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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Tracyd715's picture
Replies 8
Last reply 10/3/2015 - 2:12pm

Has anyone had Gamma Knife treatment for a brain lesion? My husband is scheduled to have this done next Friday and was looking for some input on what to expect and how your results were.

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Anonymous's picture
Replies 6
Last reply 10/3/2015 - 2:07pm
Replies by: kylez, DZnDef, scmcelroy, Anonymous, stars

I have melanoma insitu on my nostril.  Everything I read and the couple of doctors i have seen want to do MOHS surgery which has the potential to take off half my nose if not more depending on whether they get clear margins. The unknown of not knowing where the stopping point is is terrifying me.  Maybe to the point I'm willing to not do anything.  Since it is insitu it may take a long time to spread if it and when it does spread - right??  I've heard a little about this Imiquimod cream.  Does anyone know anything about it?  I've heard that it is sometimes used when the potential for disfigurement is a possibility.  It just seems like i'm hearing so many cases of having it and then having surgery and then having it reappear somewhere else.  An endless cycle.  How many people out there are walking around clueless that they may have this and live a fairly long fulfilling life without the constant fear that now invades me.  I think sometimes we are our worst enemies by trying to always be one step ahead of our health.  Don't get me wrong, i have always been proactive in my health care.  But i am just having a heard time believing that by cutting off half my face that my life is going to be so much better.  Depression will surely set in and succomb a portion of my time before i get back on my feet and rise above it.  When talking to people i feel like i am the only one who feels this way.  You say the word cancer and everyones life immediately changes because they choose to try to defeat it.  Quality of life is more important than quantity in my opinion.  People suffer through chemo and all of these treatments that are out for what?? I few extra years on their life.  I've always heard once you cut on someone for cancer it has a greater chance of spreading and there are cases where i honestly believe this.  One minute i am ready for surgery the next no way.  I don't know how to be at peace with either answer.  Anyhow, thanks for listening and GOD be with all of you.


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Christine.P's picture
Replies 3
Last reply 10/3/2015 - 12:22pm
Replies by: _Paul_, Swanee, CarolA

My recent history: two primary melanomas - a large one that required a skin graft on my right calf with no spread to sentinal lymph nodes and a small one on my left arm near the elbow that had spread to sentinal lymph nodes. Had full axillary dissection of 20 nodes; only one was positive for cancer,  but it was large (a little over 6 cm). 

I just got my the results of my MRI and CT scan and, thankfully, there is currently no spread to brain, lungs, or liver. Unfortunately, though, the CT scan revealed two masses/lumps  - one in my left breast and one between my breasts just above my diaphragm (and in front of the breast bone). Mammogram and biopsies are pending. 

My question is whether anyone out there has experienced this kind of spread. I know both could just be cysts but I also know they could both be melanoma - or even a different kind of breast cancer. 

I'm not sure how this will affect my final staging and I know I can't know until the tests are back, but I can't help but be a little worried and I wanted to reach out to this kind and well-informed community. 

Thank you!

Christine P. 

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mrsaxde's picture
Replies 10
Last reply 10/2/2015 - 7:37pm

OK, I have a question for everybody.

I had my 4th cycle of Keytruda today, and the nurse told me that my veins are no good. Never had anybody say that before today. I only have one arm for them to use, because of the lymph node dissection from my other arm. She recommended that I contact my surgeon about getting a port.

So here's my question. Who else here is getting Keytruda, or another long term IV therapy who has a port? What are your experiences with it, and what is your opinion of it? My wife, who is an RN, says that since my treatment plan says I'll get Keytruda "until progression," a port makes a lot of sense. It does to me, too. But I don't know anybody who has or has ever had one. So if you have one, or you have had one, tell me anything you think I should know.


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mizmena's picture
Replies 6
Last reply 10/2/2015 - 4:56pm

Started this trial yesterday...just curious if anyone else is participating and what the side effects are? I have a very swollen throat today and its got me a little concerned. I didnt think I would have any effects after the first treatment. Headahce, naseua and this sore throat are bothering me. Finally got rid of the headache and nasuea but not the sore throat...any input on anyone else in this trial i would greatly appreciate.


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Debbieamccoy's picture
Replies 2
Last reply 10/2/2015 - 11:56am

My ast doubled to 660 one week after Keytruda . I have mets to liver . Trying to stay positive 

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Debbieamccoy's picture
Replies 11
Last reply 10/1/2015 - 10:34pm
Replies by: Debbieamccoy, tschmith, Anonymous, Bubbles, arthurjedi007, dfeng

I was diagnosed 3b may/15. Had WLI AND CLND . Only my sentinel biopsy was positive. I had perfectly clear scans on 8/18 on 8/26! I had my first round of yervoy. One week later I started n/v went to the ER and with my history a ct was done that showed probable mets to confirmed by biopsy. All of my liver enzymes are out of range ast 76 alt 284 and allk phos 278. My LDH is 5280. I started Keytruda last week but  I saw my dr this morning and he mentioned his concern st this rapid change of events occurred . I am too has any one else been threw this , I'm discouraged but stil fighting 

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micheley's picture
Replies 15
Last reply 10/1/2015 - 10:09pm

Hey everyone,

 I was just diagnosed with MM end of July. Had the SLB in August, One node, out of three, came back with micromets - then had WAE/reconstruction surgery on face that left some pretty awful scars. My tumor was thick, 1.3 mm, uncerated with a O mitotic rate. Petscan clear for any distant metasteses but showed a possible second cancerous node right next to where the first node was removed. A second opinon on the the neck dissection surgery suggested that the second node could be "reactive?" Not exactly sure how it could be coming up cancerous if it's not but I hope to end up a IIIa - there's a surreal statement there! I will find out after my neck dissection surgery this coming Monday. BIG FEAR THERE!

To say that i am terrified about the future is an understatement. The first month I could hardly work or move. I was in shock I think. I spent far too much time online triying to decipher and figure out my new "normal." All illusions of certainty are gone. I am afraid most of the day. I am seeing a therapist and taking ativan and a sleeping pill but I just don't know how I am going to make it through all of this. You see I have spent most of my almost 50 years of life in fear and sadness -- over things now that seem insignificant, to say the least! Now, there is something to really fear and be sad about and I just don't know how folks get through this. I am a worrier by nature and not so religious, although, I have been working on my spirituality over the years.

Today, I am stuck in self pity, anxiety, and stress about what is to come. I am beating myself up about not addressing that mole sooner! Why did I wait? What was I thinking? I am afraid for me, my husband, and my kids.I know that each letter after that 3 staging is vitally critally for overall recurrence and survival rates and I'm jsut so terrified -- not that IIIa offers any assurances either really.

If anyone can offer words of wisdom, support or general input, they would be most graciously appreciated. How did you deal with your initial diagnosis? How are you dealing with it today? Does it get any easier knowing it could come back anytime? I feel like I'm having a nervous breakdown each day.

I hope to hear back.



Michele C Yerger

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lsmith - MRF's picture
Replies 5
Last reply 10/1/2015 - 8:14pm

Great news! Today the FDA granted approval for the combination of Opdivo (nivolumab) and Yervoy (ipilimumab) for patients with previously untreated advanced melanoma! Read the MRF's statement to learn why this is an important milestone and what this means for the melanoma community:


- Lauren, MRF

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jvictoria's picture
Replies 4
Last reply 10/1/2015 - 6:49pm

Hi All,

Thinking of getting on this Trial... anyone one it? Thoughts / Words of Wisdom?

Stage IIIb Melanoma

Recent Axila Disection



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Anonymous's picture
Replies 6
Last reply 10/1/2015 - 5:26pm
Replies by: tschmith, stars, Anonymous, DZnDef, mrsaxde, Millykamp


I was diagnosted with SSM, staage 1a Clark III Breslow 0.6mm mitosis < 1mm2, I was located in my left clavicle, on the middle of it. I am terrified, I know many people here have been diagnosed with an upper stage, but cancer is not good for an earlier stage neither, it's never good at any stage!!!

I have seen people here who were diagnosted with stage 1 and years later have a recurrence and turn into stage 3 or 4. I am very scared because of that, I know we have new immunotherapy treatments, but what is the outcome or the chances to be NED in case of a recurrence?

Do you have any advice for me...I am really depressed and I am always thinking about that and a possible recurrence!!!

Thanks in advance!



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dfeng's picture
Replies 48
Last reply 10/1/2015 - 5:04pm

Saw doctor yesterday. MRI brain clean. CAT for chest founds few very small spots that could not be identified what they are.


In my case, average one year left. Let's see how long I can make it. 


Three months treatment will start from as early as Thursday, depends on when my insurance company approves it.


Had four treatments Kemo 17 years ago, I think I am ready for any side effect.

D. Feng

My record of progress on the first ipi/nivo trial is here:

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Anonymous's picture
Replies 3
Last reply 10/1/2015 - 10:22am

Does anyone know when the fda will approve ipi in combination with nivolumub? I had previously heard sept 30th but can't seem to find this info anywhere. I know it's close to being approved. Thanks 

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Anonymous's picture
Replies 10
Last reply 10/1/2015 - 12:06am
Replies by: Anonymous, Prd10, stars, SABKLYN, ldub, ET-SF

I have been diagnosed with Melanoma insitu in my left nostril.  It was found by accident during a skin screening that was done.  The doctor saw a small bump ( I had a real hard time seeing the bump) that she thought was basel cell.  They did a biopsy and the bump was just fybroid tissue but they found melanoma insitu under the bump.  They wanted to do MOHS surgery there, but i chose to go to another center that could read the levels on-site.  I was told that with Melanoma the pathology would have to be sent off overnight to have it read instead of being able to read it in the office like you do with basel cell. I wanted to have it done all in one day instead of the possibility of having to go back each day.  So i went to this highly recommended university to have a consultation and then surgery immediately thereafter.  I was totally not prepared for what i was told.  This dr said that they would have to at a minimum take my left nostril off, take cartlidge from my ear to rebuild and then cut from my nose to the corner of my mouth and do what i assume was going to be a flap.  He never really told me that in those words.  I was so upset that i don't think i heard anything else that was said.  I was going in thinking a small MOHS hole and a skin graft from behind my ear.  His bedside manner had no compassion at all.  My husband and i left without doing the surgery that day.  I needed time to research and absurb what i was told.  They would not do a second biopsy which i don't understand why.  I am almost 51 years old and in great health.  Yes, like many i have tanned over the years, but not abused it.  To say the least i am petrified of them cutting off half my face.  It just seems to be so many unknowns.  I am seriously thinking of not doing anything.  If it is in the very early stages who is to say that it will take many many years before it goes any further.  Especially since it cannot be seen with the naked eye. I know God is good and that he has the ability to keep it at bay if he chooses.  I would really like to talk to someone that chose not to have such an evasive surgery on the face.  I am really scared more of the surgery and the recovery than with the fact that it is cancer.  

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On Saturday November 14th there is a forum and round table discussion for those that have had melanoma enter their lives in some way. It is being help at OHSU(Oregon Health &Sciences University) in Portland. There is no cost and and option to see it in Bend or stream it on your computer. Here is a link to our webpage to get information and it has a link to register.

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