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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ET-SF's picture
Replies 7
Last reply 8/28/2015 - 10:12am

Hi all,

Good news!  The path reports have come back, and it appears ET dodged a bullet for now.  Her SLN biopsy came back negative, and the WAE margins were confirmed clean.  We still haven't gotten to the PET/CT full body scan, which has to be ordered up by an oncologist.  We don't even have an oncologist yet, but we're trying to set up wit the ONLY melanoma specialist/program/clinic on our insurance plan.  Meanwhile, we're wrapping our heads around some big questions.  Among these....

INTERFERON THERAPY!  Considering the size of the tumor (Breslow 9mm) and other findings of the initial path (microsatellitosis, lymphatic invasion, perineural invasion), I think ET would qualify.  There's also a Phase III clinical trial for a multi-antigen vaccine, but I can't find info as to its efficacy so far, and ET could end up in the control group, getting nothing.  Interferon would be something she'd be guaranteed to receive, with limited improvement of her odds.  My question to all of you who have undergone this therapy is...

Would you do it again?

Or would you take a stab at the vaccine trial, knowing that you might end up in the control group?

(I believe it's either/or, as interferon would disqualify a person for the vaccine trial.)

Thanks for any input/insight you can offer!

SF and ET

 

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mrsaxde's picture
Replies 4
Last reply 8/28/2015 - 9:55am

I saw my oncologist today, for a follow-up after the second dose of Keytruda that I received two weeks ago.

Dr. Melnyk, my new oncologist at the Tunnell Cancer Center here in Delaware, became my oncologist because Dr. Asif moved to Howard County Maryland. Her background includes work in melanoma research, so I made it clear that I wanted her to take over, rather than Dr. Asif's replacement, who I understand is a freshly minted MD. Nothing against that, per se, but I like the idea of someone who has been actively involved in melanoma research watching over me.

I mention all of that because today was only the second time that Dr. Melnyk has seen me. I was still under the care of Dr. Asif until after my first dose of Keytruda, and Dr. Melnyk had not seen the spots on my back before I started with Keytruda. She first saw them two weeks after my first infusion, when I had already noticed that they had begun to change, for the better.

Today she told me that I was responding well to the Keytruda, and, that it appeared to her that the spots on my back were no bigger than they were three weeks ago. In fact, she said they might be a little smaller. I know for a fact that they are not nearly as raised and thick as they were, but she never saw them at that point.

Now it's on to my next infusion next Thursday, and a CT scan a week or two after that. Hopefully the lesions in my lung are having the same response that my skin is having.

Before she left the room today, Dr. Melnyk told me something I already knew, which was that they are seeing strong, long lasting responses to Keytruda. But then she said something that no one else has said to me yet.

"We just might be able to rid you of this."

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JoshF's picture
Replies 21
Last reply 8/27/2015 - 5:33pm

I know many here would say MRI is crucial for brain surveillance but my onc says without symptoms that a CT and/or CT/PET would suffice. I question whether I should just ask for it or find another onc who would be more agressive with scans.

Do symptoms usually present themselves? What are common symptoms?

What is likelihood of Stage 4 getting brain mets?

Are treatments effective for brain mets? Radiation? Does ipi, keytruda and others pass the blood-brain barrier?

I'm giving myself a lot of stress just thinking about this lately. I feel fine but we all know what stress does to us...I'm just in an anxiety phase lately and just trying to work my through. Posting here and getting feedback usually helps.

Thanks...be well!!!

Josh

Let's work for better treatments....for a cure!!!!

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erin123's picture
Replies 6
Last reply 8/27/2015 - 11:24am
Replies by: AJHP, erin123, Janner, stars

Hi,

I am new to this site. I was just diagnosed with melanoma in June. I had one spot on my chest that was 0.42mm and Clark level II, and another on the bottom of my toe that was in situ. I've had wide excision done on both of them now. I used a tanning bed in March for about a month recommended to me for other medical reasons which I won't go into and now realize what a horrible idea that was. After a month or so I noticed several moles had changed drastically. Now I am noticing SEVERAL more that have changed. I can't get this off my mind and I'm so scared and can't stop thinking about it. I know that my lesions were detected very early, but since things keep changing I can't stop checking my skin. I need to know how to relax with this new thing in my life but I can't figure out how to. How often should I do a skin check? Is it possible that these tiny spots are nothing to worry about. Some are very tiny but irregularly shaped and colored. Is there anyone out there who can give me support? I went to a dermatologist who was very non-chalant about my other moles but went back to my doctor today and she said they had to go. I'm 26 years old and can't believe this is happening to me. I've been told I don't fit the typical profile for melanoma. Dark hair and eyes, light olive skin, not very many moles and it doesn't run in my family. Please help. I'm scared out of my mind....

Erin

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Anonymous's picture
Replies 1
Last reply 8/27/2015 - 10:11am
Replies by: ET-SF

I have a friend who just got diagnosed. They are being worked up in the next few weeks - scans, lymph node biopsies, etc. Stage is currently unknown. They are anxious and scared and the work up is over the next couple of weeks. They are tired of being looked at "as a cancer patient". I want to do something for them without overwhelming them with this new diagnosis. Any advice would be appreciated from anyone that has melanoma and could tell me what it was like being diagnosed and what I can do to help. Thank you. 

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Anonymous's picture
Replies 5
Last reply 8/27/2015 - 3:57am
Replies by: stars, CHD, Anonymous

Looking for some help/guidance or analysis on the following.

 

I am a 35 year male.  I saw the dermatologist last week (my first visit ever) for a routine exam.  He noticed an area of suspicion on my back and scaped it off to be sent away for analysis.

 

I recieved the results yesterday and picked up the pathology report also yesteday and wasn't expecting what he told me.  I have a follow-up 3 weeks from today to have more cut out to help ensure it is removed (Wide local excision with 1cm margin).  They also stated I would need to have checkup's every 6 months for the next 3 years.  They did not give me a stage.  In addition to self screenings, if there anything else I should be doing?  Do I need to have any additional test to ensure this has not spread?  I have a bit of an idea of the diagnosis below from my conversation with the doctor and research online.  Just looking for a bit of help on this as I am a bit nervous.  Also, what does the following statement indicate?  "It was difficult to distinguish this melanocytic lesion from a severely dysplastic compound nevus from invasive melanoma"  Thanks in advance for any guidance here and if there is anything else I should be doing or concerned about.

 

Diagnosis

Skin, left inferior upper back

Malignant melanoma, superficial spreading with focal invasion

Breslow's depth: 0.4mm

Clarks Level III

Ulceration: Not identified

Mitotic rate: <1/mm2

Lymphovascular invasion: Not identified

Features of regression: Not identified

Lymphocytic Host Response: Brisk

Coexisting nevus: Possibly identified (dysplastic nevus)

Margins: Free of melanoma

 

Clinical info:

Left inferior upper back - Shave, Reddish Brown variably pigmented macule, neoplasm of uncertain behavior vs dysplastic nevus

 

Gross Description

Specimen recieved in formalin identified as "Left Inferior Upper Back" and consists of a shave biopsy measuring 6x5mm.  The specimen is bisected and totally submitted in one casette

 

Microscopic Description:

There are irregular, junctional, melanocytic nests.  Additionally, there is an area that has an increased number of single unit melanocytes and a "zipper sign" is noted.  In the dermis, there is a focal area with similiar appearing melanocytes compatible with focal invasive melanoma.  Also in the dermis, there is chronic inflammation with melnophages.  It was difficult to distinguish this melanocytic lesion from a severely dysplastic compound nevus from invasive melanoma.  Multiple levels were examined.

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/27/2015 - 3:28am

I'm a 17 year old female. Blonde hair, blue eyes, and fair skin. About a year ago, this mark showed up on my wrist. It was extremely itchy. After a lot of research, I realized it looked like a melanoma. It was asymmetrical, multicolored (brown, black, and a dark red color), had a ragged border, and was slightly raised. The skin around it was really red. I had multiple people tell me to get it checked out because it looked like a melanoma. But after a few weeks, I scratched it off, so I kind of just forgot about it. I've read that it is possible to scratch them off, but Ive also read that it isn't. There is now a light tan scar on my wrist where it was. 

 

Now, a year later, I haven't been feeling well. I noticed a painful lump in my left side, right below my ribs. I went to urgent care and the doctor said it's most likely a swollen lymph node. She didn't feel any other swollen lymph nodes. The day after I went to urgent care, I found a swollen lymph node in my neck. I also have a sore on my on my scalp that has been there for about 6 months and won't heal. It bleeds a lot and is sort of crusty. I didn't think it could be related, but after doing more research the past few days, I found out that many people who have melanoma have sores that don't heal. This is every symptom I've had in the past month or so: Headaches, dizziness, nausea and vomiting, severe fatigue, swollen lymph nodes, pain between shoulder blades, pain in lower back, and sore legs when walking, even short distances. I've had a low-grade fever for a week. I've also been coughing occasionally and experiencing shortness of breath. My symptoms have gotten much worse over the past week. I've been staying up all night, vomiting. I also had a nosebleed that started out of nowhere, though I don't know how that could be related. The doctor didn't do anything about this, except tell me to keep an eye on the lump in my side.

This was taken when I first noticed it.

https://photos.google.com/photo/AF1QipPBZ0SaBxINzI-g_fp-DKf6I7aDxquPiEgt...

This was taken a few days before a scratched it off. 

https://photos.google.com/photo/AF1QipOpewPRlmgkNoTCXe3Zkg0g2WvFPdaNAPON...

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CHRISNYC's picture
Replies 1
Last reply 8/27/2015 - 2:06am
Replies by: kylez

I was considering relocating to another state.  however I'm on study treatment  ipi/nivo and it looks like it will be on going. For as long as it works...   That being said has anyone been able to transfer treatment.  My doctor said I'm not going anywhere but I would like to explore possible alternatives.  Thanks all 

Chris. 

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Speedster's picture
Replies 11
Last reply 8/26/2015 - 11:28pm

Today I was patient #1 at Baylor Samons for the Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III Clinical Trial.   Designed for Stage III patients - resected tumors, NED to determine if either is effective as an adjuvant therapy.

The trial will have 800 participants across the country.  Who else is in and what are you experiencing as you ramp up the treatment? 

Nothing noticeable for me after the first treatment today.  

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/26/2015 - 3:15pm
Replies by: Marianne quinn, Anonymous, Thandster

First off.. what does "pre-melanoma" mean?

Second, my husband just noticed a grape size bump under his skin near a spot that once had a pre-melanoma. It was removed but not in that big circle around it that they did on the main growth.

He finished ippy two months ago and just got a spot biopsied from his liver. They think it is melanoma so the plan is to go on opdivo when the patholgy comes back.

Will they have to do a big circle removal (wide area something) on this spot? Or are bumps under the skin next to the incision a typical thing?

I wish i knew more about cancer to understand what its going on.

Rebekah

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/26/2015 - 1:05pm

I just found out i have two liver mets 8mm and 5mm.

What is the standard treatment for these?

 

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Randy437's picture
Replies 7
Last reply 8/26/2015 - 10:59am
Replies by: kpcollins31, pookerpb, CHD, Anonymous, BrianP, Randy437

Are CT scans as effective in finding mets in the small intestine as they are in any other area of the body?

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Thought it was interesting my biopsy last January says the left supraclavicular tumor is braf wild type. Just found that out from my NIH records cause couldn't get the report from the saint Louis records folks. Well maybe I could have but they said they didn't have it so would have had to go to another building.

Anyway my first biopsy in June 2013 of the t10 vertebrae said it was the braf vc80001 mutation or something like that. Kind of explains why zelboraf in 2013 I was the docs only 2nd patient of over 1000 that progressed on it. Kind of explains why the taf Mek although it kept lots of tumors from growing some grew like crazy.

So I guess I have some tumors with probably a certain amount of the vc mutation or maybe that first test was not done right. The rest of my tumors are braf wild.

Kind of weird in my opinion but explains in my mind anyway why the braf stuff failed me so bad.

Justvthought some folks might find it interesting in their situation. Usually I heard it's the other way around. A person is braf wild and they become braf vc.

Artie

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dfeng's picture
Replies 35
Last reply 8/25/2015 - 7:34pm

Saw doctor yesterday. MRI brain clean. CAT for chest founds few very small spots that could not be identified what they are.

 

In my case, average one year left. Let's see how long I can make it. 

 

Three months treatment will start from as early as Thursday, depends on when my insurance company approves it.

 

Had four treatments Kemo 17 years ago, I think I am ready for any side effect.

D. Feng

My record of progress on the first ipi/nivo trial is here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/treatment-plan-made

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