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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jag's picture
Replies 10
Last reply 12/1/2018 - 9:05am

Hello Everybody,

My name is John and I am sorry I haven’t posted in a while long time.  Back in the 00s and early 10s, I lived on this board, one look at my patent and you can see why,  Anyway, I feel guilty coming here with good news but I remember desperately searching for hope given my dire circumstances.  In the battles there is nothing worse than being “an inspiration” that just means you are surviving a lot of sh*t,  Nobody wants to be an inspiration.  Life is too good for me now to be an inspiration.  The real inspirations are all of the people posting here daily just trying to stay alive financially struggling and still giving to others despite their pain and circumstances and amazingly living mostly normal lives.  I’ve become another squirrel trying to get a nut, pay the mortgage, get dinner ready, put the kid to bed etc,

But, then there are always stories of hope, so here’s a little bit of hope for you.

https://www2.vet.cornell.edu/news/20181031/john-gallagher-95-dvm-00-and-...

Stay strong, keep breathing and fight like hell.  People want you to stay around for a bit.  God doesn’t need more melanoma patients, he has enough.

All the best!

Insert Generic Inspirational Motto Here

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Wenkell's picture
Replies 4
Last reply 11/29/2018 - 2:02pm
Replies by: Wenkell, A, JuTMSY4, JCD17

Hello!  I'm wondering if anyone has had a toenail biopsy.  I've had many skin biopsies and surgery for melanoma in situ, but now I've got a suspicious toenail that needs to be biopsied and I'm kind of freaked out.  It sounds terribly painful and I'd like to have an idea of what I'm in for.  Any info is appreciated!  smiley

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mrsaxde's picture
Replies 5
Last reply 11/28/2018 - 9:21pm

Up until now I've had many good things to say about NIH. But they really irritated me today.

At my last follow up in September they set up my next scans the same way they had been doing it. Brain MRI and chest CT one day in the late morning. Abdomen and pelvis MRI the next evening, so there would be at least 24 hours between contrast injections.

I get over there today, get my blood work done, have a little breakfast and hang out in the atrium for a while, then head for my MRI. After I get checked in the woman at the desk says "You're not having contrast today, so you don't need an IV." I wasn't sure I had heard her right -- I always get contrast. So I didn't ask about it.

Then the tech came to get me. She said, "You're not having contrast. That's very unusual. Do you know why? Are your kidneys ok?" I had already received my blood work results and my kidney functions were fine. "I'll double check upstairs," she said. A couple of minutes later she came back and said, "Nope. No contrast today. And none tomorrow either."

I've been trying to find out why, but my doctor hasn't answered me yet. I don't know whether this was the way it was planned at the last follow up and no one told me, or if something changed in the meantime. All I know is that if there's no contrast involved I could have had all my scans on one day and saved a 220 mile round trip.

I don't know if they'll say I'm still stable when I see the docs on Thursday. I suspect they won't. The nodule below my navel, which they said has "been there," has gotten bigger and is visible under my skin. I call it my "baby bump." I've also had increasing shortness of breath, a mostly dry cough, and for about 2 weeks now some mild to moderate discomfort toward the middle and bottom of my right ribcage when I inhale. I'm ready to go back to Dr. Sharfman, and maybe make a trip to NY to see Dr. Weber and see what they think. I've only dealt with NIH since this spring and I think it's time to hear from another expert or two that I have access to.

-Bill

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Tracyyy's picture
Replies 3
Last reply 12/3/2018 - 3:51am
Replies by: Tracyyy, WithinMySkin

Hi, my mother had a CT today which showed enlarged hilar and mediastinal nodes in her chest and the oncologist immediately sent her for a PET/CT on Thursday. I was hoping so much for stable or clear results, now I am worried that the treatment has stopped working. She is on a trial Dab/Tram + spartalizumab immunotherapy /or placebo. In the end of summer she had pneumonitits, is it possible that those nodes are inflamed due to some infection....I really hope so.

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Zap_'s picture
Replies 4
Last reply 11/29/2018 - 11:26am
Replies by: MMH, Zap_, WithinMySkin, SABKLYN

Hi everybody,

Would like to get your opinion on what the next step would be in my case (T1b).

I have a swollen lymph node on the left side of my groin (oppposite side of the NEGATIVE SLNB) and another one on the right side (same side of the SLNB). I discovered the first one on the left since was painfull while running, surgeon did ultrasound and indeed it was swollen and recommended to follow with ultrasound; this was more than one month after my SLNB (early june 2018)

About two months later after the first one, I felt pain on the right side as well after some weeks of hard training (while the one on the left became more painfull), ultrasound showed a swollen node on the right side, while the one on the left was still there (left side 7mm, right side smaller). Surgeon suggested to follow up in 3 months. I have one more month to wait for my follow up, but I can feel that both sides are still painfull, completely stopped exercising and the pain is even worst. The one on the right side I cant feel it due to the scar tissue of the SLNB, the one on the left side seems to be bigger (difficult to say).

Have been trying to keep it cool and want to think that I have been quite successful till now, but the pain keeps reminding me that something is wrong and mentally begins to be difficult to cope with it.

I have had swollen lymph nodes before due to excesive exercising and injury (e.g. one swollen lymph showed in my PET-CT behind my knee but then disappeared), but that was far from the original melanoma and went away in 1-2months.

If somebody could advise, I would appreciate. I have done lots of research regarding staging and procedures before my WLE and SLNB, but did not any research beyond stage 1 (I am T1b). 

Would appreciate any suggestions, 

Thanks in Advance,

 

Details of Melanoma:

Malignant melanoma (spizoid), Biopsy 9th of April 2018.
- Max. Horizontal size of tumor 0.2cm
- Breslow Tumor depth 0.1cm
- Clark’s Level IV
- Mitotic Activity 3.8 per square mm (9/10 HPFs)

- 40 YO male living in Asia.

- PET-CT Scan midd April 2018, clear.

- SLNB early June 2018 Right Groin, negatibe.

 

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Raco's picture
Replies 6
Last reply 12/5/2018 - 2:40pm

Anyone familiar with Desmoplastic (spindled cell ) Melanoma

and what does it mean.  Iam helping my sister get more info Asher Husband now has this diagnoses 

thanks for any input?

RACO (Robbie Borum)

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SRVilly's picture
Replies 8
Last reply 11/29/2018 - 6:45pm

Hello all!

I hope you all had a wonderful Thanksgiving and are enjoying the holiday season.  

A little back story...I was dx in Dec. of 2017 with Stage 4 with mets to Liver.  I started bi-weekly treatment of Opdivo only in Jan. 2018 (Opdivo only due to history of coliits).  I have had little to no side effects (except for my thyroid taking a dump in June), and I have had a complete resolution of all liver mets in my last 3 PET scans. However, about a month ago my Red blood cell count and Hemoglobin have been taking a nose dive. I've been on Iron pills since and my onc ordered an endoscopy and colonoscopy for last week.  The GI Dr. said my stomach was clear, with no signs of ulcers, and my colon was clear with no signs of active colitis. He took some biopsies just to check if there was any microsopic signs, but he didn't think the anemia was due to anything stomach or colon related. I have another PET planned for Dec. 14th to take another look around.

I have been reading about side effects of Opdivo and anemia is not a well documented side effect.  I was wondering if anyone has had any anemia issues due to the opdivo and what solutions helped resolve the issue.  I have an appt and infusion (if counts are back up) this week and I know we will go over this, but I always like to be a little informed if there are any issues before we meet.

As always, thank you so much for your help and well wishes . This forum is an invaluable resourse that I rely on daly.

Have a wonderful week.

SRVilly

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Raco's picture
Replies 9
Last reply 11/26/2018 - 1:20pm

Need feedback on Path report. Here below.

My Sisters Husband has just Diagnosed with Demsoplastic ( spindled cell ) Melanoma.

As we all know who are in this club how devastating your initial findings are. 

I encourging my sister and brother in law  to sign up on Melanoma.org and I hope they will. 

thanks ALL  Raco (robbie borum) 

10.24.18

Right Cheek, excision
• Desmoplastic (spindled cell ) Melanoma
• Maximum Thickness :  4.35 mm
• Ulceration – not identified
• Microsatellite – not identified
• Peripheral margins;;  involved with invasive and IN Situ Melanoma.
• Deep margins::  Free invasive Melanoma (closed Margin 0.7 mm)
• Mitotic Rate – Less than 1 Mitoses per square MM.
• Clerks Level ;  V (melanoma invades subcutis)
• Lymph-Vascular – not identified
• Neurotropism – presemt
• Infiltrating Lymphocytes – present, non – brisk.
• Regression – Not identified

• Pathologic Stage: pT4a ( melanoma greater than 4.0 MM in thickness, no ulceration.)   

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guynamedbilly's picture
Replies 2
Last reply 11/25/2018 - 11:09am
Replies by: guynamedbilly, Bubbles

On Tuesday I had my regular CT scans and a followup with my surgeon.  The radiologist hadn't completed their report yet, but upon reviewing them himself my surgeon said I probably have a small met in my liver.  The radiologist report was put online friday and they said they also thought I had a new liver met.  If it is, this will be my first distant Met after I've already had two local recurrances.  I'll have a needle biopsy sometime this upcoming week to confirm it.  My mel did not have the Braf mutation.

 

I've completed one year of Nivo, so I suspect the next line of defense is Nivo+Ipi.  Is there a more recent treatment I should ask about?

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 and my name is Cole and I have never posted here before but I am grateful for this forum as it is help me so much since my diagnosis on June 2018 .  I am currently stage for melanoma with cancer in my lymph nodes that is being treated right now with a combination of nivo and Ipi.  my main side effect is fatigue and a horrible coding and threw out my mouth that makes it almost impossible to enjoy food .  I hate to keep bothering my doctor and was just wondering if anyone else had this and how they dealt with it thank you all 

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KarinaJ's picture
Replies 13
Last reply 12/1/2018 - 4:11am

Hello! I was diagnosed with stage 3A back in October. I had a mole on my left cheek. My dermatologist removed it. It was 1.3mm non-ulcerated with a mitotic rate of 1.

After that I had a WLE and a SLN in which they removed 2 lymph nodes and 1 of them had microscopic melanoma cells in it. My oncologist recommended for my not to do a Complete Lymph Node removal because according to him, it does not improve the survival statistics.

Since then I had a clear PET/CT scan, although they found a NON-hypermetabolic 4mm nodule on my left lobe on my lung. Doctors were not concerned about it since it didn't light up but they will keep monitoring it. I will start adjuvant Opdivo treatment on Nov. 30th.

The thing is that lately I've been feeling mad, angry, moody. I feel this isn't fair. I'm ready to fight and everything specially because I want to be here for my 2 little girls and my hubby. The NOT knowing how am I going to respond to the treatment it just adds up to this "anxiety" I've been feeling. I know treatments are better that ever and I'm lucky to have access to these treatments but it still worries me to be in this situation. 

I'm currently going to the UT Health Center in San Antonio, Tx which now is working in collaboration with MD Anderson in Houston.  I've called MD Anderson in Houston twice just to ask about if I should go all the way to Houston and they told me the offices in San Antonio have access to the same procedures and trials so I know I'm in good hands. It's just overwhelming and I feel really bad about all this! :( It's too much to process and I guess I'm very afraid of dying at 34 and leaving 2 little girls without a mom so soon. Sorry I guess I just had to vent with somebody that truly understands what is like going through this. 

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anthonyle45's picture
Replies 5
Last reply 11/25/2018 - 12:30pm
Replies by: MelanomaMike, Toby0987, anthonyle45, Anonymous

So as long as I can remember, I’ve always had this mole on my back. I’m not sure if I was born with it or it developed but I think I first noticed it when I was 7 or 8. I’m currently 18 today. I’ve had no problems but when I started looking into it, this mole is like no other. Maybe it isn’t even a mole. It hasn’t grown or that I know of, and it is the size of a pencil eraser. Should I be worried? It has some characteristics of melanoma, the asymmetric and weird edges but it hasn’t grown and does not look like any melanoma pictures I’ve found online. Here’s a picture for reference. https://ibb.co/fj1GqV .im not sure if I should be worried or not, it’s been there forever without any troubles.

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sing123's picture
Replies 7
Last reply 11/29/2018 - 7:01pm

Hi all. My doc is recommending radiation from the top of my head down my neck to where my positive lymph nodes were. 

Has anyone had experience with radiation that they can share? What if any side effects did you encounter? 

I’m reaearching proton vs. photon.  I can only get photon where I live. Still I’m willing to travel to get the proton radiation if the side effects are quite a bit less. And if my insurance covers it. Alternatively there are some clinical trials right now using proton. 

Any thoughts on this? 

Hope everyone is greatly enjoying their Thanksgiving weekend! 

 

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/24/2018 - 10:13am
Replies by: SABKLYN

I recently had 3 moles removed for testing.  2 of the 3 moles came back with a MART-1 immunochistochemical stain.  Does this mean they are positive for melanoma?  Or not necessarily?  

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Wicked Witch's picture
Replies 12
Last reply 12/4/2018 - 11:13pm
Replies by: lkb, Wicked Witch, Linny, Gene_S, Anonymous, Johnjk04

Hello! I'm new to this craptastic world of melanoma. Nice to meet you all! I don't have any specific questions . . just wanted to share my predicament in case any of you have had a similar experience.

In September of 2018 I felt what I thought was another tick bite on my scalp, on the back of my head. I have "natural 80s hair" - super long and super thick, and I wasn't shocked at what I thought was just a bump from a bite. At least 2 months went by and I grudgingly made an appointment with a dematologist. When I got in there I said "I'm so embarassed, I think there is a tick head stuck in my skull. This sore won't heal." The "bump" was now about the size of my pinky finger nail, raised, bleeding, scabby and itchy. As soon as I flipped my hair over the dermatologist sucked in her breath and asked "Can I take a picture of this?" I knew I was in trouble. It was huge. It was black. It was angry. 

I was sent to an oncologist, do not pass GO. As soon as my oncologist looked at my head, there was no need for a punch biopsy - I was scheduled for surgery to remove the growth. The one doctor told me "The melanoma of even 5 years ago is not the melanoma of today." They cut it out about a week later and I woke from anesthesia to the wonderful news "It's definitely melanoma". 

The doc scheduled me for a PET scan, and when they called to tell me of the when and where I asked if they could move it up a little sooner? II was anxious and didn't want to wait a week. Sure, they said, can you come in tomorrow? Absolutely! I went in for the PET scan terrified but happy to finally have an answer to the dreaded "Where else is it?" The tech put in my IV and was just about to inect me when another tech came in and said "Stop! Insurance hasn't approved it yet!" Within 30 seconds they had yanked my IV and kicked me out the door. Eff you EviCore, the "company" Aetna uses for it's approvals. I'll refer to them as EVILCore from now on. I call EVILCore who tells me no PET scan for you, not until a lymph biopsy is positive. Go to hell, eviCore (formally CareCore, nice lawsuit by the by. After you Google the CareCore lawsuit, Google all the lawsuits Aetna has had for denial of services for cancer paitents.)

I stopped into my surgical oncologists office for a wound check (this hole in the back of my head is nasty) and while there, I got my pathology report. All I know is that it was the worst report card I ever received. The oncologist's PA however told me "This is NOT a death sentence. Melanoma has come a long way." The tumor was 7.5mm, it was pretty active . . I got all the bad news. 

Docs got me an MRI and a CT. On a Friday of course, so I had to sweat it out over the weekend for the results. Those were the longest couple of days I've ever experienced. The PA called me Monday . . it wasn't in my brain and it wasn't in my lungs!!! There were some nodes of "concern" in my neck however. I was not surprised in the least. There is no way that nasty thing was as angry as it was and was going to go queitly, I'm sure it's in my nodes. The PA said she had been battling with my insurance company (again, eff you Aetna and EviCore) but a PET scan was not going to happen. So they schedued me pretty quickly for a needle biopsy. 

I am also scheduled for surgery on November 29th, so I went to meet with my surgical oncologist. I love that guy. :) He's confident and caring and his team is rediculously kind. They are going to do the wide incisions to take more skin from around the initial site. Then I went to meet with the plastic surgeon who will be jumping into my surgery after the oncologist to seal up the hole. We talked about a possible skin graft or "fake skin". I then got another kick in the pants - he flat out told me "I suggest you make a hair appointment and have your hair significantly reduced before the surgery next week, because I'm quite sure I'll be shaving your head". Did I mention I have huge, really long hair? Well, I cried for a little bit but it's just hair. I called a local salon and I have an appointment the day before my surgery to have the hair taken for Locks of Love, and whatever is left I just pray I still have after the next surgery. 

The needle biopsy the next day was not fun but I just kept reminding myself of all the tattoos and piercings I have and kept mentally berating myself to suck it up. I then had an appointment with my new medical oncologist moving forward. This doctor was AMAZING. She went over my pathology report line by line, then she went over my body freckle by freckle. We discussed therapies and prognosis and research and I came out of that appointment feeling optomistic for the first time since this nightmare began. 

So I have a few days before the next surgery. I'm okay with surgery, I'm a nerd and I find everything facinating. Plus I get pain pills and can lay in bed playing video games. No problem. ;)

I read somewhere on a cancer blog that this can be the most horrible and yet the most beautiful experience of your life. And that's 100% accurate. I'm so scared, I'm so depressed . . I cry and shake and feel sick to my stomach. (Hey at least I'll finally lose some weight! Look for the positives, right?) But I can't believe the kindness, caring and love I've received.

My coworkers and my family and my friends have been  . . I can't even find the words for how wonderfully supportive they have been. Know what one of my biggest fears is? That people go though this crap alone. I want to help whomever I can, and if any of you have any suggestions for how I can do such, please let me know.

Thank you for letting me babble. And it's a pleasure to meet you all. Let's fight this battle together. 

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