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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scots's picture
Replies 2
Last reply 2/8/2016 - 11:44am
Replies by: scots, MoiraM

I have been told I need to get in Treatment as soon as possible, but where's the sense of urgency on the doctors / hospital part.  If I do not like what I here or they have limited or no options I have to start the whole process over. Contact a new specialist for an appointment go through all the paper to get files and reports and CDs of scans to the next doctor and all the while time is passing through my fingers .  I do not know why it's so hard for one doctor to refer you to another doctor and pass on all the records I spent weeks sending to them.  I know it's all on me but it would be nice to have some help and and cooperation between doctors. I have worked with my oncologist in town who is not a melanoma specialist.. He referred me to a Duke specialist. I'm waiting to hear if I qualify for a trial at Duke. I have also talked to NIH and sent them all my records. They said the TIL treatment is too risky for me. I also have an appointment at MSKCC in two weeks. Now they have all my records. With all that said I'm waiting.......I have liver mets after five years of NED. I have tried ippi and Opdivo but it did not work. I do not have the Brad mutation, I have a mekmutation which I have been told is rare.   I have filled out my profile if you would like to see detailed information on what I have done. I'm great full to a have great place like this to vent and find people in similar situations.




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Anonymous's picture
Replies 4
Last reply 2/8/2016 - 11:03am
Replies by: CHD, Anonymous

Hi, just wanting to see if there is anyone out there with vulvar cutaneous melanoma?  I have seen posts from several with mucosal-type but wondering about cutaneous.  Would love to hear your stories and what you have been treated with, and how you are doing.  Thanks for sharing!


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Anonymous's picture
Replies 44
Last reply 2/8/2016 - 10:28am

Has anyone else here been diagnosed mucosal?

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Anonymous's picture
Replies 3
Last reply 2/7/2016 - 10:22pm
Replies by: Anonymous, Rita and Charles

My husband has been dealing with debilitating pain and swelling get in his ankles. The doctors say it's a reaction to the meds and to take benadryl. Can anyone tell me what is actually happening and if there is anything else he can do. He hates benadryl.


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jae p's picture
Replies 11
Last reply 2/7/2016 - 9:16pm
Replies by: CHD, jennunicorn, WithinMySkin, Anonymous, Janner, gregor913

Hello to all! Well, this month marks my 2 year anniversary of being diagnosed with stage 2A melanoma at age 24 (I'm 26 now) -- 1.2 mm, mitotic rate of 2, and ulcerated.  

Lately I've been having a whole lot of anxiety over the whole "ulcerated" thing, now that I'm approaching two years on.  I don't know a whole lot about prognostic factors, but what I do know of ulceration haunts me.  

In the past month, I've floated the idea of getting a CT scan just to check up on the state of my health by the melanoma specialist and the oncological surgeon (I'm with Dr Pavlick at NYU Langone).  However, despite my having been stage 2A, they're both incredibly confident about NOT putting me through any unnecessary scans and have told me as such.  I've asked them both twice, and they've told me this twice.  They both want me to continue seeing them, but all they do is palpate my lymph nodes and do blood tests every six months.  

I love their assuredness, but is this lax approach the general protocol for my stage?  I keep feeling like I ought to be proactive and be sure I'm doing everything I can to "catch" anything early, but maybe I'm misguided in thinking of scans as the way to go. I have no idea!  My prognosis just seems so dire to me lately that I feel like I should be doing... something.

Thanks for letting me blow off some steam, and if anyone has any insight into any of this... I am all ears. Thank you to all in this community for being a wealth of knowledge and compassion to each other; it's very heartening to read.

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Anonymous's picture
Replies 5
Last reply 2/7/2016 - 7:22pm
Replies by: Anonymous, Janner

I had my tumor from my back removed in october. Do they keep this tumor or just throw it out. They never tested to see if I was Braf and I was wondering if I still could have a second opinion on pathology if the tumor was kept in a lab. I know it's late but I'm starting to doubt the pathology. It was positive for melanoma but was not really that detailed a report.

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jamieth29's picture
Replies 20
Last reply 2/7/2016 - 6:05pm

Went in today for scan results and brain mri showed 3 spots. Two 3mm and one 4mm. The doctor wants to wait two weeks and do another mri to make sure they are mets as he said he's not convinced they are. They were not present on mri in June said there is no edema for whatever that's worth. I have a appointment with radiologist Monday. The body pet/ct was clear. The doctor wants me to go ahead and start nivo next week. He said i shouldn't do anything until we repeat scan. Don't know what else they could me it was pretty cut and dried they didn't show in June and are now present so...advice? Could hardly be around kids when i got home so scared that the kids will have to watch this play out.

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Anonymous's picture
Replies 6
Last reply 2/7/2016 - 12:44pm
Replies by: Anonymous, Janner, btcedarr

New small (~3mm) mole noticed, a week later removed. Looked like a black sharpie dot. When zoomed into with a camera edges were not smooth, scattered dots of pigment surrounded the mark. 

Biopsy Diagnosis: Mild dermal inflammation and pigment incontinence; see note. Note: Sections of the bisected shave biopsy show a mildly acanthotic epidermis with basal layer pigmentation. The center of the biopsy shows a focus of hemorrhagic scale. There are scattered melanophages in the superficial dermis. Clinical correlation is recommended.


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MoiraM's picture
Replies 15
Last reply 2/7/2016 - 9:17am

I went down the Ipi route for treatment of my Stage III melanoma. Good news is I am a responder and, six months later, the tumours in my lymph nodes have shrunk so that they can no longer be distinguished using a CT scan. (Bad news is that I have ended up with damage to my anterior pituitary gland that is probably permanent.)

My specialist has shown me a graph that appears to show that if I make it to three years then I am likely to make it to ten but she cannot answer my question, which is What proportion of 'Ipi responders' make it to the three year milestone without a reoccurence?

Has anyone got an answer to this question? Or any other relevant information (maybe like a link to a useful research paper).

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals

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Anonymous's picture
Replies 15
Last reply 2/7/2016 - 4:47am

What would be a worse prognosis for stage 3. Having a ulcerated melanoma with micromets or having a macro node without ulceration. Just curious anon

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Christine.P's picture
Replies 8
Last reply 2/7/2016 - 2:51am

A brief history: I am stage 4A with current tumors in my left breast and near my sternum. I started Opdivo alone (insurange dragged its feet on the Yervoy combo and my doc didn't want to wait. That's a whole other story.) in November and will have my 5th dose tomorrow.

Scans last weeks showed "significant decrease in size in breast tumor." My surgeon wants to take it out anyway. (The ultrasound tech told me it was "half the size" - even though she's not supposed to tell patients anythins. Not sure about the other tumor; will find out the CAT scan results at my appt. tomorrow). I just recovered from several procedures - removal of two primary tumors, one on my leg so deep I needed a wound vac and skin graft, full axial lymph node removal, biopsies of the breast and sternum tumors, and a port implant. I just don't want more surgery right now if I don't have to. 

I know everyone's experience is different and what works for one may not work or be best for another, but I am just curious about others' opinions on surgery if tumors are clearly shrinking with chemo. 

Thank you!

Christine P. 

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JackieH's picture
Replies 3
Last reply 2/7/2016 - 2:11am
Replies by: jae p, mdoh, WithinMySkin

Every year on the anniversary of my first diagnosis I revisit this site where I used to scan all messages looking for posts that gave me hope. So I write this esp. for newbies  to remind people there are many of us who no longer visit this website.  My  daughter was 9 when I was diagnosed with my first melanoma (stage  2b) I was diagnosed w my second primary 2 yrs later. My daughter is now a young woman of 23. I hope my message might help give some comfort to others.    


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Anonymous's picture
Replies 10
Last reply 2/6/2016 - 7:20pm

If I'm taking yervoy and have no side effects does that mean it's not working. I mean do you have to have side effects for it to be working. Anon

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Momofjake's picture
Replies 16
Last reply 2/6/2016 - 7:02pm

Hi my friends,

i have had a hard time getting on here since Artie. But I need a little advice. Jake has been on keytruda and a bone strengthener for almost 8 mo now. The first scan showed big improvement and the visible tumors shrank completely. Then Jake moved 15 min from home to try a light semester of college. He shared a room w his brother:) So glad he went! But next scan no shrinkage and it grew. 2 worst new mets--throat and rectum. All internal tumors remained--liver, lungs, spine, bones, sinus...he has normal side effects w white eyebrows, white side burns, some vitaligo and occasional mild rash that doesn't bother him and of course fatigue. he hasn't been out of his bed in 3 days. Today will be 4. It's been 10 days since treatment. He has severe aches and now a fever. Loss of appetite and now a little nausea. His last blood work showed his kidney numbers weren't great, liver struggling a little and tumor marker up again. Before this he has been very active. Fatigue though. He has moved back home to focus on his body. It's all he does 24/7. Sleep a lot, eat crazy healthy, try to gain weight, gym. He does nothing else and all his friends are gone. It's hard to watch. 

I do all I can for him. k. Day 4 or more in bed. TIME TO SEE THE DOCTOR??? He says it feels like flu and doesn't want to go in. 

Oh how I hate the many decisions. 

Thanks for getting thru the novel. 

Prayers and love to you all who are in this!

Kerri--mom of Jake

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gregor913's picture
Replies 12
Last reply 2/6/2016 - 6:06pm

Hey everyone so I finished my second dosing of ippi and have my 3rd scheduled for Feb 15. Right now my oncologist has me scheduled for 4 doses total of the 10mg/kg. If everything goes well after all 4 doses here is my next question. I was reading the yervoy website for preventive care and it says that you should have the 4 initial doses then every 12 weeks for 3 years maintenance doses.

Was just wondering the people who are taking ippi right now if there onc has them scheduled for the maintenance doses because mine does not. Do you need the maintenance doses?

thanks Greg

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