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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Beth Reilly-Stark's picture
Replies 1
Last reply 9/8/2017 - 8:28am
Replies by: momsmole

Hi everyone, 

I had a move removed from my right thigh back in June of this year. My wife thought it felt a bit unusual, so I went to get it checked, it was removed 4 days later. 

Got sent an appointment through for two days ago after not hearing anything in regards to results, the dermatologist confirmed it was melanoma in situ. Had an appointment with a plastic surgeon yesterday who is scheduling me for a wide local excision and skin graft, and said if all goes well I won't require further treatment. 

My emotions have been all over the place, I realise I'm very lucky it was caught when it was but I think I'm in shock, it's all happened so quickly. I have an appointment with a cancer nurse in a few weeks time as well and have been told what signs to look for in future. 

Has anyone else had a similar situation to mine? I have a lot of moles and I'm worried in case I miss something. 

Thanks for reading,

Beth

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vpettis331's picture
Replies 2
Last reply 9/7/2017 - 11:30am
Replies by: vpettis331, Janner

Hello! Yesterday I went to the dermatologist for my first ever overall check. I just turned 30 and have spent a fair amount of time in the sun, so it was time.  After completing the examination, my Dr looked at two areas (one on my back and one on my left leg) with his dermoscope and advised me that he was going to need to do a shave biopsy on both. While marking the mole on my leg, he made the remark to his medical assistant that this mole was a "level 2" and she made note. The only thing he said was that they looked abnormal and that's why he was removing them, but they were probably nothing. After getting home and researching what "level 2" could have meant (just out of curiousity), I am beginning to become concerned that he suspects Superficial Spreading Melanoma due to the moles age and characteristics.  I have had this particular mole for as long as I can remember and it used to be perfectly round, but has grown jagged/asymetrical borders and changed colors over the last couple of years. I learned about ABCDE and the mole on my leg has/had several attributes of a SSM. Anyone else have a similar experience or know what "level 2" could have meant?  I am not one to make a "mountain out of a mole hill" and I am genuinely curious as to what "level 2" refers to.  I am a little embarrassed to say that I clammed up and didn't ask because I was intimidated because the Dr was outrageously good looking HAHA. Usually, I would have asked right then.

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ALWAYS READY NEVER PREPARED's picture
Replies 6
Last reply 9/12/2017 - 3:00pm

Hello,

Anyone that is suddenly suffering from confusion, might have their calcium level checked. My husband had become delirious, due to high calcium levels created by dehydration, which was a fallout from fatigue/sleeping. My husband is on Opdivo/Yervoy, and became so tired, he slept all the time and was not getting enough fluids. The calcium level in his blood became really high, causing the delirium.

 

Just wanted to put that out there.

Sandy

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Chelle White's picture
Replies 2
Last reply 9/6/2017 - 11:12pm

No staging yet. Saw dermatologist end of June - sent to Plastic Surgeon 5 weeks later - thought I was getting them removed then -nope just a pre-appointment. Cried so he biopsied one - 2 weeks later went for follow up and path report came back as .55, level 3, mitotic rate 1 - scheduled flap surgery for 9/5. While waiting for surgery called reg physician for my questions - never heard back. Called derm - she explained we wish to see insitsu but mine was level 3 in testicular. Asked her what I need to do - she said I'll need to make appt with oncologist once the surgery takes pla e and pathology report comes back.
Went and called an oncology center telling them my surgery wasn't until 9/5 So they scheduled an appt for 9/21.
There's been no blood work and I didn't have any biopsy or that dye thing with a lymph node.
I feel lost - what am I missing? What should I be doing? What should I be asking? I feel like this has been going on too long without answers.
I go on Friday for bandage changes. Haven't had to use my rx'd painkillers. Slightly uncomfortable but not horrendous.
Thank you.

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BrianP's picture
Replies 13
Last reply 9/24/2017 - 12:45pm

I'm at MDAnderson right now.  Flew in yesterday morning for scans and met with Dr. Tawbi this morning.  As far as MDAnderson and getting to and from the airport I had no problems.  To be honest I couldn't tell anything had happened here from my transit from the airport.  I guess there's still a lot of problems on the west side of the city.  Everything seems pretty smooth at MDAnderson except for the Infusion Therapy department.  I waited 2.5 hours to get a port accessed and a lady next to me waited 4 hours.  Not sure if that was Harvey related or not.  The port access service is always bad but not that bad.

Scans went well.  Still stable with one tumor slightly smaller.  I'm 9 months out from my CAR-T therapy and 6 months from my last Ipi infusion and seem to still be responding.  Dr. Tawbi is extremely pleased.  Says he will be even more optimistic at the one year mark if things are good and extremely optimistic at the 2 year mark which really made me feel smart because that's exactly what I told my wife before he walked into the room.

I wanted to share this trial with the board.

https://clinicaltrials.gov/ct2/show/NCT03131908?term=%22melanoma%22+%22M...

Dr. Tawbi and his colleagues seem to be very optimistic about this trial at MDAnderson.  If someone has progressed on PD-1 this would be one I would consider.

Brian

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/15/2017 - 8:17am
Replies by: Shelby - MRF, Janner, Anonymous, cancersnewnormal

Hello,

I'm new here and have not been diagnosed with melanoma. I do have a family history of it though and one family member who died from it. 

In the past few months I have noticed a few old moles starting to look strange, and also new ones popping up all over. I also had a wart on my hand that was removed with cryotherapy that is now becoming irritated.

I am very concerned that the dermatologists I've seen will not have me sent to get a biopsy. I had one mole that was bleeding awhile back that now looks like it's changed shape and color. I have another that used to be flat that has become raised, and appeared to be "breaking down", some pieces of it came off. In the middle it looks like the pigment is gone and it's just normal skin. Now it's taken on a shiny appearance. I have tons of moles, most of them normal looking but also several that look odd. I had a burning red spot on my arm last week that turned into a little brown mole. I've got a large raised one on my face that has gotten bigger and looks a bit red around the edges. 

I am an English teacher in Japan (but am American). I am starting to feel that they are a bit behind the times here. Other family members have had several biopsies back in the states, for marks that looked pretty small and not to concerning. My grandma has had several lesions removed for basal and squamous cell carcinoma that just looked like little dots on her skin. However I've had 3 dermatologists here tell me that my moles are nothing to worry about because they are small and don't look weird enough. I also mentioned my family history. Apparently the primary thing they look for here though is the size of the lesion. If it's not bigger than 7mm or a very strange color then they don't want to biopsy it. 

Maybe this is nothing, and maybe I'm crazy but I've honestly been feeling worried ever since that mole started to bleed. The doctors have looked at many of these with a dermascope but have instructed me to come back only for ones that are bigger than 7mm. What do I do? Keep going to more and more derms until someone will send me for a biopsy, or give up?

 

If this does turn out to be melanoma what do I do? I live abroad far from any family and have only Japanese health insurance. I don't have insurance back home, I don't have savings, and neither does anyone in my family. 

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Lbell's picture
Replies 3
Last reply 9/6/2017 - 3:07pm
Replies by: MovingOn, SABKLYN, Janner

I'm waiting on pathology tests (14days is a long time) but the dermatologists has already stated that he thinks  it will come back "high class melanoma", anyone familiar with this non medical term for classifications?

I went to the dermatologist for a completey unrelated matter and the Dr in mid sentence grabbed my arm and said we need to biopsy this. At first I laughed off his eagle vision but I think now I'm just relived that his clincial skills picked up on something not related to the reason for the clinical visit.

 

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2ndTimeRound's picture
Replies 4
Last reply 9/6/2017 - 11:28am

Hi All,
I received news today that one of the moles taken out last week is in fact a melanoma. This after just a little more than 5 years since the last one (which was my first). Because I go for regular check ups, we caught it early and doc says it's superficial. What I want to know is whether anyone with a superficial melanoma has experienced fatigue, dizziness and intermittent nausea. I really haven't actually been feeling physically well the last few weeks but don't know if it's just fear and paranoia. I'd live to hear from you if you've had similar symptoms at the same stage Thabk you!

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pattikella's picture
Replies 1
Last reply 9/5/2017 - 7:34pm
Replies by: Bubbles

I just found out that I have mucosal melanoma in my cervix.  My Dr. ordered chest x-rays and abdominal ct scan.  I have been reading, and it looks like this can spread to all parts of the body, including eyes, brain, arms, and legs.  Should I be checked all over?  Maybe I am over reacting, I don't know.  Also, what does the acronym NED mean?  I've seen it a few times on this site.

Thanks

 

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Bubbles's picture
Replies 29
Last reply 9/19/2017 - 10:01am

Perhaps this will spread a bit of hope:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/09/14-years-in-melanoma-world.html  

After now annual scans (CT's of neck, chest, abd and pelvis, with an MRI of the brain) the gist is this:

168 months (14 YEARS!!!!) post my original melanoma diagnosis in 2003 at the age of 39
88 months Stage IV (more than 7 years!!!)
82 months NED
80 months after starting nivo (Opdivo)
50 months (more than 4 years) AFTER my last nivo infusion in June 2013

For all our stuggles and losses...there are wins as well.  I wish you all my best.  Celeste

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Anonymous's picture
Replies 5
Last reply 9/9/2017 - 10:38pm
Replies by: SOLE, Anonymous, Raluca, Bobman

First off, I'd like to ask if it's okay for me to ask a few questions here. I've not been diagnosed with melanoma yet, but all the dermatologists seem to think it's just a matter of time. My first dermatologist visit was for acne when I was about 13, and that was also the first time I had pictures taken of some of my moles and received the sun safety lecture. I'm very fair and have had dozens of 2nd degree sunburns; we actually thought I had a sun allergy for awhile frown

My last dermatologist visit was during the summer where my mom had two Basal cells cut off and I had another skin check. She was instructed to go to a derm once every year, but I was still told to come in every 6 months, which seems kind of ridiculous considering I've never even had any skin cancer and I'm only 21.

My main question is about whether anyone else has a high number of atypical moles and if your melanoma resembled them. I know people always say to look for the ugly duckling, but for me, most of my moles are ugly in various different ways. I missed my last derm visit so I'm scheduled for one next summer, I was just curious about everyone's premelanoma stories. 

Also, a side question to those of you with multiple moles: how do you monitor all of them? I know change is a big one, but I can't monitor all my moles and I cant even see the ones on my back. I also imagine that with pictures all my moles would get mixed up, since I probably have over 40 just on my legs.

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Anyone have any good info on these things?

Shannon B

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RitysMom's picture
Replies 10
Last reply 9/8/2017 - 8:32am

It's been over a month since I've posted...caring for Kristine has become all-encompassing for me. Kristine tolerated four ipi/nivo treatments, although not without complications. In fact, it seems as if it's been one complication after another and we're just trying to put out fires in order to keep her alive long enough to show a response.

She has deteriorated in many areas: her upper body has significant weakness now, in addition to her lower body...that has caused us to go to only using a hoyer lift to move her; she has also deteriorated neurologically...she's severely lethargic and is really confused.

She had an MRI/CT done on Tue 8/29 to see if there's been any response to the treatments. That evening, Dr. Freeman called saying that the radiologist found a dvt in her leg and a pulmonary embolism. We called 911 and went to our local hospital with the idea that she'd transfer to a hospital where Dr. Freeman could see her in the following days.

A filter was placed to catch the blood clots...thought we were done. Nope.

*She became almost comatose...unable to wake up, but does respond to pain. They have tried everything to get her to wake up: drain in her brain, taking her off fentanyl patch. She's breathing on her own, heart rate is ok.

*Her neutrophils are zero...they put her on Neupogen last Wed...not seeing any response.

The drs here believe her current state is due to the tumor burden in her brain and nothing can be done.

On top of all that, Dr. Freeman says her MRI shows a 20% reduction in tumor size...she's actually responding to treatment!

Dr. Freeman had been in daily contact with the drs here up until Saturday. I'm hoping she weighs in tomorrow on where we are. 

Not sure anyone can help, I'm just feeling we're at the end.

Cindy 

Mom of the beautiful Kristine

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Patina's picture
Replies 2
Last reply 9/6/2017 - 9:55am
Replies by: cancersnewnormal

Hi All,

Well up until infusion #32 all has gone great, but with #32 my Mom suddenly had a lot of issues with diarrhea and vomiting (intermittent). The doctors have ruled out colitis, micro-colitis and a host of parasites, bacteria and viral infections. They did find that she has a yeast infection in her esophagus. - She's not been able to consistently control the diarrhea and the vomiting has been here one day, gone for a few and rages back with lots of diarrhea...

Removing raw veggies, fruits and lactose hasn't worked and she's back in the hospital while they try to figure it out.  It's all very strange, has gone on for over 2 weeks and my Mom has lost 17lbs.  The idea of medication induced malabsorption syndrome is just 24 hours old (along the lines of what I've been saying - she just isn't keeping anything down), but enzymes haven't worked since she started them.

Anyone ever had any issues like this or hear of any?  My active 81 year old Mom is weak and is going to hate being the hospital while they figure this out, but it is the best place for her.

Thanks!

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MK7's picture
Replies 4
Last reply 9/5/2017 - 9:50am
Replies by: MK7, Janner

It was suggested I put ATTN Janner/regulars as you are all so full of knowledge :) Anyways, was looking to see if anyone could help with "interpret" my pathology report. Long story short, I'm 30 now and had a mole biopsied when I was 20 when I casually asked at a derm appt if it looked ok, to which my derm said it was probably ok but would take it out anyway. At my follow-up he said I was good to go, so I assumed it wasn't bad (hey, I was 20 and didn't know to ask questions).

Fast forward to today, after having my kids I went for a skin check because I was concerned about one mole. Between my last two yearly checks my current derm biopsied 3 - two were mildly atypical and one was moderately atypical (which I had completely excised in July). So this all got me thinking about the one I had biopsied when I was 20 and if it had been moderately atypical I want it out. I got a copy of my path report (that derm who biopsied it is no longer in practice and it is too long ago to obtain the slide for my current derm to look at). I gave it to my current derm to look at and he said he wouldn't be able to tell if it was mild or moderate without the slide, but can pretty much "guarantee" if it had been severe my other derm would have removed it all. In the meantime he said we will keep an eye on the scar area (there is some pigment regrowth, but my derm is ok with that as long as it doesnt look "off" or go past the border of the scar).

I will also ask my derm at my appointment next year, but since my last appointment I've been wondering about the first path report, SPECIFICALLY the last sentence and if it means something else is going on/seems to be an immune response going on??? Here is the whole thing:

 

Dx: Melanocytic nevus, compound type, with focal architectural disorder

"There are melanocytes, singly and in nests, at the dermoepidermal junction, bridging between some nests, and concentric and lamellar fibroplasia in the papillary dermis. The epidermal component of the lesion extends laterally beyond the dermal component. Within the dermis there are nests of uniform melanocytic nevus cells. There is a superficial, perivascular, lymphohistiocytic inflammatory infiltrate with melanophages."

Not that I totally understand what it says, but the sounds of the last sentence makes me kinda just want to have my derm take the rest out anyway...Thanks everyone!! :) 

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