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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BrianP's picture
Replies 13
Last reply 8/29/2015 - 2:32pm

As many of you know I have been on a sequential trial of ipi and nivo for the last two years.  I started the trial with 2 tumors in my abdomen.  Those two tumors are now about 50% of what they were at about 2 and 1 cm.  I had my last trial infusion of nivo on Wednesday.  For the last couple months I've been thinking about what to do at the end of this trial.  All along I've been thinking about continuing treatment for at least another 6 months to see if more data becomes available on durability and recurrence of patients who have stopped treatment.  I traveled down to Moffitt a few weeks ago and talked with Celeste's favorite Doctor, Dr. Weber.  His recommendation for me was to stop treatment.  He primarily based this recommendation on his first nivo trial.  He said he had 15 patients who either made it to 2 years or made it a significant time before having to stop treatment due to side effects.  Of these 15 patients none have had a recurrence.  I didn't ask him how long it's been since these patients stopped treatment but I would imagine they are in the 1 to 2 year range now.  He also pointed out those patients were on a lesser dosing schedule than I've been on.  I asked him why so many patients who respond seem to have a response like me rather than a complete response and he said it appears that our immune system "walls" off the melanoma.  His believes that the nivolumab should be given to maximum benefit (achieve NED or achieve stable disease) plus 6 months. 

I have my next scan in about a month followed by a CT guided biopsy.  In the meantime I guess I'm having a "vacation" from nivo.  Based on the biopsy results will determine my next course.  If it comes back as necrotic I'll be done with treatment.  If it isn't necrotic I'll be looking at resecting the remaining tumors.  Dr. Weber said don't be surprised if it's not necrotic. 

Anyway, just wanted to share Dr. Weber's thoughts with those in the same boat as me.  Coming off the drug cold turkey is not an easy thing to do, especially when you are virtually experiencing zero side effects.  If anyone has had any similar conversations with their doctors I'd be curious to hear them.  I know Laura's Dr. Hodi has a very different take on this. 


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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 2
Last reply 8/29/2015 - 8:48am
Replies by: stars, Linny


i have a red - light brownish streak on my thumb nail - it is towards left side, not from the cuticle but starts at the curved outer line of the White lunula which is not affected. It's been there for about 4 months I have white skin. Took a while to get dermatologist appointment - finally he said yesterday we need to watch it and to come back in 10 weeks, is he suspecting melanoma? If yes, then 10 weeks seems like a long time...Should I ask for biopsy earlier? He said it was longitudinal something I sadly forgot the exact name. I feel very worried! 

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AshleyS's picture
Replies 8
Last reply 8/29/2015 - 7:23am

I met with my doctor at MD Anderson. Good news! My scans are stable (after 3 ipi/nivo infusions, 1 ipi infusion, 5 nivo infusions). There's a really good chance that anything still showing in the liver is just scar tissue.  They are going to ultrasound a spot I feel on my chest to be safe - it's kind of covered by my port on the scans. My thyroid is also super out of whack because of the meds, which explains my fatigue and weight gain. I'll go on meds for the thyroid. But overall, AWESOME news! 

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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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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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So this discussion hasn't come up in a while.  Do side effects have any correlation with overall survival?  This abstract says it doesn't.  Also states that taking corticosteriods don't have an impact on overall survival.  Would be interesting to see the whole article.

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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....


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Anonymous's picture
Replies 12
Last reply 8/28/2015 - 12:44pm
Replies by: casagrayson, Anonymous, Janner

Hello Everyone

I'm so desperate emotionally and have no one to talk to so this was the only place I could register and actually have someone listen to what I have to say. The fear of having melanoma is ruining my life. I have started to do poorly in school and have lost all my friends because I have become a depressed mess. 

I have not yet been diagnosed with melanoma but somehow I have convinced myself that I have melanoma. 

This is how it all started. I'm 25 years old male. 

I first noticed this mole 3 years ago when I had a sudden sharp pain on my thigh and looked and noticed a mole there. I'm not sure if I had it before or not. The mole is flat and not raised. The mole sometimes itches and hurts when I press hard on it. It feels like the muscle under the mole is sore. I have convinced myself that I have melanoma but since I have extreme anxiety and fear of cancer I didn't see a dermatologist in the past 3 years but I finally decided to get over my fear and see a dermatologist. My appointment is on August 11th. 

I showed the mole to my family doctor and he said he doesn't feel concerned unless it gets bigger. The mole hasn't really gotten bigger in the past 3 years, if any, the change is very minimal. My mole is 3-3.5mm in diameter and is brown with a black center. No history of melanoma in my family. 

What scares me is the fact that the mole itches, and looks exactly like Google images i find of melanoma. The edges of my mole are not defined. If this is in fact a melanoma what is the latest treatments? I have read some articles about some amazing new treatments but I'm scared the fact that i waited 3 years might have caused it to go deeper into my skin. 

I know this forum is for people who have been diagnosed with melanoma but i just feel so lonely and this is something I can't talk to anyone about because they think I'm fine. My parents, my friends think I'm crazy. I have even seen a psychologist and i'm not getting any better. I'm depressed and have basically locked myself in my room. 

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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. well!!!


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


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....


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