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
Replies 1
Last reply 8/21/2014 - 8:08am
Replies by: Anonymous

http://www.webmd.com/melanoma-skin-cancer/news/20140820/high-risk-melanomas-often-on-head-or-neck-study-finds

 

 

"We may now get more aggressive in the treatment of melanoma that is not deep but has a high mitotic rate. Instead of just cutting it out, we may add in chemotherapy," she said. "So we may change how we evaluate melanomas and how we treat them."

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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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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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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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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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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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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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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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jogo's picture
Replies 4
Last reply 8/19/2014 - 2:58pm
Replies by: Kim K, BrianP, jogo, katie1

After 2 3mg/K ipi infusions, a toxic immune related Adverse Event, 2 infusions of Remicade, massive doses of Prednisone, orthostatic hypotension due to adrenal gland insufficiency, massive headaches for several months, convergence (vision) problems (the oculomotor nerve crosses behind the pituitary gland), I'm told I don't have hypophysitis.  My adrenal gland responds to ACTH when it's administered.  When the endocrinologist takes me off the 5 mg Prednisone and 0.1mg fludrocortisone, I'm exhausted by early afternoon after taking things easy.  I'm back on the Prednisone and fludrocortisone. The ophthalmologist has given me eye exercises to see if I can improve my vision without the use of prism lenses.  My internist doubled my synthroid. And I'm still told I don't have hypophysitis.  My husband says it's all in my head.  He's trying to be funny.

.

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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

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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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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?

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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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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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