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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Anonymous's picture
Replies 3
Last reply 10/6/2016 - 11:39am
Replies by: Anonymous, jennunicorn, snow white

I have a suspicious mole on my arm. My doctor says that because it is under 6 mm that he will not biopsy. Not even for peace of mind. It has 2 shades of brown, irregular boarder and from what me and my husband can see, it looks as though it is spreading some pigment. I live in Canada and if I want to see a skin specialist, I need to get a referral from my primary doctor and he says that he will not send me to a dermatologist or to get a second opinion. Has anyone in Canada been in a situation similar to this? Would a clinic or ER biopsy a mole?

I don't know what else to do. I have expressed my concerns to my doctor but he says that he would only biopsy if it were over 6 mm and that a mole so small wouldn't be considered "cancerous." Doing research, I read that Melanoma CAN be found when it is under 6 mm. 

Any information on how I should proceed would be greatly appreciated.

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Gene_S's picture
Replies 2
Last reply 10/6/2016 - 11:26am
Replies by: Anonymous

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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KAF's picture
Replies 10
Last reply 10/6/2016 - 9:49am

Hi all

I developed hypophysitis 1 week after my 3rd dose of ipi/nivo in mid July.  I've been on steroids, was weaned down when pituitary became inflamed again.  I went back on hi-dose steroids (100mg) a couple of weeks ago and now I'm down to 40mg.  I'm hoping to continue lowering that number but monday night (3am tuesday) I woke with what felt like flu- 103.2 fever and horrible chills.  I took advil and I felt fine the rest of the day except for fluctuating between chills & sweats during the day. The fever didn't come back during the day.  I have no sore throat, cold, or any other symptom that would make it seem like a flu.  Yesterday morning I woke up at 4am with a fever of 103.4 and chills again. I took advil, felt fine the rest of the day and the fever went away.  This morning about 2am my fever came back - 101.2 - and the chills weren't so bad but the muscle aches were painful.  The advil took the fever down and got rid of the muscle aches but my hands are tingly today and my vision is horrible today and I can barely read what I'm typing.

I called my doc and spoke with the nurse.  She thinks these are all side affects from the ipi since i've only been off it since mid july and she said this can happen after the treament is done.  I would have just thought that the hi dose steroid i'm on would have stopped the drug from all these side affect.  Does that mean the drug is still working in my system even while on the steroids?



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AshleyS's picture
Replies 2
Last reply 10/6/2016 - 8:55am
Replies by: debwray, Anonymous

Ugh. I've tried posting multiple times so I'm going to keep this short. 

My 4-year-old daughter has a mole that I've been watching for awhile. Honestly, I've been worried about it but with my history (stage IV, currently NED) I get paranoid with my kids' skin. Today I noticed it is scabbed. Of course she doesn't remember scratching it. 


We live in rural North Dakota. I doctor at MD Anderson for oncology but see my dermatologist in ND because I feel like she's more thorough than anyone I saw at MDA. Should I push for it to be removed (it's on her left temple)? Should I trust my local docs or go somewhere bigger? If we stay in ND, should I ask for the biopsy to be sent to Texas?

Im jumping the gun because my doc's office was closed but I'd appreciate thoughts. 




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Rita and Charles's picture
Replies 4
Last reply 10/6/2016 - 7:51am
Replies by: Bubbles, Fen, Patrisa, Casitas1

So we have had our summer bubble, travel, family, lazy.................4 months off meds, first scan since July.  July PET showed lung tumor and lymph nodes almost no activity - Yay!  BRAF combo - whatever side effects Charles suffered were worth it - it kicked Mel in the butt. The side effects at the end became too much, we chose to live a summer of life, take another trip in November.  And yet now here we are - breathing the "scan day" air which always seems thinner, nerves more rattled...........wish us luck.  Results on Thursday with Onc.............we pray PET has no lights to show!



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Jenine's picture
Replies 5
Last reply 10/6/2016 - 7:10am
Replies by: Bubbles, Jenine, debwray

Hello All,

Has anyone participated in case study 13-105?  My husband is considering this as an option for treatment. From what I understand it has been in trail phase for 2 years but feedback is limited.  Thanks.

Wishing everyone strength and good health♥️ 


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snow white's picture
Replies 3
Last reply 10/5/2016 - 7:03pm

Just found out that Dad is BRAF Negative :(


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Daisy27's picture
Replies 2
Last reply 10/5/2016 - 5:31pm
Replies by: Daisy27, jyc

My husband has now had four different cancers...bladder, colorectal, vocal chord and now mucosal melanoma.  He is getting Keytruda infusions every three weeks and is waiting to be acceptes for a clinical trial where they will inject directly into the spot on his neck.  Would love to hear from thers with th same unusual melanoma and how it has been treated.

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Replies by: Hukill, debwray, Anonymous

We live in Miami Florida. This week my father who is diabete and 74 yrs old received the following results from his dermatologist.  Any advice and recommendations the first appointment with the oncologist is this monday. I am going with him and I want to be prepare as much as possibe.

Thank you for any information and help you can provide. 

Skin Biopsy, Mid Upper Forehead -
Malignant Melanoma, Clark's level at least IV
Breslow thickness at least 2.8 mm
Ulceration - present
mitoses -<1mm 2 square
panthologic stage - pt3b
Note: the lesion extends to peripheral and deep histologic margins. Pan melanocytic cocktail Mart-1 and tyrosinase) is performed. 

How bad is this?
What is the best possible treatment for this?

Thank you
from his son 

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Anonymous's picture
Replies 3
Last reply 10/5/2016 - 3:01pm
Replies by: Treadlightly, Anonymous, debwray

Hi everyone,

I'm brand new to posting but have been lurking for a couple of months. I have a LOT of moles so have been monitoring them fairly closely for a number of years and have been on a 6-month skin check schedule with my derm for the last 3 or 4 years. I have had several moles removed in the last 10 years that were in various stages of dysplasia. I had a mole removed from my upper back in May of this year that came back melanoma in situ. In a lot of ways I was not shocked because my father died of cancer (not melanoma) and my mom died from a retinal melanoma that metastesized to her liver and other organs so I certainly had the family history. The mel was removed and then I noticed a dark mole on my left cheek that was not very big but that I had not noticed in previous months and it looked really strange (in a bad way) so just had it biopsied earlier this month and it also came back as MIS and will get it excised in a couple of weeks. I had just kind of come to terms with the first MIS and was really taken aback with this second one because I didn't expect to have another mel in such a short time period. I have felt anxious, depressed, sad, but grateful and know I am very, very lucky to have caught both of these in the early stages. But it has really rocked my world and left me depressed and not knowing what the future holds for me. I look at all the moles I have and think they ALL look questionable at this point as I am super-scrutinizing everything. I know that is unreasonable and I think it is just a stage that I need to get through. I have an appointment with my derm next week just to sit down and discuss my situation to answer my questions and see if there is anything else I could be doing (other than the obvious and important things of staying out of the sun, wearing sunscreen and long sleeves, etc.)

I guess I just wanted to "unload" all my feelings on the boards and most of all wanted to say thanks to everyone for posting all the great information and stories about what they are going through. I am trying foremost to educate myself about mel and be super vigilant on my monthly skin checks. I had my husband take a lot of photos of my body so I can compare against them every month. I have a lot of moles on my back, which are a lot more difficult for me to monitor and I get very anxious about those especially having this 2nd mel. Thanks for letting me tell my story and to vent my feelings and emotions and thanks for all the communal support each and every one of you provide! I have found it so helpful.


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Anonymous's picture
Replies 1
Last reply 10/5/2016 - 2:48pm
Replies by: debwray

This trial aims to test safety and effectiveness of the combined treatment with pembrolizumab (Keytruda) andvemurafenib (Zelboraf) in patients with stage 3 or 4 melanoma. The main outcome to be measured will be the response of the tumors to the treatment. This trial is recruiting in Pittsburgh, Pennsylvania (US)



Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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snow white's picture
Replies 4
Last reply 10/5/2016 - 2:16pm

My Dad (and Mom) met with Dr. Christopher Dumas and Dr. Amanda Shroyer today at Hoag.  Dr Dumas is a brain surgeon and specializes in the Gamma Knife.  Dr Shroyer is a specialist with the Cyber Knife.

My Dad called me (unfortuanely I am away on a Business trip that he was supposed to take) this afternoon and sounded very good on the phone, he said he felt very confident in the Doctors and felt that they answered any and all of his and moms questions.  Dad was worried that he had to many mets (8+) to do it, but the doctor reassured him that he has done 20+ before and not to worry.  Dr. Dumas inquired where else Dad has mets and Dad told him that he has them in the Spleen, lower abdomen and upper thigh.  Dr. Dumas said that they could use the Cyber Knife on those, but that the most important right now is the Brain.  They will do the procedure on Thursday with a High Def MRI just before.  I told Dad not to be surprised if they do the MRI and they see more than they origanally told him that he had.  So he is prepared for that.  

We still havent heard back from Dr, Margolin at City of Hope to see what treatment he will do afterward, she is on Vacation until the 13th.  

So praying all goes well on Thursday!!


PS. Still absolutely no symptoms, he said "I feel just fine, just like I did before" LOL.  I said well that's a good thing :)


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Anonymous's picture
Replies 2
Last reply 10/5/2016 - 12:59pm
Replies by: Polymath, Bubbles
Daisyduke's picture
Replies 12
Last reply 10/5/2016 - 12:35pm



I just got back from my appointment and what t thought was a Stage III B prognosis turns out is Stage IV and the Doctor wants me to start either Keytruda or Opdivo,  Which one do most people use and how bad are the side effects?


What have you found to be the success rate when you go back for further scans?  The Doctor seems to feel that this is the best option for me and probably the only choice for right now.  I guess once you are on this drug it is for life is what I have heard.


What is the best and easiest way to get these drugs administered that you have found, going in through an IV in you arm, a PICC line or a PORT?  I am still trying to cope with this new information so I can move on and make the right choice.


I know that with this support group out there I will be able to cope and make it.


Thanks everyone.

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