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.

Expand/ Collapse Topic
Replies By
View Topic
jennunicorn's picture
Replies 32
Last reply 10/24/2016 - 6:25pm

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

Login or register to post replies.

Anonymous's picture
Replies 16
Last reply 10/24/2016 - 3:41pm
Replies by: Alce123, Anonymous, cancersnewnormal, stotesbery

I was wondering if any Melanoma Warriors have progressed from stage 1b melanoma dx to having liver mets.  Only indication was high ALT reading on blood test, some mild stomach fullness.   I would like to hear other's expierences.  You go from being advised that 1b, be mindful but don't dwell on it, your cured to WTF liver mets.   



Login or register to post replies.

mike.socal's picture
Replies 3
Last reply 10/24/2016 - 9:47am
Replies by: Hukill, 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

Login or register to post replies.

Sebastian's picture
Replies 5
Last reply 10/24/2016 - 9:42am

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...


Login or register to post replies.

WithinMySkin's picture
Replies 29
Last reply 10/24/2016 - 9:30am

Hello fellow fighters! I just got some great news that I wanted to share. Recent PET scan came back clear! I’m suddenly NED! Holy crappola I can’t even believe it. My second (and last) infusion of Ipi/Nivo was waaaay back on May 6th which started the cascade of side effects, steroids, weening, more side effects, and finally that wonderful 3 letter word.

Was the journey worth it?! Absolutely. I’m still dealing with some lymphedema in my leg from the CLND and some lingering endocrine/girlie issues but every day is a blessing. Every day I get to wake up and be grateful for the day ahead. Another day to enjoy the people I love. Another day to make a difference in other people’s lives. Another day to enjoy the life I’ve lived. Another day to dream about tomorrow.

I know everyone on this board has tough days and sometimes it's hard to see the good through all the bad. But there is always tomorrow, and we never know what tomorrow will bring! It may seem miniscule, but tomorrow is the first step in your future. Dream big!! So to help me celebrate my new status (woohoo!) and help your heart smile a little, I want everyone to list what another day means to you. What do you want tomorrow to bring?

OK so I'll start. Tomorrow is another day to...enjoy a glass of wine and a bubble bath. At the same time :)




Login or register to post replies.

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 :)



Login or register to post replies.

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. 



Login or register to post replies.

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?

Login or register to post replies.


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

Wishing everyone a happy and healthy weekend. 



Login or register to post replies.

Casitas1's picture
Replies 9
Last reply 10/22/2016 - 2:09pm

My Dr.(Rock Star Doc) and myself decided to stop Keytruda treatments today. I have been on since Jan. 2016. and have been NED. since July. We will have close follow ups and scans in Jan. I know there are some NED folks that are wondering when to say when in ending treatments. Well,I just jumped ship  and will keep you all posted on my journey post treatment! 

Best, Paul

Login or register to post replies.

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 !!!

Login or register to post replies.

dmturner's picture
Replies 5
Last reply 10/22/2016 - 12:15pm
Replies by: dmturner, Treadlightly, Anonymous

I went to my doctor that did the Mohs procedure for my original melanoma on Thursday.  Finaly, since 4/10/16 it is pretty much healed.  In the well lit room I was able to see a couple spots close to the original site that had me concern before the doc came in.  I pointed them out, he said they are not dark like melanomas but he did a biospy.  Got the call today.  POSITIVE FOR MELANOMA.  What?????  I thought we had clean margins?!?!  What about the Yervoy?!?  He said these might be satellite cells.  So they want to do another Mohs procedure in the morning.  Wait.  What?!  So I called my ocologist, spoke with the nurse, she said "get it out".  My aunt who is nurse MD and specializes in skin cancer said to call my surgical oncologist.  I did.  The nurse calls back she said "Do not do the Mohs procedure."  "It is fine for the first time".  But for additional areas close to the original site not so much.  So going to see oncologist on Wednesday anyways for my last Yervoy.  Maybe, maybe not going to have the infusion.

Anyone else have this??


Login or register to post replies.

Ginger8888's picture
Replies 24
Last reply 10/22/2016 - 8:00am

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

Login or register to post replies.

Jenine's picture
Replies 1
Last reply 10/21/2016 - 4:05pm
Replies by: WithinMySkin


My husband is participating in a clinical trial which includes Keytruda and PEG interferon.  Does anybody have experience with this drug combination?    My husband will bear anything to survive however, I feel it necessary to question interferons effectiveness.  My husband has been sweating profusely since starting the interferon treatment. Is this a normal side effect?  Should we consider omitting or reducing the amount of PEG?

Does anybody have any experience similar or possible information to be shared?  Any input related to PEG interferon and Keytruda combination would be helpful.  

Thanks for the support,


Login or register to post replies.

Aubreesmommy41's picture
Replies 9
Last reply 10/21/2016 - 3:29pm

My 8 month old got a mole on her knee at about 5 months old.. it's the only one she has but I don't know if I'm being paranoid or not because it scares me.. I was diagnosed with a stage 1a when she was 2 months old.. a mole on the backside of my left arm.. pet scan clear.. long story.. could someone look at this mole on my profile pic and let me know if it's suspicious.. it almost looks like a freckle but it's a tiny bit raised.. thanks Traci 

Login or register to post replies.