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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_Paul_'s picture
Replies 2
Last reply 9/21/2015 - 11:57pm
Replies by: _Paul_, Bubbles

I thought I would take a minute to share my experience with this new drug.

I have been experiencing greater and greater fatigue the more Keytruda treatments I take. It got to the point that I needed to take 6 weeks off work. My oncologist suggested a Keytruda holiday, which did result in my fatigue resolving, but after the subsequent treatment it returned.

A friend suggested I try Provigil, a newer drug originally prescribed for those suffering from narcolepsy and other sleep related disorders. It is gaining popularity for off label uses, including ADD.

Anyway, I have been on it for the last several days and it has brought me back to feeling normal. It is a huge relief. I do urge anyone considering taking it though to consider the fact there are no long term studies available yet. So there is some risk for sure. For me, with all the other uncertainty one faces at stage 4, it is worth it for the quality of life.

I hope this post is useful to others suffering from fatigue.

- Paul

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Remi's picture
Replies 8
Last reply 9/21/2015 - 4:47am
Replies by: stars, Momofjake, ET-SF, Anonymous, Remi

I was diagnosed just over a year ago with 0.4mm VGP no miotic rate which was all removed and I had a year of quarterly check ups. I was discharged in June and haven't given it much thought since until this weekend as I have a red spot growing in the middle of my scar and can feel it as a tiny raised bit. Can you gets spots on a scar? Should I be concerned our would it be black if it was recurrence of melanoma?

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my son jake, 18, had his scans yesterday. He has been on keytruda for 3 months now. He looks amazing! All visible tumors are gone. He has a heavy tumor load w 20 in his liver and also lungs. Plus many in his spine, ribs, femurs, muscles etc. the new scan showed many bone mets gone. His spine only had 2 left. His ribs are almost clean, femurs too. His lungs and liver have stable mets with less activity. He did get one new tumor in his chest. 

My question is, does this mean Jake has years to live now? I mean he has no side effects to speak of. He plays tennis everyday and is a very healthy kid--other than stage 4 Mel!! 

Anyway, Jake is truly my miracle. I hear in my mind daily, "I answered your prayers". No matter what happens from here I feel so grateful! Jake is back to his life! 18 is a great time to live. 


kerri-mom of Jake

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Anonymous's picture
Replies 7
Last reply 9/24/2015 - 10:52pm
Replies by: geriakt, Anonymous, clthomas2131, kylez, ronald duclos, mrsaxde

Hi there - I am new to the site.  I am starting the Ipy versus Nivo trial soon and was wondering if anyone has been in it / is in it now / is signing up for it?  It is the blind trial so you don't know which treatment you are getting.  I am curious about the dire sounding side effects and what experience anyone has had dealing with them.  I have been told they are auto-immune related - colitis, hypothyroidism, pituitary issues, etc.  Thanks so much for any thoughts.  

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Dear Patient Community:

I wanted to let you know about  a unique and exciting opportunity with our partner, The Cancer Support Community:

  • Have you or a loved one been affected by melanoma?
  • Would you like to learn more about the risk of melanoma recurrence and have tools to navigate post-treatment survivorship?
  • Would you like to share your experience to help others?
  • Would you like to learn how to become more of an advocate in your own community?

The Cancer Support Community is hosting a two-day inaugural Patient Advocate Summit for people who are at high risk of melanoma recurrence and their caregivers. The Summit will take place in October in Philadelphia, Pennsylvania.  They are seeking approximately 20 volunteers from across the U.S. to participate. The Cancer Support Community will cover volunteer travel, meals and lodging to and from the Summit. If you are interested in participating, please complete the volunteer application at:

If you have any questions, please contact the Cancer Support Community at or call 202-650-5369. This program is in partnership with AIM at Melanoma, Melanoma International Foundation, the Melanoma Research Alliance and Melanoma Research Foundation.

The program is sponsored by Bristol-Myers Squibb. 


Shelby - MRF


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pookerpb's picture
Replies 10
Last reply 9/21/2015 - 10:45am

I see so many of you go great distances in hopes of being part of new trial, or seeing a specific Melanoma Specialist. My husband was just kicked out of his most recent trial, and although he can continue to have his Keytruda portion of it fairlyl close to us, I would like to look at other options since its obvious it is not working fast enough to keep his stage IV stable.

We have been traviling back and forth about 3 hrs for the last few years which seems like so far initially. After hundreds of trips it does get shorter as it seems. I know that there were several individuals who flew in to where we going from Chicago, NY, all over. With two young teens at home, the 3 hour drive for us one way, was exhausting enough and come home and do the day to day stuff that needs done.

I am curious how some of you travel and afford to travel to different places for consults and such? Once you are established in your trial, do you fly there for each and every treatment, scan etc?

I guess I am not willing to accept that continuing Keytruda when it isnt working for my husband. But I dont know how to proceed. I know my husband does not want to take the time away from family, traveling all over and God knows we dont have the money.

Can anyone give me any suggestions on maybe a way to make it feasible to do, or how you do it?  Especially for those still working?



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Hi all,

Since the MRF’s website redesign in late 2013, we have continued to explore ways to make and MPIP more efficient and user-friendly for the online melanoma community. We appreciate the feedback many of you have provided over the years!

Because the “Off-Topic Forum” receives very little traffic and there continues to be a very active and engaged community on the 'regular' MPIP forum, we will be removing the Off-Topic Forum from the website by October 16, 2015. As part of this change, we will redirect people to the MPIP community. We believe the few individuals who have posted melanoma-related questions in the Off-Topic Forum will appreciate being redirected to MPIP and will receive better support and information.

Let us know if you have any questions!

Shelby - MRF

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JennerFromIowa's picture
Replies 8
Last reply 9/18/2015 - 9:34pm

Hi everyone.  I haven't been on here for quite some time.  Hope all of you are doing alright and beating the beast.  I've been having some back pain radiating into hip and down my leg.  I have spinal stenosis so that is probably the culprit.  Had an MRI of my hip and all looked fine.  It did show a prominent inguinal lymph node that was borderline in size.  I wouldn't normally think too much about it but this is the hip where I had my WLE and the node basin where I had my Sentinel lymph node dissection and biopsies.  All were clear at that time.  Anyone have a prominent borderline lymph node?  Could use some adviice as to where to go from here.  I don't see my oncologist anymore.  They released me saying it wouldn't come back. We all know they can't determine that.  I was stage IIA with a high mitotic rate 13 years ago.  Thank you so much for any input!

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Anonymous's picture
Replies 8
Last reply 9/21/2015 - 8:51pm
Replies by: Anonymous, ET-SF, Never Gonna Stop, casagrayson

It's two days after being told my biopsy was cancerous, and I'm very worried.  I've been reading up on things as I can.  I have an appointment with a surgeon in 1.5 weeks for sentinel node removal and analysis.

I visited my GP today who had the pathalogy report.  The things I remember from the doctor are:

* superficial spreading

* Clark level IV (this is the part that scares me)

* non-ulcerated

* I saw the number .85mm but don't know in what context (the width was around 5 mm)

* mitosis of 1 / mm^2

Are there any words of encouragement or analysis of the data that I do know so far?  Or is it too early?


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mrsaxde's picture
Replies 16
Last reply 12/2/2015 - 12:28am

I saw my oncologist, Dr. Melnyk, this morning. She went over the finding from the CT scan I had done on Tuesday. I couldn't have asked for much better results.

I've had three cycles of Keytruda. We noticed some changes for the better in some spots on my skin after just the first infusion. The CT scan confirms that things are moving in the right direction. Here are the most important parts of the radiologist's report:

"Previous studies have shown several nodules in the right lung. The largest of these is in the right lower lobe. This nodule was not demonstrated on a chest CT dated 1/6/2014. On a PET/CT dated 2/20/2015 the nodule measured 7.9 mm. In May this nodule mesaured 7.1 x 4.8 mm. It has now further shown a mild decrease in size, now measuring 5.9 x 3.5 mm. Other nodules in the right lung described on the previous examination in May are again seen on images 89 and 110. These also appear slightly smaller than on the previous study. There are no other lung nodules.

1. 3 subcentimeter nodules in the right lung described on studies from earlier this year appear to be slowly decreasing in size.

2. There has been a significant decrease in size of a previously described hypermetabolic cutaneous nodule involving the left chest wall posteriorly."

This is turning out to be a very good day. :-)


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arthurjedi007's picture
Replies 22
Last reply 9/22/2015 - 9:41pm

I'm kind of upset. Maybe it's the fevers and tumor pains from not having pd1 in so long. I dunno. I wanted to share my md Anderson experience and see maybe this is normal for them and I'm just silly for expecting more. I dunno.

On the 4th I finally made it to md Anderson. I was excited to finally be in the number one cancer place. Kind of neat how their sign marks through cancer.

Went to the melanoma waiting area. Was only a couple patients there. Did the typical fill out forms and wait 20 minutes or so.

Got called back and did the typical registration. Then went back down and way over and did the typical blood draw.

Then back up to the melanoma waiting area. Got called back for the typical vitals and small room. The first nurse was the typical optional trials for tumor and blood bank research.

Second nurse came in and asked some questions about my history.

The doc's head nurse comes in and asks questions and does a physical exam. She says if my kidney tumors are a different cancer they cannot treat me. She also said she will not bother having the trial nurse see me. So when she leaves I'm in tears wondering why I came here. She also gave me a card with the only number to call is the melanoma number which I already had.

Then the doc comes in. The first thing he says is he wants to do multiple biopsies and genetic testing to try and figure out why the medicines haven't worked for me. He also said pd1 and things only work when the person already has the cells in them that can beat the cancer. He also talked about what I think is some type of til and some other things. He wants scans right away. The biopsies right away. And to start the keytruda il10 trial asap. So I'm thinking finally I'm impressed and everything is going to be great.

So the trial nurse talked to me and said due to the holiday she couldn't get the trial started on the 10th but she will shoot for the 17th. She gave me a card how to call her. Also the doc came back and said he would like me to do the optional biopsy part of the trial so he can do more testing and studying of my tumors so I did that.

On the 5th they did a ct and head MRI. Except they didn't do the MRI contrast since that almost killed me at NIH.

The 6th to 8th I was too sick with fevers and feeling awful so couldn't go home. Called the trial nurse on 8th and she said there was lots to get done to make the 17th happen.

On 9th the business financial lady called saying it would be 7 to 10 business days for approval and they just submitted it. She said nothing could happen until then. I start to say not even the doc's biopsies but she didn't let me finish and said nothing can happen. So I'm in tears again.

On 10th I left a message with trial nurse we are going home. I could not get rest in the hotel and only got 2 hours sleep plus the fevers so my parents were getting worried. Trial nurse says she'll keep trying for the 17th. Suddenly someone calls about the biopsy so scheduled that for 21st.

Back home with fevers and feeling crummy. Plus lots of pain from tumors since I'm overdue for my pd1. On 14th trial nurse ok getting my xgeva at home but if I get pd1 might push start date. So opt not to get pd1. Only thing holding up trial is financials so she gives me their number and wants me to call her if I hear it is approved. I call them and still not approved. She also said she would push the start date to the 24th.

On 16th I call financials a couple times and it gets approved. I leave message with trial nurse financials are approved. She calls back and says the treatment area is overbooked on the 24th. They have 58 patients that day. Also for some reason they aren't letting her schedule it for the 25th although they aren't overbooked that day. I say something to the affect that's odd. This is md Anderson. The number one cancer place in America. She didn't know quite what to say.

Soooo. That's my experience with md Anderson so far. I really hope things get better. If not I'm not going to make it much longer like this. Too many tumors and pain and fevers and keep losing weight. I'm sorry I sound depressed. I know others are going through more than me.


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Millykamp's picture
Replies 5
Last reply 9/17/2015 - 6:53pm


home resting after my WLE and SLN surgery...    They only remove one sentinel lymph node...  So is that a good sign? 


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michaelinsocal's picture
Replies 3
Last reply 9/18/2015 - 3:43pm

Dx Nov 2013 stage 3A

Second annual scan results in..... I'm happy to report NED. I am blessed. 

The one thing I wasn't happy about is that the doctor only ordered a CT of my pelvic and chest. I wanted a full body, especially the head. I'm sure my DR is following guidelines but those are often influenced by Insurance companies. The thinking behind the decision to scan only the pelvic/chest is since my primary was on my outer left foot, if there was progression it would appear first somewhere chest down. That's not always the case as I've read.

For now, I'm going to count my lucky stars. I will follow up with Dr Michael Wong at USC for a full review of treatment and scans so far.

Keep the faith!


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Debbieamccoy's picture
Replies 13
Last reply 9/21/2015 - 10:24pm

4 weeks ago all my scans were clear to day a MRI showed probable mets to liver after first dose of yervoy 3,weeks ago I am so upset and discouraged any and all advice 

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Christine.P's picture
Replies 17
Last reply 9/21/2015 - 10:04am

I am currently said to be a stage 3b melanoma patient and will be having scans next week to determine if there has been any spread to distant nodes or other organs. My surgeon feels optimistic that it hasn't spread past the one (rather large) sentinal lymph node that he removed two weeks ago.

He also seems to be sort of half-heartedly recommending Interferon if I am indeed staged at 3b. It's as if he knows the statistical benefit isn't that great, but has no other options at this stage. I will know more at my next appointment next week. 

My question is this: Are the side effects of Interferon worth it to see only a 3% improved chance of longer-term survival? I am researching some articles and leaning toward not doing the Interferon at this time, but also don't want to be too hasty in deciding. 

Does anyone have information or personal experience that can help me make this decision? I want to fight this insidious disease, but also don't want to live with flu-like side effects - and worse - if the benefits are negligible. 

Thank you in advance for your input.

Christine P. 

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