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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Anonymous's picture
Replies 5
Last reply 10/4/2015 - 1:13pm

I read somewhere that Keytruda is not very effective with liver mets compared to mets elsewhere in the body and in fact the ORR is under 20 percent.

I asked my doctor if i could get my liver mets resected but he wanted me to go on Keytruda for a few months first because there is mel in two other places

Now i guess my question is that if I progress in three months time it might well be too late to do anything as the liver mets will be too big.

He also told me that the liver would shut down in about six months without treatment for the liver mets.

All in all very depressing stuff.



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Christine.P's picture
Replies 2
Last reply 10/4/2015 - 11:32am

I just found out yesterday that my melanoma has spread to a tumor near my sternum and I will have a biopsy of another tumor in my breast on Tuesday. (My surgeon was able to do the biopsy on my sternum, but wants a radiologist to do the one in my breast because the ultrasound equipment at the hospital is clearer...)

As I have been doing continued research and reading, I find that I am mainly just overwhelmed and haven't been able to find any clear information about the actual drug treatments for my stage. I know everyone is different and I know it depends on whether I have the BRAF gene, etc. but if anyone can simplify the options/standard treatments for 4a, it would be helpful. 

I meet with the medical oncologist for the first time on Monday and I know I will get more information then, but I want to know as much as I can before I go in so I can ask better questions. 

Some stats: 2 primary sites - rght calf (very deep; skin graft; no spread) and left elbow; full axillary dissection; one large positive lymph node with 20 total removed); and now spread to sternum and possibly breast. (MRI and CT scan showed no mets to brain, lungs, or liver). 

Even you can just share your stage 4a stories, it would be helpful. Thank you all for being here for us newbies...

Christine P. 

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dentholla's picture
Replies 3
Last reply 10/3/2015 - 4:18pm
Replies by: Beehappy, dentholla, geriakt

Today marks week 12 for my husband on the Ipi versus Nivo trial at Texas Oncology.  He is Stage iiib and we are hoping for the best as scans are already underway.  We should meet with our doctor later today to see if we can proceed with treatment.  

He and I both feel fortunate as he has experienced very little side effects.  He is either getting 9mg of Ipi or 3mg of Nivo.  A little fatigue the day of/after treatments.  At the beginning had a slight rash on his arm but it went away.  A little upset stomach here and there but to date hasn't had to offset it with meds.  Bloodwork has been in the normal range and low LDH when they've tested him for it.  He will be tested for LDH again today.

I've read so many positive things about this trial and hopeful that the efficacy we all expect to see with these drugs being used in adjuvant setting prove in the research.  Here's to hope!!!

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Anonymous's picture
Replies 23
Last reply 10/3/2015 - 4:10pm
Replies by: DZnDef, ET-SF, Brent Morris, Bubbles, Ed Williams, Anonymous, geriakt

Anyone know of any Ipi studies currently available for patients who have 3B and have had tumor completely resected with good margins and complete lymphadenectomy?  We just missed the Ipi/novolumab study and I'm having trouble finding anything else similar.  If nothing available, have you heard of any studies coming out shortly?  We have a small time frame.  Last surgery was 9/2/15.   

Alternatively, any feedback on polynoma virus study?  There's a placebo with it so I'd like to find an ipi study if possible.  But still an option (potentially only option) and I'd be interested to hear any feedback. 

Tumor has recurred once locally so still considered stage 3....but I have a feeling this is a very aggressive tumor.  Don't want to wait and see any longer.  However, not interested in doing interferon.

Thanks for any help or feedback you have!


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lsmith - MRF's picture
Replies 7
Last reply 10/3/2015 - 3:23pm
Replies by: Anonymous, Linny, Polymath, Ed Williams, tschmith

Hi all,

We are aware of an unsually high amount of spam on the forums today and we're working to fix this issue as quickly as possible.


- Lauren, MRF

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mom3girlsFL's picture
Replies 2
Last reply 10/3/2015 - 2:17pm
Replies by: mom3girlsFL, jamieth29

Brain mri was clean! Guess i am just dealing with nodes in retroperinoteal area as well as one suspicious lung nodule. Surgery consult was informative-nodes in that area are difficult to get to and high risk of serious complications. He agreed with oncologist to try meds first.

So, just got meds this afternoon, will start tomorrow PHEW!!! I've heard so many comments of people being on taf/mek combo with NO side effects-I WILL BE ONE OF THE RESPONDERS AND NO SIDE EFFECTS!

Thank you to those who responded to my prior post. I have always appreciated the knowledge and support from this forum!


Do not fear tomorrow, God is already there.

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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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