switching drugs.  I'd be really hesitant to switch when the new kidney was still working well, but we all have to weigh the pros and cons.  Good luck with your decision!

Again, thanks for starting this thread.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #11 on: April 08, 2014, 12:01:28 AM »

After they switched me to sirolimis I tried to find some information on how well it works verses tacro. I couldn't really find much, but I was left with the general impression that tacro seemed to be better at preventing rejection. So unless there was something really wrong I wouldn't want to switch.

That said, I like taking the sirolimis better. I take it once a day in the morning and the side effects are less.

And just as an interesting side note, the drug was developed from a micro organism that is found only in the soil on Easter Island.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
obsidianom
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« Reply #12 on: April 11, 2014, 09:22:18 AM »

Yoy may all find this interesting.

Prevention of transplant rejection[edit]
 
The chief advantage sirolimus has over calcineurin inhibitors is its low toxicity toward kidneys. Transplant patients maintained on calcineurin inhibitors long-term tend to develop impaired kidney function or even chronic renal failure; this can be avoided by using sirolimus instead.

a plethora of studies indicate that, when dosed appropriately, sirolimus can enhance the immune response to tumor targeting[19] or otherwise promote tumor regression in clinical trials.[20] Sirolimus seems to lower the cancer risk in some transplant patients.[21]
« Last Edit: April 11, 2014, 09:28:23 AM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
obsidianom
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« Reply #13 on: April 11, 2014, 09:53:02 AM »

Abstract


BACKGROUND:

Whether sirolimus is useful in the prevention of non-melanoma skin cancer (NMSC) remains unclear and we therefore performed this meta-analysis of randomized controlled trials to test the hypothesis that Sirolimus-based immunosuppression is associated with a decrease in NMSC.

METHODS:

The main outcomes were NMSC, squamous-cell carcinoma and basal-cell carcinoma. The pooled risk ratio (RR) with its 95% confidence interval (95%CI) were used to assess the effects.

RESULTS:

5 randomized trials involving a total of 1499 patients receiving kidney transplantation were included. Patients undergoing Sirolimus-based immunosuppression had much lower risk of NMSC (RR = 0.49, 95%CI 0.32-0.76, P = 0.001). Subgroup analyses by tumor type showed that Sirolimus-based immunosuppression significantly decreased risk of both squamous-cell carcinoma (RR = 0.58, 95%CI 0.43-0.78, P < 0.001) and basal-cell carcinoma (RR = 0.56, 95%CI 0.37-0.85, P = 0.006). The quality of evidence was high for NMSC, and moderate for squamous-cell carcinoma and basal-cell carcinoma. No evidence of publication bias was observed.

CONCLUSION:

High quality evidence suggests that Sirolimus-based immunosuppression decreases risk of non-melanoma skin cancer, and Sirolimus has an antitumoral effect among kidney-transplant recipients
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Meinuk
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« Reply #14 on: April 15, 2014, 04:10:26 PM »

THANK You for the citations - I really appreciate it, and it really adds to this thread. 

We've discussed it a lot, I am just not ready to make the switch. My big question is why then, if Sirolimus is such a better choice, why did my program go with prograf?

My other hang up is that switching tx rx would mean a lot of blood work and lab time, but I have a lot of travel coming up, and if there is a problem, a years work of plans would have to be scrapped. (selfish I know)

I will revisit the switch in the Fall.
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

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MooseMom
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« Reply #15 on: April 16, 2014, 09:23:23 AM »

We've discussed it a lot, I am just not ready to make the switch. My big question is why then, if Sirolimus is such a better choice, why did my program go with prograf?

My other hang up is that switching tx rx would mean a lot of blood work and lab time, but I have a lot of travel coming up, and if there is a problem, a years work of plans would have to be scrapped. (selfish I know)

I will revisit the switch in the Fall.

I've wondered this, too.  Why is prograf the choice of most tx programs?  There must be a reason sirolimus isn't more widely chosen.

Enjoy your travels, have fun this summer and let us know come the fall what you decide to do.
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« Reply #16 on: April 16, 2014, 01:15:27 PM »

We've discussed it a lot, I am just not ready to make the switch. My big question is why then, if Sirolimus is such a better choice, why did my program go with prograf?

My other hang up is that switching tx rx would mean a lot of blood work and lab time, but I have a lot of travel coming up, and if there is a problem, a years work of plans would have to be scrapped. (selfish I know)

I will revisit the switch in the Fall.

I've wondered this, too.  Why is prograf the choice of most tx programs?  There must be a reason sirolimus isn't more widely chosen.

Enjoy your travels, have fun this summer and let us know come the fall what you decide to do.

I think sirolimus is still relatively new. I do know that generics were not approved until Jan of this year, so maybe that is a part of it?  The government and the insurance industry are always pushing for generics, and sometimes things don't become widely used until that happens.
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June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
jeannea
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« Reply #17 on: April 17, 2014, 05:32:54 AM »

If I remember correctly: When sirolimus was developed, they did testing with clinical trials. It was found to be a better choice for liver transplants than for kidney transplants. Statistically, kidney transplants had better outcomes with tacrolimus than with sirolimus. So right now with the research available, they would prefer to start you on tacrolimus. If you can tolerate it, the statistics say you will do "better" than on sirolimus.

Now of course the problem is that everyone is an individual. Some will do better on sirolimus. Some will have problems with tacrolimus. That's why they monitor us so closely at the beginning. Sirolimus is not side effect free either. All programs have to make decisions what their treatment protocol will be. Most have decided that it is best to try tacrolimus first.
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Ninanna
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« Reply #18 on: April 18, 2014, 02:39:29 PM »

I also forgot to add that sirolimis can slow down the healing process, which would be a concern right after surgery and why a transplant team might not want to start with sirolimus first.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
MooseMom
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« Reply #19 on: April 18, 2014, 02:44:08 PM »

Thanks for those replies, Ninanna and jeannea!  I have my annual post-tx check up in a few weeks, and if I remember, I'll ask my neph about this, just out of curiosity.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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