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.

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RJoeyB's picture
Replies 7
Last reply 8/21/2014 - 9:01pm
I thought I'd report a phenomenon I've experienced over the past year or so which others may find interesting or have even seen yourselves.  If you read my profile or have seen my other posts, you’ll see that I've had three different immunotherapies in the past four years:  high-dose IL-2 and TIL cell therapy (at NIH in 2010-11) and Yervoy (at my home cancer hospital in Spring 2013).  Even prior to Yervoy, I started to notice very mild vitiligo in my hands, feet, and neck — mild enough that you might not notice it if I didn't point it out, but knowing my skin as well as I do now, I can see it.  My doctors have always been pleased to see it and the incidence of vitiligo and immunotherapies are pretty well documented elsewhere on this forum, but this isn't about vitiligo per se. 
 
Much more dramatic for me has been the complete disappearance of many moles all over my body.  I was never officially diagnosed with any sort of dysplastic nevi syndrome or disorder but have always had a significant number of moles since I was a kid, too many to count and always something we knew we had to keep an eye on.  I never had a dermatologist say flat-out that I should have a photographic mapping, even after I was diagnosed with melanoma; I asked a couple of times if they recommended it, and they were always borderline as to whether I needed to or not.  In hindsight, I probably should have just done it, but ultimately, my primary disease didn't present as an existing mole, but a new reddish bump that looked more like a cyst and my dermatologist was pretty sure was a basal cell carcinoma until the pathology report came back as melanoma.  Just pointing out that the photographic mapping wouldn't have done anything to help me with an earlier diagnosis, but I still wish I had done it.  I had a lot of moles of varying shapes and sizes, especially on my back where they're harder to watch, but all over my body, really.  Worth noting here that since my diagnosis, all of my skin checks, typically every six months, are with the dermatologist at my cancer hospital, which is an NCI-designated Comprehensive Cancer Center.  At each of my skin checks, there has often been one mole that would look “a little odd” and which my dermatologist would biopsy.  They usually came back as mildly to moderately atypical, sometimes we’d need to do a wider excision and sometimes the margin on the biopsy was sufficient.  At Stage IV for four years, I don't get too worked up about these things any more.  Some of you can probably relate that the ABCDE criteria aren't all that helpful to some of us, they all look a little odd, with the most significant indicator being moles that are either changing (the “C”) or look different than any of our other already odd-looking moles.  My dermatologist basically said that pretty much any of my moles we biopsied would likely come back as atypical to some degree.
 
Over the past year especially, though, while the vitiligo has been relatively stable and hasn't changed or progressed muc), we've noticed that many of my moles have completely disappeared.  By many, I'd say about 90% of them (this is where a good mapping would have come in handy; instead, I've compared now to pictures of my face or arms, unfortunately no good pictured of my back) are gone and many others are faded.  Where they've disappeared or faded, they haven't been replaced by vitiligo spots of no pigment, they've just returned to my "normal" looking skin.  I don't know if this is also classified as vitiligo or has another name...  "nevi depigmentation"?  Regardless, like the vitiligo, it's something my medical oncologist was particularly pleased to see when I showed him a picture a few months ago that was a close-up of my arm from a few years ago, just before I had TIL, compared to today.  
 
We know that this and the vitiligo are no guarantees of continued response of any kind, but are certainly not bad things in the context of immunotherapy; the reason they can occur in the first place with immunotherapy is pretty clear.  We don't know if we can attribute this to the TIL cell therapy or Yervoy, perhaps it's both.  We started to see the vitiligo before I had Yervoy, but didn't notice the disappearing moles until the past year or so, but it may have started earlier.  While both my medical oncologist and dermatologist have seen vitiligo before, they haven't seen this "disappearing mole" trick, at least to the degree that it's so obvious with me.  Frankly, it makes my skin checks, both self-exams and with the dermatologist, quite a bit easier, as I have many fewer existing moles that I don't have to track and wonder if they have changed.  I still have to be on the lookout for new ones, certainly, but that's become a simpler task now.  I also imagine there may be an increased risk of one of these disappeared moles becoming an amelanotic melanoma, but again, I'm still vigilant for new irregularities — as I said earlier, despite a large number of moles, my original primary didn't present as an existing mole that started to change.
 
I thought it was worth sharing, and am curious if anyone else has seen this with their own moles?
 
Joe
 

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Had a large tumour removed from my back (13mm, mitosis 12, ulcerated), and WLE/SLND in January '13. Have felt great since. Surprisingly, my last scan (August 1st) showed 3 growths in my lungs (2 on left, one on right). All 3 are about 1cm x 1cm. I'm at Sunnybrook, in Toronto, and have signed up for a clinical trial. I'm BRAF positive. The trial has three arms Vemurafenib, and two others. Haven't been told what the other two are yet, but at least I will definitely be getting something. Has anyone else done this at Sunnybrook? I know it's pretty vague info right now, but will update, when I find out for sure...

 

 

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The PD1 is doing fantastic but there are a few problematic tumors thus they want to do radiation.

A tumor in my skull is right at my brain. Tomorrow's MRI will show details. But today my radiation doc was thinking of doing external beams to that section of the skull where the tumor is of 39 gray in 13 fractions. After the MRI he will know if he can instead angle the beams to just that tumor or if we are dealing with further problems. The pet scan did seem to indicate several tiny tumors in various spots of my skull as well as this 2cm one.

There are also the t12 and l2 in my spine. He's thinking of doing those like last time for the t10 of 30 gray each in 5 fractions. Although they are a problem I'm not having anywhere near the symptoms like I did when the t10 almost paralyzed me last winter. Although the pet/ct scan seems to indicate from the light on the skelatal view the t12 is about 2 thirds the size the t10 used to be. It's a short horizontal bar instead of a dot.

So my first concern is over 90 gray seems like a whole lot of radiation but I dunno maybe that is common. It's certainly more than 3 times what I've had in the past.

My second concern is the plan to radiate the tumor in my skull. I was thinking something more like gamma knife but maybe that is only for inside the brain not the skull at the brain I dunno. I was also thinking intensity-modulated radiotherapy (IMRT) but again maybe that is only for inside the brain. I know mayo where I get my pd1 is still working on their proton therapy which again may not be for this. I know when my doc kept me from being paralyzed he did stereostatic radiation (SRS) with a CT scanner to more directly pinpoint the beams.

So I dunno. I'm kind of over my head again. Any advice would be appreciated.

Artie

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MacMac's picture
Replies 13
Last reply 8/29/2014 - 1:53pm

I went to my dermatologist a few weeks ago mostly because my grandma was concerned about what I thought was pimple gone wrong  on the top of my left shoulder (her sister passed of Melanoma).  Being the good grandaughter I am I had it checked out :)  Imagine my surprise when I received the call at work that it was Desmoplastic Melignant Melanoma.  After that all I heard wast "blah blah blah."  I got a copy of my pathology report.  The thickness is 0.92 mm, Clark's level III, Mitotic index of 1, pathologic stage T1b.  From that point forward I feel as if I have been shuffled from Dr to Dr and being told make this appointment go to that office fill out this paperwork.  Yesterday I actually drove to the wrong office.  I feel like I am only really hearing a 1/4 of what I am being told (thank goodness for my family that accompanies me to these appointments). 

I saw the oncologist last week.  He said that there are cancer cells along all the margins of the shave? biopsy that was done.  He said that since there were cancer cells along the margins and I measured at a 0.92 mm it is highly likely there is still cancer left.  He also said my thickness could have been greater since they didn't get all of it when they scraped of the mole.  He feels it could have been close to or a 1mm fairly easily.  He recommended a wide excision on my shoulder.  From the point of the mole it would be 2cm out and all the way around.  He will also be doing a sentinel lymph node biopsy.

Yesterday I saw the plastic surgeon.  Since the cancer is on top of my shoulder I don't have a lot of skin to maneuver to close the gapping hole I am going to have. So he gave me two options:

(1) They will re-arrange the skin the close the wound but this will cause an S shape scar that will run basically from my collar bone near my neck all the way to the outside of my shoulder on the back.  He said that this will require a night stay in the hospital and will be one procedure.  However, he indicated that because of the location the skin will be very tight and under pressure so it will stretch and pull on the scar causing it to widen.  Sounds like it will be a pretty narly looking thing and pretty large.  On the positive note I have freckles so it may act as camoflauge???

(2) The second option will consist of three seperate surgeries each with a 2-4 day hospital stay.  The first surgery will consist of having a temporary skin graft placed in the wound.  After x amount of time (again I am not hearing every detail) I will go back into surgery and have expanders placed under my skin - one near the base of my neck and one on the outside of the shoulder.  The third surgery they will remove the expanders and they will close the wound.  This will give a scar that runs in the direction of a bra strap and will be much narrower since the skin will not be under so much pressure.

I am very concerned with utlimate range of motion of that arm.  I had shoulder surgery on my other arm last year and will never be 100% so I heavily relay on my left arm.  I am worried if I go the S route that my skin will be so tight that it may hinder my movement.

I don't consider myself a vein person so option 2 seems like a lot to go through just for a pretty scar but I am also not sure if i want to look down and see this horrendous thing on my shoulder that may just be a constant reminder of what I am feeling right now.  Also I worry if I ever need a revision to the S scar that my insurance will then consier it cosmetic. 

I still have to go back to the oncologyst and the plastic surgeon for a pre-op appointment and I also have to see my eye Dr and womanly Dr to check for melanoma elsewhwere.  I just feel so lost.  My uncle passed away from lung cancer last year so I just keep telling myself "at least it isn't lung cancer"  but then I say "but this is still scary" I am not sure what to do or what to think and I guess I just need some advise from people who may be feeling the same.  I just feel like I am not allowed to make a big deal of any of this because the perception out there is "skin cancer is the best cancer so you are lucky"  (or maybe that is just my fear - that people think that)

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/20/2014 - 5:22pm

The letter from my dermatologist arrived after a week of alternating between minimization and cold fear. The introductory sentence was brief: "I am writing to inform you of your results:" 1. Malignant melanoma on upper left arm. A business card was enclosed with the name of a general surgeon with the advice to call the office and schedule removal. That's it.

I immediately started searching for information; what is it, who has it, how does it develop, how to cope. Now I wonder what I can do next, besides removal. Can I go to the Dr's office, who was new to me and I've only seen once, and ask for the lab report? Would I get it? Should I have expected more? It doesn't seem like I could have gotten less.

I'm absolutely new here, and hope I'll find some answers. Thanks for reading and responding.

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/20/2014 - 10:00am
Replies by: Janner, Anonymous

http://jco.ascopubs.org/content/early/2012/03/06/JCO.2011.38.8561.full.pdf

 

Table 1.  How can the 20 year survival of any group of people age 80-89 possibly be 95.8%?  That makes no sense from an age standpoint.

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cerabell18's picture
Replies 4
Last reply 8/21/2014 - 6:07pm

Sorry if this is a bit lengthy.

I had a mole on my arm for as long as I can remember but over the last few months people have been commenting on it. It has always been raised and multicolored. I went to a GP and he made it sound like there was nothing to be concerned about but that I should go to a dermatologist because it was suspicious. I went to the dermatologist and the doctor definitely didn't help me feel less nervous.

I told her all the needed info (burns, family history, how long have I had the mole, are there others) and she took a look. The first thing out of her mouth is "This is bad" and then she left the room to grab another doctor, not saying anything to me. I think she realized how upset she made me when she came back in with the other doctor and found me crying. I'm not an overly emotional person so it takes a lot to get me to cry. When I went to their office today I figured I would just be getting the mole removed to be safe, not be told that they believe it's melanoma and I need to get a biopsy. I was not mentally prepared for that conversation.

I got a incisional biopsy and heard from them one week later. The main tests were inconclusive. The mole was deep but since it is something I've had from a very early age that is not uncommon. It was strange because they were seeing atypical cells with normal cells but nothing that screamed melanoma, it was just something they were leaning to. The doctor said that she was sending out for 'special testing'  to get a firm diagnosis as they can look for specific things in the tests to say one way or another.

I just got a call from the doctor saying that it is "kinda bad news." The special testing results came back negative but since the cells were so atypical they are diagnosing it as melanoma and want me do a sentinel node biopsy and a wide excision. They said even if the mole wasn't melanoma that the atypical cells can still travel to my lymph nodes and they were a concern enough that I don't want it in my body. She said it's possible that this mole would have never caused problems for me or it could be very serious.

I really am at a loss on how to feel. On one side, I guess the special tests look for specific markers all came back negative, which I think is a good thing? It sounds good but she kept saying "We are still diagnosing it as melanoma because they are so atypical." I'm picking up my pathology report this afternoon to see if I can understand any of it. I'll have to do the dreaded Google to see what I should look for. I'm trying to be hopeful and think positively but I'm just so overwhelmed. I had hoped this call would give me some closure, either I have cancer or I don't, but the doctors are still unsure but are playing it safe. I want to just accept that I do but with the uncertainty on their end it leaves me with hope that this is just a nightmare I'm going to wake up from.

Has this happened to anyone else?

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taters90's picture
Replies 0

Hi all,

I was directed here from another group :)

Yesterday my dad had a biopsy done (Tuesday I'm in Australia). 

He has what his doctor believes is a melanoma from what I can gather closer to 1cm in length to 5mm in with minimum. unfortunately it's somehow been unnoticed until my mum recently picked it up, it is ulcerated badly and causing a crater in his ear. The doctor has advised at the minimum he will lose his ear but the appropriate course of action I assume won't be determined until he receives results?

I'm just wondering if anyone has been in a similar situation with how this sounds and what your outcome was and treatment? I'm new to this, I have no idea on how quickly this could all develop or not. 

Thanks,

Tatum

 

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curious12's picture
Replies 5
Last reply 8/21/2014 - 6:18am
Replies by: Anonymous, curious12, Janner

My son (age 9) had a spot removed from his heel. It was removed via punch and apparently was mildly atypical, but with margin(s) involved. The derm thinks completely unnecessary to re-excise. I am bummed there are margins (although thankful it is nothing)  Would it be overkill to take him elsewhere to re-excise? I have read that acral nevi on kids appear atypical under the scope anyways. It was 1mm,dark and on his sole? It's also painful to have a shot there, but will do it if need be! I'm not comfortable asking the derm to do it-- he really didn't even want to remove it in the first place. Another derm thought it was slightly atypical but she couldn't do a punch so I went to him. guess that backfired!!

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Amanda's picture
Replies 2
Last reply 8/19/2014 - 10:31am
Replies by: Owl, ltalley

Sorry i havn't posted in a long while.  Randy is still on the Mk-3475 trial at 10mg and it still doing well.  He had an issue with an adrenal insufficiency from the treatment which he now has to take replacement hydrocortisone every day, as well as had a pnuemonia and was hospitalized for both these conditions until they were discovered and controlled.  

For those of you who don't know about my boyfriend randys case, he was diagnosed march 9th 2012 stage 4 right off the bat.  No primary.  Brain, liver, lungs.  He had a craniotomy followed by WBR, and Yervoy.  The radition did great on the brain mets, and the yervoy kept the tumors stable for about three months, when they started growing again.  He had a small bowel obstruction which eventually required surgery.  During the time before surgery he lost a lot of weight, was really weak, had lost about 30lbs. After this surgery, and discharge we got a new oncologist who was more informed about melanoma.  He pressed to star chemotherapy.  I knew from research that chemo was rarely successful in melanoma, and had been reading about a new trial for Anti-pd1, now known as Pembrolizumab(former Lambrolizumab, or anti-pd1).  I insisted we try our best to get into this trial, and not do chemo.  Luckily his oncologist knew the trial oncologist and got us an appointment.  

Long story short, randy has been on the trial since february 1st 2013, and doing well.  Some tumors gone, and one, the original size of a large breast, now the size a little bigger than a golf ball, and stable.  One under the jaw line gone.  

Living day by day.  Just wanted to give an update.

-Amanda-

 

"Give thanks in all circumstances"

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ray39's picture
Replies 2
Last reply 8/18/2014 - 10:59pm
Replies by: ray39, Janner

I had a new mole removed today from my stomach area that my derm said was suspicious. It was slightly under 5mm. He told me before he did it that if there was pigmentation under the skin it's usually a bad sign.  Well, he did a deep shave biopsy and said it was all clear and that he always likes to be overly cautious. Has anyone else heard of this pigmentation description?

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miky85's picture
Replies 1
Last reply 8/18/2014 - 5:11pm
Replies by: tcell

Hi, I just started to read this forum recently. 

My father has started his terrible journey in Sept 2011 when they found out a melanoma in his thigh. That was already stage 3, not sure about the specification. After different treatments and surgery to remove linphs he has got satellite melanoma all over the leg. Obviously, the leg became bigger and bigger during the period. 

From January 2013 to November 2013 he has been part of the sperimentation of a new drug, the project was callend PRAME. We did not see any relevant benefit and that's the reason he left for starting Yervoy, in January 2014.

In the process of going from local melanoma to satellites they moved him from stage 3 to 4, and that was right during the PRAME therapy. In our country Yervoy is given just to stage 4 patients.

He has been able to have the first three sessions and then, in April 2014, just went down. He collapsed being in and out from hospital with infections, inflammations, pain. Doctors told us was a reaction and probably an intoxication from Yervoy. Recently, just a month ago he was again in hospital with very high fever, nausea, diaorrhea, confusion.

Doctors told us that he is in a terminally ill stage where they are not able to do any prediction. His blood has a very high LDH value and the forecast is to have blood cancer and perhaps mets on linphs and brain. He is literally under palliatives and he is not eating, so skinny and pallid. Most of the day just sleeps and his voice his so low and innocent, like his behaviour, since he is not clearly aware of the situation. He cannot have TC or radio because he is too weak, at least they say.

I am feeling so bad, do not know what to do and what to think. I am very confused because everything went so fast and now I am stuck with this situation. What do you think? Do you have any experience at all with this particular aspect of illness?

Thank you all...

  

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tcell's picture
Replies 7
Last reply 8/20/2014 - 2:39pm

Dear Friends,
Last Wednesday I had my first dose of IPI. At the same day I also received a dose of Zometa for the tumors in my bones.

The good news is that I did not encounter any of the severe side effects. Nothing much besides A little diarrhea.

Due to my high tomor burden I am not in very good shape at the moment but still trying to go for a short walk every day.

Ginger, thanks for the advice with V-8 juice. Thanks to all the others for their advice!

lab results from last week were not looking too good with an LDH close to 2000. had some blood drawn today hoping that the situation is already improving. I know, however, that waiting for IPI to kick in can take quite some patience.

so please keep your fingers crossed for me!

all the best,
Chris

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Had my most recent PET scan on July 17th.  The results were phenomenal.  I had 11 mets "resolved" from the B-raf/MEK.  Granted, that was out of 15 mets and 4 of the ones not resolved were in my brain.  I had whole brain radiation back in March/April so I was sure that I was going to have positive results.  As you can tell from the subject here, the bad news is coming.  We did a Brain MRI last week and as of right now, I have 9 mets in my brain.  Three of the four that were in there grew and the new 5 are all 6 to 8 mm.  The other ones were 2 mm and three are now 6 mm, one stayed the same.

As you can see, this was not the result I expected.  The Oncologist and I both were convinced that the Ipi I did last year was helping the B-raf/MEK.  Who knows, maybe it still is.

Any idea what to expect now?  I only had a heads up phone call from the P.A. and haven't seen the doc yet.

 

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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Brigitte's picture
Replies 6
Last reply 8/18/2014 - 8:30pm

Hi. Last week I had a conservative excision to remove the rest of a atypical  mole.  I got the patholgy report back and I was wondering if the margins are all clear? 

 

Diagnosis: Surgical Changes

Gross Discriptin: Received in formation, labeled "right mid upper back", is a 2.8 x1.2 cm elliptical excision specimen of gray-tan skin and subcutaneous tissue. The specimen is inked, serially sectioned and submitted entirely in four cassettes.

microscope decription: sections show surgical changes without residual nevomelanocytic proliferation. 

 

I go back in a week to get the stiches. out. Whats next? 

 

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