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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Hello everyone,

A major TV news network is doing a story on how the Supreme Court’s decision on health reform will impact with people with serious illnesses.  One provision within health reform is temporary insurance coverage for people with “pre-existing coverage” who have already been denied insurance coverage.  The program is called Pre-Existing Condition Insurance Plan (PCIP). If you have melanoma and obtained insurance coverage thru this program, please contact Lauren Smith who is supporting our communications efforts atLauren@jpa.com.  Please respond by Wednesday evening.

Thank you to everyone within the MPIP community for your help in educating the public about melanoma!

 

Shelby - MRF

 

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Phyllis in IA's picture
Replies 9
Last reply 5/25/2012 - 9:15am

Just wanted to post this info to show that there is hope, even when the prognosis looks pretty grim.  My husband was originally diagnosed in 1985.  The primary was removed by our small-town general surgeon, who said the margins were clear so not to worry.  We went on our merry way, thinking this was no big deal.  Then in November of 1998, 35 nodes were removed from his armpit, and all 35 were positive for melanoma.  A PET scan revealed numerous more enlarged nodes in the supraclavicular region, and altogether he had nearly 60 positive nodes.  He went on to do 4 rounds of biochemo, and had a complete response.  (All 24 nodes removed between rounds 2 and 3 contained black pigment from the melanoma, but no viable cancer cells)  So as of February of this year, we are celebrating 13 years of NED!  We are so very thankful to have been so blessed with this time, which at one point did not seem likely to happen.  At original diagnosis, we had 3 small children, and we can now say we have together seen them graduate from college, have attended their weddings, and welcomed 4 grandchildren.  I just wish that everyone could have the same outcome, as I hate to see all the sadness and suffering, with young lives cut short and losing good people way too soon.  My desire in posting this is that I might give someone early in their journey a ray of hope that things can turn out well, even when the odds are against you. 

Blessings,

Phyllis

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Replies by: Anonymous, john partrick michael murphy

https://www.facebook.com/home.php#!/media/set/?set=a.2481994291537.2113457.1302967109&type=1                             this is his Melanoma Story in pictures. Pray for Steve.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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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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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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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

Hi,

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.

Katherine

 

 

 

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bella001's picture
Replies 5
Last reply 5/24/2012 - 1:08am

Hello!

 

I was dx w/ stage 1 Melanoma is 2004.  I had a WLE and have been NED since.  Last year I learned I have Celiac.  After doing a ton of research on that I'm finding more and more info about a much higher Melanoma rate among Celiacs.  It's relating it to a vitamin D problem.  Anybody else have Celiac or gluten intolerance and also Melanoma?  Just curious if I'm unique or not.

 

Thanks!

 

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

 

News

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
 

 

Videos

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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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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Anonymous's picture
Anonymous
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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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
Teri

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

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rrrule32's picture
Replies 6
Last reply 5/23/2012 - 8:28am

Hello all, my name is Travis and my wife Kaitlyn has Stage 4 melanoma.  She is 23 years old.

I've been reading about a highly effective drug called Dabrafenib.  It has not yet been approved by the FDA.  I think we all need to ban together and get on the FDA to get this drug approved so it can start saving young lives.  

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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. 

Thanks

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Anonymous's picture
Anonymous
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.

Freaking!

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