MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Anonymous
Replies 0

I had a biopsy performed for melanonychia in my thumb nail. This is the second biopsy that was conducted, during the first my doctor did not remove my nail and failed to biopsy the correct spot. The second time she removed the half of my nail with the streak and biopsied underneath. She let me know Monday that the pathology showed a focal point of pigment. She also stated that the spot was very subtle but she believed that she removed it all. I received the pathology report today, I guess I’m confused by the comments regarding the specimen. Can someone please help? Based on my doctor’s observation do I need to continue to follow this, is this result inconclusive? 

 

FINAL DIAGNOSIS:
1. Nail and nail matrix, matricectomy:
-- Nail matrix with focal pigment. (See Diagnosis Comment.)
-- No fungal organisms are identified on PAS-stained section.
Control worked appropriately.
DIAGNOSIS COMMENT:
No morphologic evidence of a melanocytic neoplasm is observed
however, interpretation is limited by the thin sample size. If this
represents a small portion of a larger pigmented lesion, we would
recommend close clinical follow-up and consideration for a larger
biopsy if clinically indicated.

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Anonymous's picture
Anonymous
Replies 8
Last reply 12/15/2017 - 9:22pm

Hey Warriors!!

Today was my 4th round of Pembro/PV-10 and I can report that the PV-10 appears to be doing its job well. It was concluded today that PV-10 has killed the tumor it was injected into and the tumor is now "mush" (which I think is medical jargon for necrotic). This is pretty exciting not only for me but potentially for others who might receive this intralesional later.

Injections were still given today (by the trial protocol, as long as there is something there, the injections will continue for the full 5 rounds. Only one more to go! The amount, which is determined by the size of the tumor, was much less today than in the previous 3 rounds. It still stings like a mother, but let it sting...its killing melanoma! 

I will not know about the other two lesions until scans next month but I will say that PV-10 has made a believer out of me. Now I pray that Pembro is working as hard. Its time to brace for the Pembro flu as I have come to call it.

Charley Mike Warriors, Charley Mike!!!

Tex

Tex

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Jubes's picture
Replies 3
Last reply 12/15/2017 - 8:57pm
Replies by: jennunicorn, iskitwo, Anonymous

Just wondering that if you are having pet scans every three months if you still have to do the regular Pap smears and mammograms and other screening for other common cancers? I keep getting reminders but it’s hard to get up the energy for more tests thanks

Anne-Louise 

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/15/2017 - 7:33pm
Replies by: Janner

Hi

i was recently diagnosed with a melanoma Insitu and the report said I need a WLE with 10mm clearance. 

The surgery has taken place and the histopathology report states there was no malignancy seen on surgical sample and there was a 3mm margin. 

this 3mm margin is really concerning me. I called th doctor and he said he’d taken more out but the skin shrinks a before it gets to the lab. I’ve never heard this before. Does anyone know about this. I’m thinking for peace of mind I should have more cut out but not sure how to go about this. 

Thanks. 

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jjk17's picture
Replies 1
Last reply 12/15/2017 - 4:28pm
Replies by: sister of patient

Hey all! Just wanted to drop in and say that I did get excepted into the trial and just patiently waiting to see when I will start. It is still a very scary thing to have to do, but I know this is the right thing for me to do. I just can't sit, watch and wait! I want to thank the ones who have reached out and gave me great advice and positive thoughts. We are all in this together!

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Scooby123's picture
Replies 5
Last reply 12/15/2017 - 4:23pm

Hi guys,

Hope you all as well has can be, just a update 6 rounds keydruda had first scan and tumours shrunk by half. Apart from aching joints trips to loo coping well. Head clear thank goodness.

 

Been a rough time lately with my mother in law just had a stroke, had a call from a gentleman a lovely lady I have known since I was in my first job ever she is 93 had a stroke and in a care home and been told she will not be going home. Her daughter has breast cancer and been told nothing more can do. 

So I have felt down quite a bit with all what's been going on and not enough days in week to do everything especially with working too.

i wish all of you a merry Xmas and hoping all to have a good new year.

Scooby ❤️

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Sarah 2345's picture
Replies 5
Last reply 12/15/2017 - 8:04am

Hi 

I found out on Tuesday that I have a melanoma insitu and it was cut out that afternoon. The doctor told me I was very lucky it was caught so early and it has 100% success rate. While this is the best case scenario I can’t stop crying and feeling so scared. 

I’m from the UK, red haur, fair, freckles and now live in oz (3 years). The past few years I’ve been very careful in the sun but growing up for years I sunbathed, use sun beds, have burnt and blistered so many times I’ve lost count  

I turned 40 last week -actually had the biopsies on my birthday! I have 3 very young children (1,3 and 5) and I’m so scared of something happening to me and me leaving them in this world. 

Whilst its great the melanoma was still insitu im so scared given my colouring and huge sun exposure that sone thing more serious is round the corner. You hear lots of stories of things more serious coming back and it’s just scaring me so much  I don’t want my kids growing up without a mum - I can’t cope with the thought and I’m a mess. 

I’m crying constantly and just can’t stop thinking about my kids. I need to go for 3/12 check ups but I’m worried that’s not enough. 

My my other question is that this melanoma was found by luck at a skin clinic - not a dermatologist. And the same guy cut it out. He’s a specialist GP. The report said clear margins but how do I know if clear enough. Should I ask to get more cut off? I’m trying to get in to a dermatologist but that won’t be for 2 months as so booked up here. 

Thank you for listening and any positive words so welcomed  

 

 

 

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Polymath's picture
Replies 26
Last reply 12/15/2017 - 12:04am

Aloha warriors, sorry for my absence from the board.  I needed time away from thinking about the melanoma and just get on with life.  

I just got results from my most recent scan, and I am celebrating a full year since my last surgery which cleaned house of my major tumors.  All clear, with no new progression.  I have been off all medications, for the year, and want to offer a message of hope.

Old-timers know I battled hard for four years.  I did it all.  Surgeries, radiation, targeted therapies, and immunotherapies.  It seemed nothing would stop the beast.  I was just beating it back, waiting for the next drug treatment approval.  Right up until my biggest surgery last December, which removed my spleen, engulfed with a grapefruit sized tumor, plus two other abdominal tumors, I had mostly non-stop progression. 

I have been lucky in that along with good care, my tumors have not attacked vital organs, but had non-stop invasive tumors pop up in many areas.  I have plenty of scars and damage, but here I am, feeling great when the statistics had me most likely dead by now.  It seems that although I was thought to be a non-responder to most everything, maybe, there is some lasting impact from the treatments.

Rather than get into any more details, I want to just thank those who supported me, and shared their wisdom and experience throughout these years.  If not for the advice I received here, I doubt I would be in this wondrous position.  I also feel so badly for those we lost, and hope their families are doing as well as possible. I hate this insidious beast.

I've been lucky, and have been my own advocate for my care.  Not fallen for the natural remedy peddlers who prey off of peoples fears.  I found a wonderful specialist who saved my life.  While this has just been one year, and I know I may need to go to battle again someday, I just want to wish all my brothers and sisters here, a wonderful holiday season.  Hang in there, be strong, and be well.

Gary

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In the Last Year, my brother had one Melanoma, and a severely atypical mole and melanoma in situ could not be ruled out. Along with that, I have had multiple moles biopsied and the last one is as follows:

INTERPRETATION FINAL DIAGNOSIS A. Right posterior shoulder: Irritated compound nevus, congenital type, focally extending to the deep edge of the specimen.

Being that there is no mole left to monitor and that the deep edge of the specimen is still involved, my questions is this: Do I need to have this re-excised to get clear margins? I know that it is a benign mole.  But there is not a mole there left to monitor, and it is in the deep margin therefore, I am unclear of what to do? Can a Mole that is benign turn into Melanoma or an Atypical mole? I am just very unclear of what I should do can someone please advise me. 

 

What would you do in this situation?

 

Thanks so much!

 

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ToddC's picture
Replies 4
Last reply 12/14/2017 - 6:12pm

Hi long term melanoma survivors. Time to chime in on the old MPIP board... let us know you are still alive and kicking!  I remember this board from years ago before it became run by the "MRF" which I'm not sure I believe in anymore but I'll avoid that discussion here.  I'm sure there are a lot of people like me that never accepted the drugs and found some natural ways to control this condition so let's hear your story again and give people here some hope.

I had stage 4 mel from arount 2008-2013 when some lifestyle changes I made seem to have made my condition go away and to my docs amazement it has not come back since. I recently had bloodwork and want to report back, no indicators of cancer and vitamin D level of 55. LdH below threshold, WBC and CRP is totally normal, everything looks perfect at age 53 now, thought I would die in 2013 but I'm still going strong. You can survuve this thing, your body has amazing recuperative ability. You just have to give it what it needs to win this fight baby!

Good luck everyone, I will spare the details in my case but I want to hear from anyone like me out there who made it through the worst of this and lived to tell about it.

Todd Conrow

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Jewel's picture
Replies 2
Last reply 12/14/2017 - 9:46am
Replies by: Bubbles, Toby0987

Good morning,

Hard to believe I've been off this site for awhile to help my husband now deal with his bladder cancer diagnoses. He will be having his 6th treatment of bcg tomorrow. The good news is my husband finished his Yervoy treatment in Feb 2015 and so far has kept him NED. Upcoming scans in Jan. I guess my question is have any of you felt with a 2nd cancer as well? This one has been very rough on us both mentally & physically. Hoping you all are doing well and thank you for this wonderful place to vent and be true to fears and questions.

Jewel

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jagstter's picture
Replies 3
Last reply 12/14/2017 - 9:17am
Replies by: TexMelanomex, jagstter

Happy Holidays & Merry Christmas, Everyone!

 

Back @ my favorite place (not!) for labs, scans & answers ... hopefully ;-)

 

Very eager to get lungs confirmed clear from August scan. I had a PET/CT in Pensacola, early November & it looked good. That would definitely be a good Christmas present for me!

 

Separately, I'll be trying to get somewhat of a second opinion regarding the right kidney tumor dx'd by the Urological Oncologist @ home. It has been increasing in size, all year. However, Doc wants to 1st do a TURP for my 180g prostate, allow recovery, then take a partial or full kidney in the spring. I don't think MDA would want to do a biopsy (from everything I've read) but I could find myself surprised. Only bummer w/ that is I'm flying solo, this time. My sweet wife needed to stay home w/ the 4 kiddos & a crazy "taxi" schedule. She explicitly told me I was not allowed to have any surgical fun on my own ;-)

 

Anybody here in Houston, this week? It would be great to meet fellow Warriors & encourage one another ...

 

Take care!

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Tracyyy's picture
Replies 7
Last reply 12/14/2017 - 7:37am

Dear all,

Nice to meet you all here even though it is difficult for me to post....

My mother was diagnozed in 2013 melanoma stage 3. Until now everything was fine, she did all her regular scans. Lately she found out she had a swollen lymph node in the groin which is near the operated mole. She is having the node removed tomorrow, but all the waiting and not knowing is devastating to me and for our family... I cannot stop searching the Internet, i know this is not a good thing as every problem is individual but i am so worried. However, I found out that there are many people with 1 lymph node positive which have been NED after that. I would appreciate sharing some expercience because she means everything to me!!!

Sorry for my bad English, I am from Bulgaria. Wish you all good health!

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MelanomaMike's picture
Replies 7
Last reply 12/14/2017 - 12:39am

Hello Family, just checkin' with ya's, i start my 2nd round of Pembro tomorrow morning, cant wait! the farther along i {we} get with the treatment, the better it works! allthough, i want to say it has already shrunk my tumors {wishfull thinking!} of course we wont know untill my next scan. I expressed during  my 1st dose, when i was in the recliner hooked up to my bag of Pembro, i felt a warm burn in my lungs  {thats where my tumors are,}  i imagined that was Keytruda battling its enemy for the 1st time during my war against Melanoma! lol..a lil' update on my side effects, low energy, more so on week 2, apitite is weird, some days no, some days cant get my fill! joint pain in shoulders, arms, yet kinda had this "before" Pembro realy...and of course the biggest "side effect" to date, my tattoos are Bubbling Up! some more then others but, hay! tattoos arnt suppose to be there right? Pembro is doing its job! i can feel the texture of my skin like its "Braille" for the blind! really weird! lol...overall i feel ok, lets bring on round 2 & get that in the history books, im dying to take my next Scan!..take care ya all, sorry i havnt posted in a while, time is flying it seems....love ya guys...Mike

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