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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Sherron's picture
Replies 3
Last reply 5/25/2012 - 8:11pm
Replies by: WendyPam

Has anyone heard how his surgery went this morning? 

Take Care,

Sherron,wife to Jim FOREVER

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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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TSchulz's picture
Replies 14
Last reply 5/31/2012 - 11:15pm

Hello all,

I am currently at NIH preparing to receive my billions of TIL cells in just a few hours. While I have a tremendous network of support close to me, I could use all the positive waves to help my cells do their job! I figured who better than fellow warriors to help tip the scales?

So if you have a little extra energy on the plus side today, please send a shout out this direction.

I have such admiration for everything the people on this site go through, have gone through and contribute. May all of our "data" add up to cure soon.

Best, Troy

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deardad's picture
Replies 4
Last reply 5/25/2012 - 7:44pm
Replies by: deardad, Woodlands, Phil S, benp

So Dad had his first round of WBR today.....seemed fairly straight forward but now 4hrs later he is extremely tired and asleep in bed. He said he had slight blurred vision and a headache?

I know these are all possible symptoms, but so soon?

WBR warriors please come forward with some experiences.

Thanks in advance 

Nahmi from Melbourne

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bruski1959's picture
Replies 6
Last reply 5/28/2012 - 11:00pm

Jackie took her 4th Yervoy treatment April 26th, and now after her 1 year battle with the beast, she is now home from a 10 day hospital stay, Jackie's organs are failing. We started Jackie on home hospice care yesterday. That is what Jackie wanted. All her underlying conditions have contributed to her multi-system organ failure. We took a shot to fight the beast. We have been shooting to get to our 20th wedding anniversary on June 12th. Praying for God's will in Jackie's life.

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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

www.melanomaandthecity.blogspot.com "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

 

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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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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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
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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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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