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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jennunicorn's picture
Replies 19
Last reply 10/23/2016 - 10:17pm

Hey everyone, so I got a letter from my insurance company, Blue Shield, that they are denying approval for the Ipi/Nivo combo. Their reasoning is that because I did Ipi and my "disease has worsened" that they will not re-approve the same drug. Then they have the nerve to say "Opdivo is not covered in patients that have recieved treatment with this medication (Ipi) because it works in a similar way to treat cancer"! Excuse me?! I would love to strangle the "physician advisor" that works for Blue Shield right now! Are they complete morons?

I have already emailed my oncologist's office and will follow up with a phone call tomorrow. I can't imagine this is the first time this has come up. Has anyone dealt with something similar here? It says either myself or my doctor can file a greivance if we don't agree with their decision and they'll have an answer back within 30 days... %@!$ YOU!

Sorry for the angsty post... just got back from a really nice week away with friends and this was the last thing I wanted to come home to.

Jenn -  IIIC

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Sebastian's picture
Replies 4
Last reply 10/23/2016 - 9:09am
Replies by: debwray, Sebastian, Bubbles

Can anyone tell me something about this treatment? 4 days ago I get first dose of treatment. I have 25 lumps under my skin. Few are very big. Looks like stones under my skin. For now I don't have any side effects. Can anyone had same situation? How fast this treatment working, if will be working? How lumps disappear? How the lumps are changing?
Please, let me know if You had similar story...


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SOLE's picture
Replies 3
Last reply 10/23/2016 - 9:11am
Replies by: SOLE, Janner

On the topic of residual melanoma, what conclusions can be drawn from the WLE?

My original Breslow was: 2.85mm but no clear deep margins.

On the WLE 7 weeks later: 1.47mm. The wound had obviouly healed.

Am I to understand that the two measurements are related? How so?

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I thought I'd share this article for everyone out there receiving Keytruda.

Wishing everyone a happy and healthy weekend. 



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SOLE's picture
Replies 4
Last reply 10/23/2016 - 4:32pm

In Canada, we are unfortunately behind what the FDA approves and thus I am faced with impossible choices in my view. As a reminder I am Stage 3b with "rare isolated cells" found in one node.

1) Interferon

2) CLND and access to 2 clinical trials: interferon-pembro or placebo-nivo (I think...)

3) Watch and wait

Am looking for your wisdom please.


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cestlaviemle's picture
Replies 3
Last reply 10/23/2016 - 9:06pm
Replies by: Janner, Fressia


Thank you for taking the time to read my post. 

In early June I went to a doctor for a follow up on a broken foot. While there, I asked if she would take a look at a mole on my lower back that felt like it was growing and seemed to be getting a bit irritated. She said she thought it was likely benign but because it fit all the ABCDEs and I have a family history of melanoma, she thought we should remove it. She performed a shave biopsy and it came back completely benign. I have posted the pathology report in case it's helpful at all.


CLINICAL HISTORY: Benign skin lesion/atypical nevus vs dysplastic nevus

Melanocytic Nevus, Intradermal Type (D22.5)
Note: This nevus is irritated. Nevus extends to the deep margin of the
specimen but there is no evidence of malignancy.


MICROSCOPIC: A) There are nests of typical nevus cells within the dermis.

There is focal parakeratosis.


At the beginning of October, I was establishing care with a new primary and getting a check up. She noted that I have a lot of moles on my back and then I pointed out the spot of the biopsy. Immediately she stated that it needed to come off. She could tell I was surprised and I made sure to tell her the report was completely normal. She checked my chart and agreed it sounded like nothing but reiterated if it was on her or one of her kids, she'd have it taken off with a punch biopsy this time.

I am conflicted here because the same day of that appointment, my husband was laid off and the cost of another biopsy seems like a lot right now. I'm not one to go against a doctor's recommendation, but from the little I have found on this topic it seems pretty unlikely that a) the first biopsy was wrong or b) something new that is cancerous or precancerous has grown in the scar in such a short period of time. 

I couldn't figure out how to post a picture here, so I made my profile picture a pic of the current scar tissue with new pigmentation. It sounds like it's very normal for a scar from a shave biopsy to regrow a mole, I just can't find anything on if the specific way mine is coming back looks especially concerning. 

I would so appreciate any thoughts or guidance! 





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snow white's picture
Replies 3
Last reply 10/23/2016 - 8:10pm
Replies by: CindyCo, snow white, debwray

Just checking in on you Deb, I haven't seen as much of you on here and wanted you to know I was thinking about you :)



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Jango's picture
Replies 3
Last reply 10/22/2016 - 12:52pm

Hi all, I really need your help and advice. Sorry for the long story.

I posted recently as my dad was hospitalized due to extreme fatigue and lack of appetite. They did a ct scan of his abdomen and found a mass as well as spots both in the abdomen  and a few on the outside of the lungs. They tried one biopsy and were not successful. He was admitted to a hospital that does not have any cancer care, but his doctors who specialize in internal medicine assumed that it was a reoccurrence of melanoma, because my dad had stage 1 melanoma three years ago. We were able to get an appointment with an oncologist and he saw my dad at his absolute weakest. He was weak, but he was also a bit out of it because of a residual effect of sleeping medication. He said he could not treat anybody that was so weak and that he needed a biopsy to even confirm cancer. He was a melanoma specialist but said that it was only a fifty percent chance it was melanoma and that other cancers could present in the same way. So this report was given to the other doctors , not oncologists who basically wanted to send my dad to palliative care before even giving a diagnosis !!!! I insisted that the do a biopsy and they also want to do a brain mri to see if it has spread there. They are stalling on it now, feeling it is not a priority. It is so frustrating !!! He is actually getting a bit stronger due to steroids and I think rest and proper nutrition. But he still cannot walk on his own. He is sitting up and seems to be getting stronger a bit every day. It gets so discouraging though to have the doctors  say that it is advanced cancer without a biopsy !!! If it is stage four melanoma I m hoping it can be treated like many of you have had treatment. There are a few of you that are also from Ottawa. Please any advice would be apreciated !!!

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mike.socal's picture
Replies 2
Last reply 10/22/2016 - 8:27am
Replies by: Ed Williams, BrianP

     I completed my 3rd infusion of ipi/nivo and about 2 weeks after began having hallucinations and pretty much checked out. Before that it was fatigue,minor rash, but not the more common adverse reactions. My wife took me to the hospital, after they finally told her to bring me in,which was 3 weeks after it began and progressed. I remember very little of it. I was put on Dexamethasone, after a week in the hospital I was released, and now am doing good, no symptons at all, been 2 weeks. Had scans in hospital and they showed response.  NOT SURE MY NEXT MOVE.  Anyone experience these effects?  How long can the treatment be delayed?   And if you delay, did the delay help you with previous effects?  Skip the combo and go to maintenance doses?   I'm hoping if someone has done it these ways, they can please share their experience and results, particulary longer term results.

Thanks, I really appreciate alll of you and the sharing and caring in this community,    Mike


MIke  So. Cali  stage iv

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Samroberts4's picture
Replies 3
Last reply 10/23/2016 - 2:01pm

Hi all,

I wanted to update you all on my condition since last week, when I was initially diagnosed with melanoma.  My dermatologist didn't give me a pathology report, so when I met with the surgeon and he informed me the lesion was 6 mm deep, had a mitotic rate of 10, contained wide margins, and I was in stage 2b, my mouth dropped open.  It's been the longest 10 days of my lfe, but I got the best call of my life today, informing me that my lymph nodes are clear.  The pathologist was amazed. 

I know many of you are in different stages than me, but I just want you to know that there is always hope. I have been so low for the last week by the prognostications of the doctor and the pain from all the cutting and grafting that I felt as if I couldn't go on.  I know I'm not competely out of the clear and that I'll need to maintain regular checkups every few months, but I have regained my enthusiasm for life.  No matter what stage you're in, keep fighting, because there is no feeling in the word like getting past this awful disease.  I'm going to keep coming to this board for as long as it's around and spreading that message.  There's not enough hope given from our medical professionals, and we need it on this board so that people will perservere past all the negativity that surrounds us.  Dont succumb to these thoughts because it will just drag you down.  Positive emotions play a big part in recovery, so keep your head up.

Thanks for all of your encouragement over the past week and a half, and I am so uplifted to be  part of this support group. 



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Dear friends:

The MRF is part of an exciting collaboration with a new non-profit called SHARE For Cures that was featured by the White House Cancer Moonshot Initiative. This study will help to understand use of immunotherapy drugs outside of clinical trials. We are looking for patients who are taking or have taken immunotherapy drugs (anti-PD-1 or anti-PDL-1 inhibitors), including Opdivo (nivolumab), Keytruda (pembrolizumab), and/or Tencentriq (atezolizumab).  Patients will be asked to share whatever medical and wellness data that they feel comfortable sharing with researchers. You will create a user account on the SHARE For Cures website, securely connect to the patient portals of your medical providers and health and wellness apps that you use, and select to share the data collected for research. There will also be a survey about your immunotherapy use.

To participate, please email and reference "MRFImmuno” to request an invitation code.  We encourage you to participate to help us better understand these drugs and help find more cures for melanoma patients. Your assistance in this research collaboration is very much appreciated.


Shelby - MRF

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snow white's picture
Replies 8
Last reply 10/22/2016 - 11:38am

HE IS WALKING WITH A WALKER!!!!  woot woot!!!!  They said he is progressing fast and may get to come home the middle of next week, which would mean he can start his treatment as soon as he gets out!  He is moving around really good, still weak, but everything is coming back.  I am so stoked!!!

Thank you everyone for your support, i appreciate it so much!!!!!!



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Anonymous's picture
Replies 9
Last reply 10/21/2016 - 10:26am

I am really in a bad way today and don't feel that I can come here- to a community of people who have the same cancer as I do- because I have been reading all of the posts (every day) as a way of trying to learn about melanoma and be supported, yet I have seem too much judgement and  chastising to feel comfortable  sharing.

Please those of you who have all the answers, be patient and kind to those of us who don't and who are just seeking a shoulder to lean on.

There aren't many places we can go.


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Anonymous's picture
Replies 3
Last reply 10/21/2016 - 10:47am

My elderly father was diagnosed with Stage IIB melanoma last October which was treated with a wide excision and removal of 4 lymph nodes around his arm/underarm.  We were told by the surgeon that no trace of the cancer was found in any node or the margins and we were thrilled and no further treatment was ordered.

Unfortunately, fast forward a year later and it appears that he now has several mets to his lung (confirmed via biopsy last week) and, I suspect due to very recent vision changes, mets to his brain.  He is having an MRI of his brain today.  We'll be meeting with his oncologist for the first time on Monday. 

First, I can't believe how quickly this is happening.  Secondly, he is being treated at Memorial Sloan Cancer Center in NYC.  We loved his surgeon, but I'm a little disappointed that he was not assigned to Dr. Wolchok as, at least in my non-medical opinion, he seems to have a very advanced case.  We were told, however, that they wanted us to get the first available appointment, so I guess beggars can't be choosers. 

I'm reaching out partly for some moral support and partly because so many of you have been down this road and know a lot more than I do. 1) What kinds of questions should be asking his onc?  2) what are the possible treatment options? 3) We don't know his BRAF or other gene status yet, but is there a chance that a treatment could buy us some time? 4) Do you think we should waste time getting a second opinion or just go with whatever treatment is recommended by MSKCC.


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