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.

Expand/ Collapse Topic
Replies By
View Topic
Muru's picture
Replies 2
Last reply 12/26/2013 - 11:48pm

Dear All,

I am living out of India.
I am a melanoma Stage III patient with Unrectable tumor in my Neck. I have multiple Tumors in the Neck and LaryngoPharynx area.
Please find attached the summary of the treatment.
Summary of the treatment
I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed in the first surgery . I was under constant observation. I was cancer free for 5.5 years. in Jan 2013 melanoma has recurred again in my larynx area. . Now my entire Voice Box has been removed on Feb 6th 2013 during the second surgery. ImmunoHistoChemistry for C-KIT came as positive and tried C-KIT inhibitor Imatinib oral tablet for a month.
But still Melanoma has come back to me again in Right Side Level II and Level IV Lymphnodes within 3 months of my 2nd Surgery. I had undergone 3rd Surgery for the radical Neck Dissection of Lymphnodes in May 2013.I was under Interferon Injection for 3 months, Melanoma has recurred again in Laryngopharynx and Neck nodes. Surgeons have told that surgery is no more possible for my case. As per PET CT it has not spread to any other internal part of the body.  My braf mutation is negative. 
Imported Yervoy and took the first dose of yervoy on Dec 5th. I did not have any side effects so far...
Also I did not see any see any response so far for the  last 10 days. Still the tumor growth is in increasing trend..
Is it too early to see the response from yervoy. How long we can wait for Yervoy to respond. Please let me know your opinion on this.
If Yervoy does not work, do we have any other option? Is high dose IL -2 an option? 

Please share your views.



Login or register to post replies.

mikvahnrose's picture
Replies 8
Last reply 12/28/2013 - 2:43am

I have had a funny looking mole on my back for (as long as i can remember 3 years) but it is possibly longer. My boyfriend said it never eally changed but always worried me. I got it removed two weeks ago and the derm did say it looked odd but he wasnt too concerned about it. He told me that when looking under the dermascope it didnt have an blue or white halos, color regression, rapid cell movement.. all that was was spotting?? I think thats what he said. Anyways he sent it to the lab (called Mohs-tek biospy prep lab) and about a week and half later got a call from the nurse to tell me everything was fine. It was benign. I was overjoyed to hear the news. I cried to her saying thank you, you don't know how much stress ive been; waiting for the results. That was 3 days ago.

Now i am thinking, they told me it was benign. But what if they misdiagnoThis was the mole.sed it. How common of an occurence is a melanoma misdiagnosed? 

Questions have been running through my head: Should i trust the pathologist? It that company a reputable company? 

I sound crazy but i want an accurate answer, i don't wnat this thought to linger in my mind of "what ifs"

Does this sound justified to get it re-examined or am i just being paranoid. Does it cost anything to ask your derm if they can do a second pathology report on my mole, i don't have insurance so price is a concern. But i am willing to pay the cost if i get an accurate answer. 

Has this happen to anyone? What should i expect or do.

Login or register to post replies.

Mat's picture
Replies 3
Last reply 12/16/2013 - 9:33pm
Replies by: Mat, Moodypoodle, Richard_K

I have a good friend that was just diagnosed with pancreatic cancer.  Does anyone know of a resource that is comparable to this site for pancreatic cancer patients?

Login or register to post replies.

Codnibbler's picture
Replies 1
Last reply 12/14/2013 - 12:22pm
Replies by: Janner

Hey guys, I have a mole in my armpit that is concerning me. It is starting to itch and the skin around it is getting flaky. I showed it to my Primary Dr and he wants to biopsy it. I have had 10 displastic moles removed in the past 10 years since my chemo & radiation for Hodgkins Lymphoma. I have an apointment for the biopsy, in 2 months. Any advice?

Login or register to post replies.

nancyg's picture
Replies 7
Last reply 1/22/2014 - 1:02pm


So my husband had his first scan after 4 doses of ipi... Out of six tumors chest/lung/nodes... 1 in node gone yea!...1 shrunk(do not know specifics yet)... Other  4 plus two on shoulder stable.... When it comes to Melanoma.. What exactly is stable ?? There is still disease in my eyes there is still a problem.... NED would be nothing left correct?? So when the word stable is used... Does one move on to a different treatment... We still have to let ipi work... But I am always thinking ahead ... Just scared but VERY cautiously optimistic!!! 

Thank you in advance for any insight you could give me!

God Bless each of you on your journeys ...


Login or register to post replies.

arthurjedi007's picture
Replies 4
Last reply 12/17/2013 - 9:39pm
Replies by: BrianP, arthurjedi007

Had my second dose of ipilimumab. Hoping it will work but trying to find the best next step if needed. So far did pallative radiation, zelboraf and now yervoy. fyi the zelboraf shrank nothing.

This link is great info of a melanoma webinar:

Based on the webinar it looks like the best chance for long term success would be a combo of ipilimumab for ctla-4, nivolumab for pd1 and MPDL3280A for pdL. But the best I see are 4 trials for ipi and nivo.

Anybody know a trial for all 3? Or am I missing what the best next step is?

Also how long should I give ipilimumab to work? I was thinking 10 weeks after the last dose cause that's when the drs plan to do a scan and decide what to do.

Thanks for any info.


Login or register to post replies.

hdelancey23's picture
Replies 4
Last reply 12/14/2013 - 1:52pm

So my mom saw her doctor last week and he said that once the steroids that she is taking to help reduce swelling in her brain quit working then things could go fast.  She is still at home and wants to stay home as long as possible. Yesterday I learned that her pain is increasing.  Her back is hurting and her head is hurting alot.  She is having a hard time getting around and getting up to get to her morphine.  She has been taking the steroids for around four weeks now.  The doctor said that the steroids could stop working as well around 6-8 weeks.  She told us yesterday that she may be in hospice before Christmas.  It makes me sad that she is in so much pain so I really hope that she decides to start Hospice soon.  To me Hospice does not meanthat you are giving up it just means that you need extra help in managing pain.  So we will see how things go this next week.  The good news about her starting Hospice is that she won't be in so much pain and she will be closer to us so we can see her more and help out a little more.  She remains unbelievably strong and brave, she has never once given up and still hold out hope for compassionate use of the PD1 trials.  

Login or register to post replies.

bradcope1's picture
Replies 3
Last reply 12/19/2013 - 8:21am
Replies by: bradcope1, Jocks wife, Anonymous

Yesterday we were told by our oncologist that although our daughters tumor in her lung is operable, the reason they recommended systemic (IL 2) over VATS was the short duration of time between initial primary 3B diagonsis and diagonsis of lung tumor in stage 4---exactly 2 years. They say 3 years is a better indicator of success. In my last conversation with the surgeon, his reasons to delay surgery were to achieve 3-6 months assurance that there was only one site. We are well within that time frame with only one tumor. We are soliciting second opinions Sloan and Sarah Cannon on this, but would be interested in hearing from anyone with experience, long or short time between reoccurance or CR.

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 12/16/2013 - 3:41am
Replies by: Anonymous, BethA in VA, kpcollins31

I hope this post will bring some hope to those who have been diagnosed with metastic melanoma.  This is about my daughter, who was diagnosed with stage 3C melanoma, ten years ago.  She had radiation treatment for 5 weeks, but was unable to tolerate the interferon treatments, so she has had no treatments for the last ten years.  She has been NED all this time, jogs five miles a day and looks like the picture of health.  If you want to see her story, see her profile under the name of Jompy, diagnosed Dec/03.

Login or register to post replies.

ironberg's picture
Replies 5
Last reply 12/28/2013 - 12:41am

I am supposed to make an appointment with a dermatologist ...


what can I expect?


I wasnt told anything except that my Melanoma biopsy wasnt good....



Login or register to post replies.

NYKaren's picture
Replies 11
Last reply 12/16/2013 - 3:55am


according to UPS, my Mentkist will be arriving tomorrow. So far, I've experienced almost no side-effects from the Trafinlar. 

What have those who are on the combo experienced?  Rash, diarrhea, etc?

Al, how's it going for you?  Did Dr P start you on 1.5 mg 2/day before increasing to 2mg twice daily to check your liver function?

I can't believe that I am scared about this, but I am!

thanks for all advice/experience. 


Don't Stop Believing

Login or register to post replies.

doro's picture
Replies 1
Last reply 12/12/2013 - 8:25pm
Replies by: NYKaren

Hi everyone,

I read the board regularly but haven’t posted in awhile because things have been stable. Fortunately, I have some good news to share.  A little over a year ago, my father was diagnosed with melanoma and had an 10 hr surgery to remove the primary and lymph nodes (posterolateral neck dissection). Last week (one year to the day after his surgery), we had an appointment with his oncologist who shared that his most recent PET/CT was clear. So Dad has officially reached 1 year NED!  

I don’t think we had allowed ourselves to really think about the one year milestone before the meeting, but it feels really good. He was diagnosed just before Thanksgiving last year, and it was a really tough holiday season with so much uncertainty about his prognosis and traveling to get second/third opinions while he was still recovering from the surgery.

For those interested, my father started on interferon but after 3 weeks of high-dose he ended up in the hospital with a severe case of diverticulitis. It took awhile for the inflammation to subside and due to this sensitivity towards colitis, his oncologist recommended BRAF as the next mode of treatment (Dad’s primary was at the back of his head and with positive nodes on both sides of his neck we got varying diagnoses of Stage III and IV, which is why he first tried interferon but then was able to get BRAF). I know some on this board are of the opinion that it’s best to try everything else and save BRAF for when it’s really needed, but we decided to accept the doctor’s advice. He really stressed the importance of keeping Dad healthy as long as possible (and perhaps he will not recur anyway – fingers crossed!) while other new treatments, like antiPD1, are being developed. Dad started on Zel and switched to the combo after it was approved, which has been a much smoother experience for him.

Anyway, thanks everyone for always posting advice and being so supportive to each other. It's great to have a community like this to tap into. There have been a few new posters on the board with new diagnoses so maybe this update will help things seem a little less scary.


Login or register to post replies.

Anniejoy1's picture
Replies 6
Last reply 12/17/2013 - 9:57am
Replies by: Anniejoy1, Janner, POW

Hi all:

It's been 4 months since my WLE & lymph node dissection. I recently had 2 urine tests come back positive for Melanin, has anyone else experienced this?


I'm hoping it's some supplement I'm taking that has caused a false positive.




Login or register to post replies.

scrapps's picture
Replies 2
Last reply 12/12/2013 - 1:03pm
Replies by: scrapps, POW

So i do not  frequently post, but I do come here to  listen and learn rom all the other brave people figting this beast. In Aug of 2012  I had a WLE and SLN biopsy perfomred after discovering a 1.7mm ulcerated, nodular melanoma. One microscopic met in the SN. Had the CLND last October and decided on the peg interferon because I didn;t think I could do  the wotch and wait. I made it through 3 self injections and couldn't rationalize the side effects for the minimal channnce it helps. Since then, we have been doing the "wait and watch" I have had 2 PET/CT scans, the first of  which wass clean and had the second yesterday. Asmall hot  spot was found in the muscle int he back of  my left  shoulder. My original mel and CLND was on the right. Doc said it was not a usual pattern for  Mel, but we all know it  doesn;t follow  many patterns. The other confussing thing to all of us was that the area that lit up was not seen on the CT portion of the scan.Doc suggested an US and biopsy which I am trying to schedule. On my car ride back  after the scans I started processing the info and remembered I had a tetanus booster last wed. in the back of  my left arm. Has anyone heard of immunization  sites showing increased uptake in a PET giving a false positive? The articles I found showed some false positives assocciated with the flu shot so I am holding out hope  that is what it is.


Thanks for the help



Login or register to post replies.

WendyD.'s picture
Replies 5
Last reply 12/14/2013 - 12:37pm
Replies by: Janner, WendyD.

I was just diagnosed with melanoma Dec.6,2013. Here is what my pathology report says: Malignant Melanoma Breslow thickness .30mm, no ulceration,mitotic index per mm square 0, peripheral margins negative, deep margins negative, lymphovascular NIL, AJCC/TNM classification: pT1a NX MX. My doctor said he got all of the melanoma out during my intial biopsy. So with that said will I have to have a SNB and WLE? Any information will be greatly appreciated.

In God I Trustsmiley!

Login or register to post replies.