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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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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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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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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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

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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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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??


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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..

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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,


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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 

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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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slh4448's picture
Replies 6
Last reply 10/21/2016 - 1:40pm

Hey all,

I know that many of you have read my posts about what is going on with me with side effects that I have been experiencing with ipi. To recap, I have had the first two infusions with the last one being on September 20th. For the better part of three + weeks after I experienced a lot of nausea and diarrhea.

Since September 30th, I have been on Prednisone 80mg daily, 30mg daily of a ppi. Last week I was in the hospital for two days getting a ct scan and blood work and both came back clear. I had a colonoscopy and it was determined that I have acute moderate colitis, more than likely due to ipi. For the last 10 days I have been taking Budesonide twice daily for the colitis and 10mg of Potassium because those levels were low.

After my release from the hospital I met with my doctor and he is recommending for me to not go further with anymore ipi treatments. Take a watch and see plan of action since I'm stage 3a.

I'm feeling much better, no nausea and no diarrhea and have a pretty good appetite.

So I have a follow up appointment with my doctor tomorrow, will do labs again and discuss everything.

So my thoughts are to discuss with my doctor about having my 3rd infusion maybe by the end of October, beginning of November while I'm still taking the Budesonide and the other meds that I am taking more from a proactive role instead of waiting reactively to any further side effects. I feel like I'm playing with fire with my case of colitis already, but I think that I would like to get through the loading doses. If all went well after the 3rd, have the 4th infusion around mid-December, then get a scan before the end of the year since my deductible will have been met.

I wonder what my dotor will say about my plan???? Any thoughts out there from you on my "possible" plan???




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Buddy0513's picture
Replies 2
Last reply 10/21/2016 - 12:59pm
Replies by: BrianP, snow white

Hello everyone!

It's been a while since I've updated since things have been very hectic with mom.

We started out about 4 weeks ago with carbo/taxol for chemo. A few days after the first infusion her stomach had gone down in size greater than 50%. We saw the doctor and she had lost 8 lbs in one week. The Dr and nurses couldn't believe her response. She has had 3 more infusions of the chemo after that, but only lost 2 lbs since and has been holding steady at her current weight. Her stomach basically isn't hard bloated anymore and is her typical size prior to all of this. She's able to go to the bathroom normally (which Dr originally told us we didn't have time to wait without chemo, the bowel blockage would kill her...) and she can finally lay down in a bed and function by herself. I really don't believe the results myself....

During this time she had her 2nd infusion of ipi/nivo. She really had no side effects of it until this time. 3 days after the ipi/nivo, she became very ill (flu like basically), major joint pains and this redness began to develop. It started small on her neck, a few hours later it was on her leg, the next morning she woke me up in a panic. Her entire body from her neck to her toes was complete red rash. She wasn't really itchy, but was severe red. We called the hospital who told us to come in right away. Having panic attacks and in tears we drove to the hospital. They drew more blood work and we waited.

When our Dr walked in, he took one look at her and said I know this looks bad and you probably think it is...but this is the best thing I could have asked for. Mom and I just sat there. Confused. We didn't understand how a major sunburn skin look was a good thing. The nurse then came in and was all excited as well. She said this is the best news we could have asked for especially since mom showed no other side effects (other than losing hair from chemo...)...

She is currently on steroids to control the rash (Dr said it would go down after first dose...he was right it's basically gone). I'm not entirely sure I understand what's going on...Dr explained her immune system is doing its job and it's basically angry to the point it's attacking on surface now. So I guess we just wait and see. We will be going back first thing next week to see him (he requested we see him Monday which is unusual so we are a bit nervous).

Other than that...Nothing else new to report. Really praying that we get some good news here. I keep seeing stories of people posting how they are responding both to her treatment and keytruda, especially a lot of positive stories lately! Just hoping mom is heading down that path as well.

Thanks for reading! Just wanted to give a quick update :)

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Anonymous's picture
Replies 14
Last reply 10/21/2016 - 12:58pm

Has anyone else done this?  My doc says it is way more dangerous than interferon and I shouldn't do it. But then another says it is better than interferon.  Why is it 3mg for stage 4?

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JoshF's picture
Replies 12
Last reply 10/21/2016 - 11:37am

I know I haven't been on much lately but I always think about everyone. Been wondering if anyone has heard from Jaime or Lee. Think I'll send Jaimie an email and I believe Lee was looking at trial with Duke. I hope they're well.


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

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