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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momof4boys's picture
Replies 2
Last reply 8/28/2015 - 10:42pm

My scan last Thur showed 2 spots on my lungs and my lymph nodes were enlarged. Yesterday I had a brochoscopy to biospy the lymph nodes and preliminary results are saying negative for melanoma. I was wondering if anyone here has ever had histoplasmosis. I think this is what may be going on. Any insight would be appreciated. Thanks, Rachel

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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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AJHP's picture
Replies 13
Last reply 8/29/2015 - 3:57am
Replies by: dl2z12, stars, AJHP, ET-SF, Anonymous, CHRISNYC, CHD, Elliemae216

Hello! I am 25 years old and was just diagnosed with Stage 1A melanoma on my back 3 days ago. I am a little freaked out to say the least. I have fair skin, blonde hair, freckles, and a ton of moles so it has always been in the back of my mind that if skin cancer were to find anyone, it would find me. Luckily this gut feeling brought me to the dermatologist to get checked over- and ta-da! melanoma. My dermatologist made me an appointment to see a melanoma specialist surgeon this coming week. He will do the excision and then also maybe a lymph node biopsy? My derm said this would be up to the surgeon if he thinks i should get the biopsy or not. I am a stage 1A, and the tumor is .56 mm. No mitosis or any of that stuff, so I think I am on the luckier side of the melanoma spectrum.

I have some questions for anyone that can help! 1.) who has had a lymph node biopsy and can you tell me how that went for you? and 2.) Has anyone here had the same stage as me that has had more melanoma reoccur later in ther life? That is probably my biggest concern as of now, since I have a ton of moles and will now be paranoid of each one of them. I know I will be going to the derm every 3 months for a while to check everything. But I am worried I might have melanoma somewhere else on my body right now and might not even know it? Which brings me to another question, has anyone ever had more than one melanoma found at once on their body? Sorry for all the questions, I don't know very much about this cancer and am scared :(

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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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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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Anonymous's picture
Replies 4
Last reply 8/29/2015 - 11:02am

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 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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Elliemae216's picture
Replies 4
Last reply 8/28/2015 - 6:38pm

Last November I was diagnosed with a Stage 1 melanoma on my back.  The surgeon used local anesthesia, which ended up being extremely painful for me. My insison was 4-5 inches. The shots where horrible and painful, then the removal of the tumor.  Is it routine for this procedure to be under local anesthesia?  If so, I don't think I can endure another....

Ellen

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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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Anonymous's picture
Anonymous
Replies 4
Last reply 8/30/2015 - 10:34am
Replies by: ET-SF, 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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momof4boys's picture
Replies 5
Last reply 8/25/2015 - 6:39pm
Replies by: dfeng, BrianP, kylez

So I am awaiting a bronchoscopy this week to biopsy the enlarged lymph nodes in my chest and would like to think about possible treatment plans that way if it is positive then I can have a somewhat educated conversation about treatment rather than being confused. So I've already had ipi the 3mg arm of the ipi/interferon trial. I finished all doses. So I've been reading here the last 2 years trying to keep informed on different trials/drugs. So since I've had ipi already does that mean I wouldn't be able to do the ipi/nivo trial and is that trial even available. I live around Omaha and would possibly be able to travel some, it might be pretty hard to do that all the time I guess cuz of my kids but what other trials are showing promising? I agree with what Celeste told me about trying a trial first so an anti-pd1 doesn't disqualify me for something else. I would sure appreciate any and all thoughts about what might be a possible game plan from some of you stage 4 people. Thanks

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JoshF's picture
Replies 22
Last reply 9/1/2015 - 6:56pm

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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casey81's picture
Replies 2
Last reply 8/25/2015 - 3:29am
Replies by: stars, 273c

Hello, all.  For the past few weeks, I've delved into internet research trying to gain some insight.  Naturally, most of the answers I've found haven't been very comforting.

I've had two severely dysplastic moles excised, and two more that came back as mild.  I'm sure I have other that are mild, but I'd say maybe only two more.  Well, three, because I have a new small light/dark brown freckle on the side of my foot.  That one has me worried, but I'm getting it looked at this Friday.  In total, I'd say I have about 60 moles, including a few on my scalp.  Most are small and round, with about 5 being larger and a little darker.  My grandmother had melanoma on her nose about a decade ago.  Well, I think it was melanoma..she had a sore on her nose for years before she finally went and got treated for it.  

I say all of that because through my research, it's hard to find out where I fit in the spectrum of risk.  My derm said that I didn't qualify for FAMMM, but the criteria online suggests that I do.  Of course, I'm more apt to believe a doctor, but it's unsettling.  I tan decently (though not anymore, I avoid the sun like a vampire), and have dark brown hair.  I don't remember having a severe sunburn, but I've probably spent a collective hour in tanning beds years ago.  It seems like getting this cancer is unavoidable.  What kind of odds do I face?  Certainty?  A coin flip?  A roll of the dice?

This forum seems full of really kind, brave people, which is what encouraged me to sign up.  Thanks for listening.

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