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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Beezer's picture
Replies 5
Last reply 7/17/2015 - 5:21am
Replies by: Beezer, arthurjedi007

My poor sister is not doing so well right now, she was hospitalised a few days ago as she lost the use of her legs and arms, she had three doses of ipi and has just had one infusion of keytruda. She also had whole brain radiation done in February but we thought she had recovered from the mobility issues with the WBR but she seems to have relapsed again, we are so distraught right now, we not sure it's the keytruda which was started three weeks ago or is it after last ipi infusion or whether our poor warrior is losing her battle. She is due to have a second infusion of keytruda next week so we are worried they will not give it to her, please can anyone share any insights at all 

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TraceyN's picture
Replies 10
Last reply 7/19/2015 - 10:26pm

I am really concerned I am having so many issues right now, and I can't seem to get anyone to take me seriously??!!!!!!  I'm getting really frustrated.  I was referred to Nashville Skin & Cancer here in clarksville, and my doctor did'nt even do a proper skin check!!!!!  Did'nt look in my hair, my feet, privates, etc..., now I have sores all over my head that are scabbing and bleeding, I had a mole on my chest pop up and turn black, and started scabbing, and itching, and today came off.  I immediately put it in a ziploc bag, and ran to the skin and cancer center, and was told it's probably nothing to worry about, and threw my tissue in the trash???!!!!!!!!!!  Is anyone else having problems like this??!!!!  I tried calling Dr. Kelly at Vanderbilt, but he's gone now along with his nurse.  I am so worried because it was so scary when I was diagnosed in 2000, I had 4 surgeries in 5 months, and my right groin lymphnodes were removed, as 3 tested positive.  I was put on the cancervax clinical trial for 5 yrs, and it was closed proven not to be successful..  Uggghhh, I'm worn out, because I know how quickly this can get away from you if not being aggressive.  Any advice or suggestions I would greatly appreciate.  Thank You.

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Joe.Pro's picture
Replies 6
Last reply 7/16/2015 - 10:56pm

I officially begin the ipi/nivo combo next week at Mass General in Boston.  I'm ready to wake up my immune system and evict these cells outa my body!

Anyone else here having success with this combo treatment?  


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Eileensulliv's picture
Replies 8
Last reply 7/20/2015 - 5:05am

Things have been going pretty well for me on the ipi/nivo combo trial. I only got one dose of ipi because I didn't tolerate the combo much. So I have been on just nivo for a few months, and get my next scan August 6th.

My biggest side effect has been diarrhea. It has become the "new normal" for me, but has been manageable. I also have some fatigue, aches and pains, peeling hands and feet, and my hair has thinned quite a bit.  Lately I am feeling increasingly forgetful. Maybe it's just stress, but I wonder if it can be attributed in part to the nivo. It has become astonishing just how much I am forgetting lately. I've been forgetting appointments, tasks I was working on, even words! I will be talking with someone and trying to get a simple everyday word out. I can think of it and picture it, but I just can't remember the word. I swear it feels like I'm losing my mind!  Has anybody else experienced this?

I'm sure this is stress related and I'm just overreacting.  I will talk with my doctor about this, but I just thought I'd ask if anyone has experienced this while I remember to ask. :-)




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Came across this article about the scum-of-the-earth that prey on cancer patients:

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jamieth29's picture
Replies 6
Last reply 7/18/2015 - 12:03am

After looking for a trial for 3c resected for a month and a half I have some decisions to make. Last week I was contacted by moffitts trial nurse and was told that the last patient to be taken on their stage 3c/4-ipi/nivo ned trial failed screening...and I'm sorry for that person if your out there. They told me if I wanted the last slot and if I meet screening requirements I could get in. I'm actually writing this sitting on the plane to Florida from WI.

Last Tuesday I had a meeting with DR Jason Luke at u of Chicago about the checkmate 238 trial. Dr Luke made some valid points and made me realize he was the first "melanoma specialist" I have talked to after seeing 3 other doctor's. His opinion was the moffitt trial would be to toxic and there is no evidence that the combo would work in a 3c situation. There is evidence of ipi working alone in another trial that has shown a 25% increase in preventing relapse. Although the data only goes out to 2.74 years. There is info on nivo in small patient numbers that shows benefit. He thinks the less cancer the drugs have to go after the more toxic the drugs may be...but no one is sure of this.

My goal is to talk to moffitt which will be DR Abdul because DR Weber is gone 2 weeks and I couldn't talk to him until beginning of August... Figure out what I think is best. The trial at moffitt definitely would be tough as it is 2.5 years of flying to Florida every two weeks and the only way I could financially do it would be to go alone. I have no clue if this is possible. I would be getting treatment then have to drive myself back to airport and fly home. If the side effects are bad not sure this is going to happen. I would have to work as much as possible to afford this trial. The 238 trial is a good trial but I think moffitt may have better odds of working. The Chicago trial is one year of 2 weeks on 1 week off. I know of course nothing could work also. I am looking for anybody that has taken the combo in adjuvant setting that can give any advice. I have had 8 nodes involved already that were local and have up to 90% chance of relapse. The 238 trial is either ipi at 10mg/kg or nivo at 3mg/kg. The moffitt trial would be the combo for 4 doses every three weeks at 3mg nivo/1mg ipi then just nivo for 2 years every 2 weeks and not sure on that dosing. Anyone's thoughts and opinions are welcome. Thanks!


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Mrs.GL's picture
Replies 6
Last reply 7/16/2015 - 12:17pm
Replies by: Mrs.GL, Anonymous, Kim K, jessica_f, Janner

Hello - I am revisiting this site as I am going through a bit of a scare recently and was hoping to get some advise/thoughts, I appreciate the information you all have provided others.

I had a chest x-ray that came back with a small lung nodule. (My original MM diagnosis was 1mm clark level IV, neg SNLB). I insisted on a CT scan, that came back with a 4mm (not from original 3mm) and a 8mm some degree of airspace density may be inflammatory.

I have one PCP that says I have no reason to follow up on this and another that says if it were her she would see a pulomonary Dr just to be sure. Sometimes I feel I am overreacting -  I'm very confused. I have a referral to see a Pulmonary Dr. in Vegas.

Thoughts / advise please?


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dfeng's picture
Replies 50
Last reply 10/24/2015 - 9:33am

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:

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Steph001's picture
Replies 2
Last reply 7/16/2015 - 9:51pm
Replies by: Steph001, Janner

I had a biopsy done that came back as melanoma and was sent to MD Anderson. I had my wide local excision today. Today I was also given a report that the MDA pathologist did on the original biopsy. It differs just a bit from the report that the first pathologist did. Is this common? The Breslow depth and Clark levels are the same but they differ on mitosis, ulceration, vertical growth, radial growth, and tumor infiltrating lymphocytes. As far as I can tell these things don't make the diagnosis worse, is that right? 

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Rita and Charles's picture
Replies 12
Last reply 10/7/2015 - 11:25pm

HI All, 

It's like Christmas [ well sort of if you had a very grim Christmas] and we received Charles' medication.  Can anyone that takes this combo/ or has taken it share if you took it on an empty stomach or after eating for best "feel good" life??  

Does if make your tummy super upset?

Thanks - any comments are helpful!  

Good news, our first 5 months we got covered by a patient access $ pool - super nice gal at the pharmacy worked with us...........see, like Christmas?




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Jennycrn1's picture
Replies 27
Last reply 7/20/2015 - 6:55am

Forgive me--I looked back and didn't see this topic recently so I'm posting and looking for advice. I'm starting Interferon this week (Friday the 17th vs Monday the 20th). I'm looking for advice from anyone that has taken Interferon or is family of the Interferon taker.... How disruptive is it really to the day to day life? What real things can I do if I have bad symptoms to feel better?  What helps? What makes things worse? How soon after dosing would I start feeling bad? Can I drive myself alone back and forth to the appointments so my kids can stay home with a grandma? Should I dose in the mornig or afternoon? Sorry if I sound needy, but I'd like to hear from someone with real experience and not just the doc or nurse from the office with no personal experience. Thanks in advance, Jenny

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JoshF's picture
Replies 4
Last reply 7/16/2015 - 11:42am

I have Pet/CT on Wednesday. I must have forgot it was a Pet. For those familiar with my story, after I had surgery in January to remove the recurrence or whatever was left after ipi and IL-2 they did a Pet which was clear followed by a CT in April that was clear. Just not sure why another Pet so soon. Of course I'll ask. Think I was too excited last time to even think about it and now some serious scanxiety is setting in. As usual trying to rationalize everything going on in my head.


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

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CC19's picture
Replies 4
Last reply 7/13/2015 - 9:06pm
Replies by: CC19, Janner

Hello...I'm new at this so please bear with me.  I had a shave biopsy done at MSKCC on 6/1/15.  It came back melanoma with margins exceeding biopsy.  The pathology report was very brief and did not contain any other useful information.  I have an appointment on 7/15/15 with a surgeon to discuss path report.  And they have already scheduled my WLE  at the end July.  My question is......can they tell from a shave biopsy that the melanoma is a melanoma in situ ( because a shave biopsy is not deep) or will they biopsy the WLE as well to tell the depth of the melanoma?? 

Thanks :) 

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Anonymous's picture
Replies 5
Last reply 7/30/2015 - 10:11pm
Replies by: amandabren711, AshleyS, Anonymous, Kim K

I was notified about the melanoma July 1st and this process feels like a rollar coaster.  I have not seen the dermatolgoist since I had the biopsy done June 25th and I'm scheduled for more surgery to remove more skin July 23rd and the melanona was/is on the stomach between my breasts and belly button.

1)  Is it normal to wonder if I could have more melanoma other places on my body?  The dermatologist only removed this one mole because it did not look like the others.

2)  Would it be within my rights to ask the dermatologist to remove more moles at that time to rule out anything suspicous?

Unfortunately I will be 36.5 weeks pregnant at the time of the wide local skin removal surgery and there is concern about the dermatologist not being able to close the site afterwards because my stomach is so stretched out.  The OB is concerned about if she opens the inscision during labor or a c-section (I am not planning on a c-section).

The high risk maternal fetal medicine doctor recommends they do NOT do the wide local incision to remove the skin until after the baby is born and he wants me to be induced at 38 weeks (baby is full term at 37 weeks).  However the OB saw the site again and is comfortable with the dermatologist taking the skin out (on the stomach).

The dermatologist told me that the pathology report states that they believe that all of the melanoma came off of me when the biposy was performed.  It was .34mm thick (so pretty thin) and very slow growing.  However, protocol dictates they remove more skin around the site.

Every doctor I have spoken with has stated that there are only a handful of cases where melanoma has passed to the baby, but because they have brought this up so frequently, it has started to freak me out.

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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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