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.

Expand/ Collapse Topic
 
Replies By
View Topic
cerabell18's picture
Replies 1
Last reply 8/20/2014 - 12:54am
Replies by: casagrayson

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?

Login or register to post replies.

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

 

Login or register to post replies.

curious12's picture
Replies 4
Last reply 8/20/2014 - 5:30am
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!!

Login or register to post replies.

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"

Login or register to post replies.

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?

Login or register to post replies.

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...

  

Login or register to post replies.

tcell's picture
Replies 6
Last reply 8/19/2014 - 11:18am

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

Login or register to post replies.

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.

Login or register to post replies.

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? 

 

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 8/19/2014 - 11:00pm
Replies by: Anonymous, casagrayson, dodgedh2, Janner

As taboo as subject as this is, I need and want to know what it will like and what I can expect to see as my loved one gets closer to death from melanoma.  Does anyone have insight that they can share about this?

Melinda

Login or register to post replies.

jualonso's picture
Replies 2
Last reply 8/19/2014 - 1:24pm
Replies by: jualonso, gaby

Hi, i just want to inform for people who has problems for dealing with english language that there is a new web with a forum for people who speak spanish language.

 

just for trying to help as many people as possible

 

Http://venciendoalmelanoma.com

Login or register to post replies.

Nicole35's picture
Replies 3
Last reply 8/18/2014 - 12:35am
Replies by: Nicole35, Janner

I am new here so Id like to say hello! I was diagnosed with Melanoma In Situ on 8/6/14, had my WLE on 8/13.. Now I am waiting for those results. In the mean time I have been reading my original path report and noticed some things of concern. First off, my mole, which was flat, small mis shaped, was taken with a shave biopsy and that came back in situ, can In situ truly be diangnoses with just a shave? Or is it more of AT LEAST In Situ? Also path report says things like with in Epidermis there are nested and single melanocytes growing in a lentiginous and confluent growth pattern, the lesion closely approaches a lateral margin and there is pagetoid scatter of melanocytes to higher levels of the dermis.  I hate this waiting game, and am concerned that with a shave biopsy in situ is just the only depth it could be staged at.  im aware of how dangerous Melanoma can be, my aunt had a WLE with no further treatment and 10 years later out of no where had stage 4 melanoma in her lungs. I want to see a melanoma specialist to be on the safe side, but any and all info anyone here could give is very much appreciated. Melanoma is a beast and we are all fighters. Thank you so much! And God bless!

ps. I also have several dysplastic nevi

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2014 - 4:08pm
Replies by: lou2, Anonymous

FDA approved this year.  Supposed to detect melanoma without biopsy.  Anyone had this used on them?  Only can be done by derms, not patients by themselves.

Login or register to post replies.

Ginger8888's picture
Replies 11
Last reply 8/19/2014 - 9:11am

I did the 30 day Hd interferon back in april with just a little fatigue as side effects and failed it..I just finished my last of 4 infusions of Yervoy Wed and have no side effects with it either..I've been reading about the Yervoy and most people are having crazy side effects and it's working for them..I am very worried that i'm not going to respond to it because of the lack of side effects..Has anyone responded to Yervoy with no side effects?..I won't have scans for 4 weeks...I'm stage 3 C

Login or register to post replies.

angtom's picture
Replies 6
Last reply 8/19/2014 - 1:49am
Replies by: angtom, Patina, ecc26, WITom

I have a question my husband had his first ipi treatment 2 weeks ago he is stage 4 melanoma braf neg mets in lung and trunk. He had his tumor harvested yesterday for the TIL trial  at moffitt. We were surprised at how much the tumors had shrunk as was the doctors, the original spot to harvest the tumor which was the largest was almost to small now to get a good sample they wanted 2 cm but said 1 cm would do so they also took another sample from his abdominal wall which had shrunk also has anyone else had this kind of reaction to ipi after first dose?

Login or register to post replies.

Pages