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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Erinmay22's picture
Replies 9
Last reply 5/26/2012 - 9:39pm

So I just had my latest scans.  I've been lucky to be clear since I had nodules show up in my lungs Jan 2011.  This time the scan shows a small section in my small intestine that states there is significant thickening of the wall?  I also have several lymph nodes around that area that are swollen.  

I must have some sort of small GI bleed since my hemoglobin was down to 5.6 on Tuesday when I went in for my appointment.  Got hospitalized to get 3 units of blood and responded very well to it.  

Sounds like the plan right now is to go ahead and start me on Zelboraf.  We already know I'm braf+ from my lung biopsy in March 2011.  There was talk of surgery but they don't now if they would get all the lymph nodes.  So the plan is to start with treatment.

Guess I'm wondering what thoughts/suggestions people have on melanoma in the intestine.  I've been told that it's a common place?  Wondering if there is a possiblity it could be something other than melanoma?  I know the only way to know is a biopsy.  Surgeon is saying that the only way to biopsy is to cut open and then might as well just take the section out...  I have lots of questions for my next appointment.  

Thanks everyone!

Erin "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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pbnjelley's picture
Replies 10
Last reply 5/31/2012 - 11:43pm

I was going to post this two days ago when I got the news and I didn't because I was just too busy celebrating!  I have been on Zelboraf for 3 months because of several mets on my lungs and got all the crappy side effects like it seems everyone else has suffered.  I prepared myself for the idea that my life would be forever diminished because I moved around like a 90 year old instead of the 27 I just turned.  I was frustrated for 3 months wondering if it was even worth it to go through this when I had to reduce the medication to half the dosage and I figured it wouldn't even work.  And then came the day for my scan on Tuesday to see if there was any progress being made.  Miracle of Miracles - not ONE spot can be seen.  That's right folks, in only 3 months the Zelboraf has taken care of all visual spots!  My oncologist and I decided that I would continue taking Z for 3 more months and just try to make sure that no bad cells could remain and we even upped the dosage to see if I can handle it and really kick this thing in the butt.  I'm not gonna lie, I still am sore and moving slow today, but there is nothing hurting about this smile!  In three months I will get my scans and confirm NED and then a month later, I will marry the man of my dreams and start the beginning of a long life with him.  I never thought that I would see a "clear scan".  I was told that possibility only occurred in about 2% and I hung my heart on that number.  I have thanked God every spare minute I have had and pray that this nightmare never returns.  I pray for everyone who is going through this trial in life and I hope for positive outcomes and happy smiles.  So many people on here have influenced me with their positive attitudes and I thank you for your everlasting comfort.  Everyone on here is a hero and I wish you all the best!!!

Today is my day!

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Rea's picture
Replies 16
Last reply 5/28/2012 - 11:03pm

I haven't posted in a while, but wanted to thank everyone that has responded to my posts over the years and for the support I received here.

This was the first websie and bulletin board I found when researching melanoma for my husband almost 10 years ago.  It has been very helpful to me.

He lost his battle on Saturday, 5/19 after a courageous journey.  He was a true fighter and never gave up hope.  I know he's in a better place now -- free of pain of this terrible disease.

I pray for all of you battling the disease.  Stay strong!

God Bless

Rea Hix

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Gene_S's picture
Replies 1
Last reply 5/23/2012 - 11:18pm
Replies by: H555



SCREEN: Melanoma Deaths Reduced by Half in Largest Study Ever


Elsevier Global Medical News, 2012 May 18, B Jancin

In the Pipeline: BRAF-Plus-MEK Inhibition Slows Melanoma


Elsevier Global Medical News, 2012 May 17, P Wendling

Women 30% More Likely to Survive Melanoma Than Men


Elsevier Global Medical News, 2012 Apr 30, MA Moon

Cyclops Lambs Played Important Role in Vismodegib's Approval


Elsevier Global Medical News, 2012 Apr 4, D Mcnamara

Limb Perfusion for In-Transit Melanoma Reduces Distant Recurrences


Elsevier Global Medical News, 2012 Mar 30, N Osterweil

Melanoma on Scalp Signals Worse Prognosis Than Other Sites


Elsevier Global Medical News, 2012 Mar 29, N Osterweil

Extramammary Paget's Needs More Than Mohs


Elsevier Global Medical News, 2012 Mar 21, B Jancin

New Vemurafenib Data Highlights Long-Term Melanoma Survival


Elsevier Global Medical News, 2012 Feb 22, MA Moon


Expert Opinion

Treatment of Brain Metastases in Patients With Melanoma

Free Journal Content

Lancet Oncol, 2012 Mar 27, R Fisher, et al


Journal Scans: Research

Adjuvant Radiotherapy After Lymphadenectomy for Melanoma


Lancet Oncol, 2012 May 9, BH Burmeister, et al

Possible Link Between B-Cell Lymphoproliferative Disorders and Merkel Cell Carcinoma


Br J Haematol, 2012 May 1, T Tadmor, et al

Increased Risk of Non-melanoma Cancers With CDKN2A Mutations


J Natl Cancer Inst, 2012 Apr 24, B Mukherjee, et al

Association of Galectin-3 Expression With Melanoma Progression and Prognosis


Eur J Cancer, 2012 Apr 1, ER Brown, et al

Ipilimumab in Patients With Melanoma and Brain Metastases


Lancet Oncol, 2012 Mar 26, K Margolin, et al


Journal Scans: Review

Treatment Advances in Basal Cell Carcinoma: Hedgehog Inhibitors

Free Journal Content

Semin Oncol, 2012 Apr 1, R Kudchadkar, et al

Primary Malignant Melanoma of the Head and Neck


Oral Oncol, 2012 Jan 20, AK Vikey, et al

Emerging Molecular Classification System for Melanoma Treatment


Lancet Oncol, 2011 Sept 1, E Romano, et al



Personalized Medicine: A Long Way to Go

OncologySTAT Video Network

EJC News Focus, 2011 Nov 1,

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Replies by: Janner, La Luna, WendyR3

So I am going absolutely nuts waiting for my biopsy results. I had a basal cell in 2006, so I'm used to biopsing any strange spot, but this one was different.

The spot started a year and a half ago, it was a tiny black spot that hurt and felt like a splinter. The size of a splinter, too. Tiny. I have a black metal swing that had broken a little, and I thought that I had sat on a tiny metal shard. My friend tried to get it out to no avail, and a tiny bit of pus came out at that time. Over the next few months it bled occasionally and hurt sometimes, I thought it was a trapped metal splinter. Did not have the ABCD's of melanoma so never crossed my mind that it could be cancerous. And did I mention it was tiny.

Fast forward to last week. My hand brands across my leg and I saw a black spot, raised about 2mm in diameter. Obviously not a splinter. And a lot bigger than the tiny dot of a few months ago. It was round and a little tender. I scratched at it and part of it came off and it started bleeding a lot. I looked online and scared myself with nodular melanoma pics. It looks exactly like some of the pics.

So I rushed into derm's office and got a biopsy. He mentioned it could be many things and that sometimes basal cells can have pigment. My normal doc is on vacation so I don't know how I feel about this guy. He told me not to" lose sleep" because whatever it was it was small, but from what I read about nodular that doesn't really matter.

Anyway, I'm going nuts and I feel like I can't stand another moment of waiting. It will prob be a couple more days. I feel sick I'm so stressed. I have 2 young children.

Did anyone have nodular melanoma that felt/looked like a black splinter?

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Anonymous's picture
Replies 2
Last reply 5/24/2012 - 9:13am
Replies by: Gene_S, gabsound


I am new to  this forum. Thank God I found all you wonderful warriors.

I am stage 4 melanoma patients. DX in 2009 and have had multiple surgeries. My first systemic treatment is IPI (yervoy). I just had my 2nd infusion.

Yesterday, my blood work showed elevated liver enzymes (Alk Phos, AST, ALT). My doctor told me my liver enzymes (Alk Phos, AST, ALT) were elevated out of the "normal range". He told me that I might not get another IPI infusion because my immune system is causing these liver enzymes to be elevated. I will have my blood tested again in 3 weeks.

I need your help with information regarding elevated liver enzymes (Alk Phos, AST, ALT).

Anyone on IPI or any other drug that caused elevated liver enzymes. What happened to your liver (liver enzymes)? Was the drug stopped or did your immune system just stop inflamming/attacking your liver. Did you liver enzymes (Alk Phos, AST, ALT) go back to "normal"

I am not sure if my liver is permanently damaged (or will become permanently damaged) because of the drug. Is there anything that I can do (perhaps eat certain foods, supplements, ets) to help my liver. I am very worried.

Thank you so much for taking the time to read my post & to give me any feedback & advice.





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stepmomcathy's picture
Replies 2
Last reply 5/24/2012 - 11:45pm
Replies by: Linny, deardad

Hello, my stepdaughter Rhonda has been  diagnosed with stage 4 Metastatic Melanoma in Aug 2011. She has had a brain and lung tumor removed. She has been on Zelboraf for 6 mons and is doing great. She has been thru the side effects like, rash, loss of hair and the worst for her is getting sun burned so easily.

Does anyone have any remedies to put on the sunburned areas to relieve some of the pain. Right now she is burned with blisters on her foot and bottom lip. She covers up with sunblock, clothes and umbrella. We have tried almost everything to put on the burn, with no luck in taking care of the prickly feeling she has.

Thank you for any help.

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Anonymous's picture
Replies 6
Last reply 5/23/2012 - 9:47am
Replies by: natasha, teri0915, Anonymous, Janner

Is it normal to still feel pain sometimes (not bad pain, sort of dull pain) in the WLE scar and even under the arm near the SNB site?  It's almost 10 months after surgeries.  I don't care about the pain, just want to be sure that isn't some sign of a recurrence, etc..  I know that would not usually present itself as pain, right?.

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Cari728's picture
Replies 4
Last reply 5/23/2012 - 12:39pm
Replies by: Eileen L, natasha, Linny

I was just wondering if any of you took any natural supplements after being diagnosed with melanoma.  Since my dad was diagnosed we have been  flooded with people suggesting natural teas and supplements that help fight cancer and some that help deal with depression.  He has started taking some and I'm afraid we might be hurting him more than helping.

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noisy77's picture
Replies 3
Last reply 5/24/2012 - 11:50pm
Replies by: ockelly, noisy77, Janner

This may be a dumb question but what is the difference between macrometastasis and micrometastasis.  I have never heard my mom mention this just that she has acral melanoma with 5 nodes positive.


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teri0915's picture
Replies 3
Last reply 5/23/2012 - 9:14am
Replies by: Janner, teri0915, Anonymous

Ct resluts so no growths!! Mri next month will show how the brain and spine mets are doing. Finally heard back about the three biopsies i had almost two weeks ago. One is a normal mole the second is mildly atypical, excision scheduled in June and the third on my melanoma scar is moderately atypical so excision also scheduled for June.
Oddly enough though my platelets and white cells are strangely low so i can not start my next cycle of temodar, which should have started tonight, until my counts are back up. Hopefully that will be soon!
Keep your chins up everyone!!
Best wishes

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

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Replies by: Dr. Mark, Nicky

Hi all - I've posted this in a number of places not knowing which forum I was actually supposed to be in so hopefully I'm in the right place now.

So, here it goes...

My father was diagnosed with invasive melanoma with the desmoplastic sub-type about 2 weeks ago. Below are some highlights of the report:

A) Invasive Melanoma of the Scalp - Desmoplastic Type

         - Clark Level IV; Breslow Depth 5.1mm

         - Negative for ulceration

         - Margins negative

         - One benign sentinel node

B) Primary tumor: pT4a, 5.1mm depth, no ulceration, mitosis 2/mm2

     Regional Lymph nodes: pN0

     Distant Metastisis: pMX

     Pathologic Stage: IIB

     Lymphovascular and perineural invasion: Not identified.

I know of only one other person with this sub-type (well, only 1 who replied several days ago -- Thanks Kathy!) on this board and I just know there's got to be someone else.

Like I mentioned, this was today and I'm more concerned with the depth. They tested his blood on the spot which was negative as well as all blood panels (liver, etc.) -- I do know that this isn't really that much of a factor in determining though.

He's set for a CT scan and whatever else is needed and there will most likely be some adjuvant therapy because it was so deep (I'm guessing). Next week, he is also scheduled to meet with his radiologist as well as a geneticist to determine if there is a genetic pattern in our family -- which is interesting, considering my grandfather died of pancreatic cancer, his brother died of liver cancer, my uncle is in remission of colon cancer, and other relatives have had other kinds.

I would say based on what I've read, that the promising factor in my father's case is that it is a sub-type that is usually unlikely to metastasize; however, I still think this sub-type isn't fully understood -- and also given that it has a high rate of recurrence.

So, sorry everyone for the long-winded reply but this is really devasting to my family and I'm the one on the research end. My mother called me earlier and said she started crying when they took off the bandages and it was basically a crater in my father's head. This of course made me upset.

If ANYONE has had any 1st hand experience, I would appreciate the info, encouragement, etc. We are in the East Texas area and have some really great docs, including lines of communication with MD Anderson for our second opinions, but personal experience would really mean a lot to me.


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Janie64's picture
Replies 4
Last reply 5/23/2012 - 8:27am
Replies by: Anonymous, Eileen L, Janie64, washoegal

HI and Good Evening.  I just found this site and was hoping I could get some information regarding my Mom, who is 71.  Her background is this:  She has been in remission for 20 years.  Just over a year ago they found disease in her left lung.  They removed the upper lobe of the left lung.  She had a CT scan about 4 months ago and all was clear.  They did another scan about 1 month ago and found disease in her spleen and stomach. 

Yesterday she was in the hospital having laporoscopic look see and they closed her back up without removal of disease.  They said if they removed her spleen and ALL of her stomach they still would not have gotten all the cancer. 

I know my time with Mom is limited, but I cannot find out a time statistic.  I was hoping someone could share with me what to expect.  Is average time based on this being so advanced 4 months, 6 months etc.  I know the answer will be a sobering one, but I would like to be better prepared.  I am flying home in about three weeks to see her. 


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Hi All,

I'm on what I think is a fairly heavy CT scan rate of every 60 days, and have noticed that over time the CT scans are causing a "hangover" effect almost akin to when I was on Interferon.

Drinking the barium is no problem, the injection of contrast causes the normal heat flush and odd taste/smell. Then as the day progresses I feel worse and worse despite drinking 56+ ounces of water during the afternoon.

Anyone else out there have the same experience?

Carpi Diem

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Anonymous's picture
Replies 2
Last reply 5/22/2012 - 11:39pm
Replies by: noisy77, Janner

Oh no!  I got a total sunburn!  In 1 area, where I must've missed the sunblock, in about a 5 inch area.  It's a patch of FRIED skin.  No moles in that area.  Should I worry?  Schedule more frequent derm visits?  Have history of melanoma stage 0 diagnosis.


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