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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stacijane's picture
Replies 3
Last reply 10/7/2017 - 8:09pm
Replies by: Fitzinop, stacijane, SABKLYN

Anyone have experience with this center? I'm seeing Dr Ernstoff on Monday for my first consultation. I believe he came to Buffalo from the Cleveland Clinic.

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Jimchief's picture
Replies 1
Last reply 10/9/2017 - 10:53pm
Replies by: Anonymous

Still early on in this process. Had WLE (primary tumor was 6mm+, so there's a big old scar down my thigh) and SLNB on Tuesday. Pathology on the SLNB came back today. 

Apparently, I drained to only one sentinel node, so they only took one. The good news is that there is clearly no MACROmetasteses. However, they seem to be unsure if there's MICROmetasteses

Pathology says:

Left inguinal sentinel lymph node:

-- Two SOX10+ cells of uncertain significance (see comment)

Comment: There are two cells in the subcapsular sinus of block A4 that
demonstrate nuclear SOX10 positive signal. They are concerning for
micrometastatic melanoma, identifiable by immunostain only. However no
corresponding cells are identified on the Melan-A immunostain or the
hematoxylin eosin sections and it is difficult to be sure of the meaning of these two cells.

Later it says: 

Size of largest metastatic focus: Two cells measure less than 0.01 mm in diameter.

Based on my (probably incompetent) poking around in the medical literature, it sounds like SOX10 is a better "identifier" of micrometastatic "action" than Melan-A or hematoxylin eosin, so that would make me think that maybe there is micrometasteses, BUT there's only two tiny cells that show that give off the SOX10 signal, so maybe not?

If I understand staging correctly, I'm either Stage IIC (T4bN0M0), or I'm Stage IIIB (T4bN1aM0).

They're planning PET scan and brain MRI next, but if those come back clean, am I right that my optimal treatment plan would be significantly different if I'm Stage 3B rather than 2C?

I'm curious if any of the good folks on here (and you guys are amazing BTW) have faced this "has it metastasized or not" question before. Overall, I'm obviously thrilled that there's no obvious micrometasteses, but I'm wondering if those who keep on the medicine and treatment plans would suggest treating it more like a 2c or more like a 3b if we don't learn anything more? (Or maybe it doesn't make that much difference and my assumption that the treatment plans would be way different is incorrect?)

If anyone has thoughts/suggestions, I'd love to hear them. Thanks again for all the good work so many of you do in giving guidance and advice!!

 

 

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Dave63's picture
Replies 10
Last reply 10/6/2017 - 10:57pm

I had a WLE to remove melanoma and plastic surgeon used dissolvable stitches under and on top of incision. This was 3 weeks ago.  The scar has started leaking a pink fluid and internal stitches are coming through. I pulled on what I thought was a scab and 2 inches of stitches came out. It seems like the surface healed up ok but it feels like there is a big hole under the skin. Is this normal?  I have never had this done but it seems like the stitches under the skin didn’t hold. I had BCC removed from my face on the same day and was stitched up the same way and it healed fine.

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It's been years since I've been on this site, and I am grateful it's still here. 

Four or five years ago, my derm performed a shave biopsy of what turned out to be a benign lesion.  I've had lots of shave biopsies, so I know what they should look like after completely healed.  This one, though, has been red and scaly/scabby the past year. I have mentioned it to my subsequent derms and both have said, "It's a shave biopsy site from a benign lesion and sometimes they can look like that after healing."  None of my many other healed shave biopsy sites look/feel like this, nor have they changed in appearance.  Is there anything to worry about?  

Thank you!  

"May the odds be ever in your favor."

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Weaver1228's picture
Replies 3
Last reply 10/6/2017 - 10:16pm
Replies by: Anonymous, Weaver1228, Janner

*I will preface this post by saying I am a 34 year old female with a previous past of basal and squamous cell carcinoma. I am currently 17 weeks pregnant.

I have had an evolving dark spot on my left posterior shoulder for several months (6-8mo). It became pretty dark (almost black) and very raised. I decided I needed to have it looked at. I had my biopsy done on September 15th and it came back as a malignant melanoma with a depth of 1.20mm and Clark's level IV, both peripheral and deep margins positive as well.

I have been prepped and prepared for surgery to remove the tumor and preform the lymph node test this coming Tuesday. I met with the OBGYN team this afternoon to go over the protocol for the surgery in regards to my pregnancy. I feel as though I have been fairly calm throughout this process until I just received a call from the Pathologist who is working with my case who said he wants to get a second opinion because he is not sure it is melanoma now and that it could take WEEKS to get my results back so the surgery has been put on hold. My lab work has already been reviewed by two other dermopathologists and several oncologists who are all in agreement while the original diagnosis. Because the risk factor increases the further along I am into my pregnancy, I'm not sure where to go from here.

Has anyone had a malignant melanoma and then be told the diagnosis was wrong? Especially with a depth and Clark's level read such as mine? How prevalent are false positives with melanoma? I feel as though even if it does come back as negative I will likely have trust issues with my doctor for putting me through this stress. 

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Scooby123's picture
Replies 2
Last reply 10/6/2017 - 11:12am
Replies by: Scooby123, Bradley75

Hi guys, hope all well as can be.

had bloods today thyroid gone down even more from 0.4 to 1 so doctor called got to go on thyroxine medication.

 

on keydruda 4 round next Monday thyroid was going down before starting  keydruda but  do have family history of thyroid issues.

anyone on treatment for thyroid issues either from history of family or due to treatment how long does thyroxine start to work in your system . I believe he starting me on a low dose to start with.

i am going through menapause too so some of the symtoms I have been experienceing thought it was normal due to my age ect.

scooby❤️

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Dwilkinson's picture
Replies 2
Last reply 10/6/2017 - 11:38pm
Replies by: momof4boys

Has anyone seen Dr. Marr at UNMC before? I’m heading to her today for my first oncology appt. 

Wondering if anyone has opinions. Thanks!

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Jdp17's picture
Replies 6
Last reply 10/5/2017 - 11:04am
Replies by: Jdp17, Anonymous, casagrayson, GrossieGal313

I was just currently diagnosed with Nodular Melanoma, at least a Clarks level IV. Breathless at 2.3mm To say the least I am nervous wreck.I am 34 years old and a healthy individual! I had this what looked like an ingrown hair spot on my leg that I watched for a while. Never grew different in size or color. I waited about 4 months then went in and resulted to this. The "unknown" is seriously driving me crazy with anxiety and panic. I have my first appointment in a week for my PET Scan and to meet with the Surgical Oncologist and Medical Oncologist. Looking for some positive vibes, what to expect ect.

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Sertan's picture
Replies 10
Last reply 10/5/2017 - 5:08am
Replies by: Anonymous, sgreenberg, obtu.bt, Sertan, Ed Williams, Bubbles

Hello i am Dr. Sertan, i am an ophtalmolog and sorry for my english.
My father stage 4 with 6 brain metastases.
2009 first skin lesion
2013 lung met surgical removal
2015 second lung met cyber knife
Braf mek inh since 2015
Now 6 brain tumors since last week
Loss of power on left leg
Started wbrt and will start nivo+ipi

Any chance of long term survival
Any other treatment recomendations

And everybody can write me about any eye problems

Very good forum lots of nice people

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Cooper's picture
Replies 3
Last reply 10/5/2017 - 5:05am
Replies by: Anonymous, Bubbles

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GrossieGal313's picture
Replies 8
Last reply 10/17/2017 - 3:29am

Hello - My post is fairly premature. I don't have a lot of information yet.  I go in for a consultation with my surgeon on Thursday and am scheduled for surgery and sentinal lympnode biopsy on the 11th.

I'll start with what I do know....I received a call from the dermatologist that removed what I called a mole last Wednesday.  It's been there a very long time (8-10 years) it really hasn't changed (it's always been raised) and I've had it looked at twice in the past with a family practice physician beliving it to be a cyst.  Infact, the dermatologist that removed the top thought it was a scar.

Because of size and the and immediate plan for surgery with lymphnode biopsy that has been put into place I've gathered I'm at least a stage 2.

From what I understand the surgeon will go over the pathology report and after the sugery results I will go through staging and go from there?

Any advice as to what to expect over the next couple weeks and how to deal with the anxiety and stress until then?  Where do I go from staging?  If further treatment is needed I'm assuming I will be referred to an oncologist & at that point I find a specialty center?

The waiting is horrible, I think starting a conversation on this forum will help me deal until I get some answers.  

Donita 

 

Donita

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TexMelanomex's picture
Replies 17
Last reply 10/7/2017 - 9:41pm

Hey Warriors,

I was approved for the PV-10/Keytruda combo trial and I will start treatment next week. Any of you who have been on Keytruda that can offer any insights I would appreciate it (i.e., what you experienced, how was the treatment, etc.) I know everyone is different, I am just curious about what to expect -- even after reading all of the possibel side effects i have read that a rash is somewhat common, but I read that people go right back to work pretty often with no horrible SEs.

Thanks!!

Tex

Tex

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barry_g's picture
Replies 7
Last reply 10/11/2017 - 8:21am
Replies by: barry_g, jenny22, Anonymous, jennunicorn, Jamie1960

I'd appreciate any information on whether a viable option exists to surgical excision of facial melanoma in situ.  Is laser surgery an option?  I'm a bit freaked out by the prospect of facial scarring, even when a plastic surgeon performs the excision.

Thanks

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jrtufo's picture
Replies 7
Last reply 10/9/2017 - 2:34pm

For those of you on now or previously on (thank you trial folks!) the MEK TAF combo:  How long were the side effects with joint pain and inflamation with you?  Just started this combo and have already had to reduce the dosage due to skin reaction-now a week later I've got the joint and muscle pain...Trying to catch a break here!

JTufo

JulieT

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jetdoctor67's picture
Replies 7
Last reply 10/12/2017 - 5:54am

Hello,

Well my story is I was recently diagnosed with nodular melanoma (on my ear). My dermatologist removed most of the tumor with a shave biopsy on my left ear and was told the tumor was .04mm in size and .65mm deep undetermined (meaning the biopsy did not get the root of the melanoma so not sure how deep it is) and my clark stage is 1B.
My dermatologist referred me to the University of Chicago to have a melanoma specialist provide additional treatment (I'm told any tumor above the shoulders you have to see a plastic surgeon). Well the initial appointment was Sept 26th with the surgeon and he wants to remove the rest of the tumor and do a SLNB. My surgery is scheduled for October 25th.
He told me not to worry, but I feel like he tells everyone that. My wife also tells me not to worry but to be honest I'm shaking in my boots . A month ago I knew very little about melanoma and after much research and reading message boards this disease or "Beast" as it is referred to is nothing to take lightly.

If anyone is willing to share their story...I'd much appreciate it!!!

Thank you,

Terry

 

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