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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Patina's picture
Replies 4
Last reply 11/20/2014 - 8:16am

I wanted to share more good news with everyone.  My Mom, who was diagnosed last year with stage IV and brain mets, got the news today from her neuro oncologist. He says that everything looks great with her brain and has given her the OK to start driving in December - unless something unexpected, like a seizure, occurs. - All she wants to do is to start driving again and she is thrilled!

Earlier this month her oncologist said that based on how she has responded to Yervoy (very quickly & all tumors) he believes that she is firmly in the group of people who, at 5 years, had needed no other treatment.  - 92% of responders with durable long term responses, after 5+ years of tracking have had no other treatments and the 8% who needed additional treatment seem to respond to Keytruda ,as well as or better than, they did to Yervoy. So, we know the next step if one is needed.

We can't believe how lucky she's been from the diagnosis to the misdiagnosis to the treatment results. It's been less than a year since she began treatment and just a year since she was diagnosed and we are all very grateful for the terrific doctor's she's had and Yervoy and gamma knife.

I wish everyone had these results now, but am sure they are just around the corner.



My Mom was diagnosed in November of 2013 (age 77) and after seeing 4 specialists (one of which diagnosed her with brain mets that a radiologist "overlooked") and thinking about the options she opted to go with gamma knife radiation for the 3 tumors we knew about and began Yervoy/ipi 4 days later.  - On December 9th, the day of gamma knife, she had 8 treated, but a 9th which was thought to be blood vessels was in reality a brain met and not treated.

In short she had: 2 infusions, got colitis and thrush, had a few hospitalizations due to colitis, finally got the 3rd infusion, got colitis again and then a new radiologist (3rd) treated 17 new tumors in April...   

No seizures, no cognitive dysfunction and EVERYTHING is still shrinking or gone...with no new brain mets and those that were treated are stable and some much smaller or seemingly gone.

---Terrific treatment at USC in Los Angeles with Dr. Wong and Dr. Chang.  

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jennifer83's picture
Replies 2
Last reply 11/19/2014 - 3:12am
Replies by: Kim K, Anonymous

I'm going in tomrrow for a wide-local excision (middle right side of back) and a lymph node biopsy (surgeon said most likely in the armpit area).  I was wondering what I should expect for recovery time?  Should I plan on going to work (desk job) the following day?  Or should I plan on being out the rest of the week?  Any thoughts/advice helps...  Thank you! 


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Anonymous's picture
Replies 3
Last reply 11/18/2014 - 12:05pm

Hi I would first like to say thank you for taking the time reading this and offering any advise. 

Some back ground 

I am 33 female married mother of three. I grew up in southwest arizona. I am Caucasian with dark hair and eyes always tanned easy ALWAYS in the sun. When I was 16 I had a horrible sunburn I was fire red blistered and sick for days again when I was 18 (young and stupid) well my father was diagnossed with melanoma on his back around when I was 16. He also was diagnossed with non Hodgkin's lymphoma when I was 18 and passed away when I was 19. My mother passes away when I was 21 from a heart issues and AIDS (which my father passed on to her) now I have a older brother who has had 3 basil cell and 1 melanoma removed. I don't have any other family besides my brother there are no grandparents aunts or uncles on either side alive so I have no clue on any of my family history. Fast forward to now a year ago I had a itchy raised mole I had since I could remember removed which the dermatologist said was "precancerous" and I need to be seen 6 months. I just had 5 spots removed with shave biopsy a week ago. I am trying to stay calm and wait for the phone call. But I am curios if having 2 close family members and a precancerous mole also all those years in the sun the bad burns and tanning beds should I always think the worse? I also have a high level of anxiety because of my lack of family history/ support. 

Thank you for reading and I am sorry it's long I know I have not been diagnosed, but I just thought this place would be the best of some advise or information. Thank you again 

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Anonymous's picture
Replies 3
Last reply 11/19/2014 - 8:08pm
Replies by: JoshF, Anonymous, JerryfromFauq

I've been Stage 4 for a little over a year. I did Interleukin and went into remission earlier this year. I had a scan a bit ago and the doctor told me I had a shadow but it was infection which the reading radiologist confirmed. I've been struggling ever since as I think I have something wrong with me. I spoke to doctor and he was understanding but also said growth wouldn't happen overnight. I was asked if I have a cough, trouble breathing, chest or back pain. I complained of itchy throat. That could be from many things but I do always have funky ear drainage, stuffy nose and allergy type symptoms. I'm just so nervous and want an chest xray but don;t want radiation. My primary said this could be psychomatic coupled with post nasal issues etc.. What can be symptoms of lung metastasis? I feel fine physically but mentally I'm struggling....anyone else go through this? How do you cope?

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 5
Last reply 11/17/2014 - 9:09pm
Replies by: JerryfromFauq, Frank Two, JoshF, Anonymous, casagrayson

My brother was diagnosed with stage 4 melanonma on 8.22.14.  No primary.  He just completed his second round of IL2 at Providenve in Portland, Oregon and is awaiting a scan to find out if it is working.  This waiting is proving to be harder than the treatment itslef... Anxiety is high and any positive/ success stories for young males who have dealt with this will help our family get through this next week.  He is an otherwise healthy 37 year old male.  Started to have stomach/side discomfort in August 2014 and found out it was due to melanoma.  He does also have lesions on the pancreas and his eyes.   No brain mets.  Not ocular melanoma. Can anybody relate and share? 

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Anonymous's picture
Replies 8
Last reply 11/17/2014 - 7:32pm

We have gotten his fever down. But now he is in bed all the time he stopped eating and moves his legs all night in his sleep. I got him pain meds yesterday. But is this normal. In three days time he was up to always in bed. He is forgetting things but i dont know if its the yervoy or that hes sleepy. Im getting vary worrired the longest time hes been up is maybe 5 min. He has had one dose of yervoy. Is cancer is in brain lungs bones. Any thoughts? Thanks

Crystale sellers

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RJoeyB's picture
Replies 2
Last reply 11/19/2014 - 3:37am
Replies by: rick1981, Patina

I saw this article about ipilimumab on Medscape the other day and found some of the commentary, especially that from Dr. O'Day, interesting:

including the "long tail" durable responses, the management of toxicity with steroids, and the correlation between toxicity and efficacy...  all stuff that's been discussed here previously, but still interesting to read.

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chowmene's picture
Replies 5
Last reply 11/18/2014 - 2:17am

should i consider getting a blood test. my breslow lvl was 0.40 mm, clark lvl 2?

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Frank Two's picture
Replies 15
Last reply 11/19/2014 - 1:22am

My husband started Taf/Mek combo six weeks ago. He had no side effects for the first four weeks. For the past 10-14 days fatigue set in. He can no longer walk upstairs. We've been to the oncologist twice in as many days.  The Dr ordered blood work on Tuesday and everything was normal. She also did a simple muscle test during his visit and said his muscles were fine. That was this past Tuesday. On Thursday he had fever and chills and I called the oncology RN ( Kaiser) to get a message to his onco and advise of what to do. I finally got a call from the Oncology Pharmacist and was told fever and chills are common on the combo and give him Tylenol. At that time I was told that fatigue is also a common side effect and he should take Percocet if he can't climb stairs. Ten minutes after that call the oncologist RN called to let me know that if any other questions arise I should first call his primary care physician. WHAT?  My husband's quality of life has gone downhill quickly. I'm new to all of this and I'm very confused, my husband is upset and I think it's wrong. I would think the oncologist should oversee his health and order further tests at this point. Is this normal?  I would appreciate any input. 

We can do this!  Take time to laugh!

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StephyD83's picture
Replies 4
Last reply 11/14/2014 - 7:14pm
Replies by: StephyD83, Janner

Hi Everyone--

I was Dx with Melanoma In Situ in March 2014 & since have been dealing with enlarged lymp nides etc. In Augest 2014 I had a shave biopsy of a mole on my lower back that I had a long time but became raised suddenly. It came back as begin compound nevus with congenital features. About 1 month later a black dot appreaed in the center of the scar now it is about 1/4 of the way back covering the scar & is very black & itches really bad. It was a large mole 1.6 x. 9 x.1. Should I be concerned?



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jennifer83's picture
Replies 6
Last reply 11/14/2014 - 7:09pm

I got my pathology report and would love it if anyone can help me determine anything from it regarding staging or advice, etc...



A) Skin, Right mid back (shave)

Malignant Melanoma, Superficial Spreading Type, Clark's Level III-IV, Depth of Invastion 0.70 MM, extending to peripheral margin (does this just mean they didn't get it all?)

Synoptic Report:

Specimen: Laterally: Right

Tumor Size: Grossly Indeterminate

Macroscopic Satelite Nodule(s): Interteminate

Histologic Type: Superficial spreading

Maximum Tumor Thickness: 0.70 MM

Ulceration: Not identified

Margins: Involved by tumor

Mitotic Index: 1 per MM squared

Microsatellitosis: Indeterminate

Lymph-Vacualr Invastion: Not identified

Comment: Key poritions of this care were reviewed by one or more additional dermatopathologists

Gross Discription:  Specimen labeld s "R mid back" is recieved in formalin and identified with two patient identifiers.  The specimen consists of a single portion(s) of  ___ skin (I can't identify the word before skin), measuring 0.7 x 0.5 x 0.1cm.  The skin is almost entirely surfaced by a 0.5 x 0.5 cm brown lesion.  The margin is inked.  The speciman is trisected and entirely submitted in one cassette(s) (NC).


Any comments on this would be great!  I'm headed to a general surgeon on Monday to consult on a WLE and SLN biopsy.  



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arthurjedi007's picture
Replies 17
Last reply 11/18/2014 - 6:00am

I think I eat a lot but for the past couple months I lose about a pound every 4 or 5 days. It's starting to add up. I'm on Keytruda, Xgeva and just started taking oxycodone for my leg and hip pain. Before the disease I was 172. Just a couple months ago I was 167. But now I'm 159.

This is what I typically eat in a day:

breakfast - scrambled egg with green, red, yellow and orange bell peppers. onions, mushrooms, ham, tomato, garlic, tumeric in it.  glass of almond milk. glass of orange juice.

morning snack - bananna and juice like kale blazer

dinner - 2 chicken breasts in cream of mushroom sauce, slice of 12 grain bread, sweet potatoes, green beans, juice like daily greens

afternoon snack - bananna, walnuts and brazil nuts, juice like green machine

supper - large pork chop, baked potato, salad, decaf green tea

evening snack - apple, bowl of post shredded wheat and bran with almond milk

2 to 3 bottles of water throughout the day


That's just what I had yesterday and it changes to sometimes steak and other stuff but pretty much similar.

I'm not very active especially since my knee and hip hurting prevents me from walking much.


I just can't figure out why I'm still losing weight. Any ideas?




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jennifer83's picture
Replies 2
Last reply 11/14/2014 - 9:14am
Replies by: Tim--MRF, Emcjones1

I just found out two days ago that a mole on my back came back as melanoma.  My derm had done a shave biopsy and said it came back .7 mm with a Clark's Level III or IV.  I'm confused on whether I should be very concerned, or if this seems to be a superficial case.  My general practioner told me that she saw the pathology report and that it said it was superficial and has not spread to the lymph nodes or vascular system.  I asked my derm if it's possible to determine that with only a shave biopsy?  He said no.  I'm so confused!  

I go in on Monday to consult with a general surgeon who will be removing more tissue.  I'd love to hear what anyone has to say about this initial diagnosis.  I've been following this site since I heard the news and you all are so well versed and supportive.  




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csellers23's picture
Replies 5
Last reply 11/14/2014 - 9:52am

My husband 39 has cancer in his bones 3 one spine one on hip one on ribs. Also 7 in his lungs and 2 the size of grapes and 7 the size if bbs in his brain. We have done full brain radiation and the tafinlar/mek pills. The pills shrank some others stayed the same and 3 got bigger. After 4 weeks they took him off them and onto yervoy. He was put in ER for high fever 103 that wouldnt break. After being put on steroids we got his fever down. That was after his first treatment. Is there anyone out there who has been through this for along time or even became ned? We have 3 kids and one will be here next month. Anyone plz. Thank you.

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