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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Anonymous's picture
Anonymous
Replies 5
Last reply 6/13/2013 - 9:04pm
Replies by: JerryfromFauq, Anonymous, washoegal

Does anyone have suggestions for a family member diagnosed with stage iv melanoma and no insurance? Unfortunately, we do not qualify for medicaid, but are far (very very far) from being wealthy.

Thanks!

P.s. I already looked into every type of insurance - can't find anything.

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Anonymous's picture
Replies 3
Last reply 5/22/2013 - 2:07pm
Replies by: Anonymous

Here is the series of events....

-Biopsy  early April

-Full excision end of April (diagnosed stage 1A)

-Progressively, in this last week, brown pigmentation is showing up right through the excision scar....it is not normal scar tissue, it's the same shade as the brown color their originally removed, and its exactly where it was before ........... The

-WLE scheduled for the end of this month

 

 

Is it possible that in the last month, (and since the margins from the last excision were NOT clean) that it is still growing, maybe even at a faster rate now that they've messed with it so much? Im wondering why they didnt go right from the biopsy to the WLE, but they DID remove ALL the visible pigmentation will the full excision, and now I can see it again....

 

Thoughts?

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/18/2013 - 9:13am

I need helping finding a doctor for a family member diagnosed with stage iv melanoma with metastasis pretty much everywhere (brain, lungs, liver, lymph nodes, etc.). I feel like due to the diagnosis and poor prognosis, I don't want to mess around - I'd like to get, at the very least, an opinion from a top doctor in the field of melanoma research. But, I'm having a hard time figuring out who that would be... Any advice? how to research? good experiences from specific doctors? I have a bazillion airlines miles so we can pretty much pack up and go anywhere.

This is scary stuff! Any help would be very much appreciated!!

Thanks!

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A melanoma advocacy group in Canada is conducting a survey of melanoma patients who have taken trametinib.  YOU DO NOT NEED TO LIVE IN CANADA TO PARICIPATE.  

The purpose is gather data to help inform the appropriate government agency about whether this drug should be funded in the Canadian health system.  If you live in Canada and have taken this drug please take a minute to complete this survey:

http://obsurvey.com/S2.aspx?id=0A9B7A11-0458-454D-B1A1-D118FBE8C121

Tim--MRF

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JoWen's picture
Replies 4
Last reply 5/18/2013 - 1:50pm
Replies by: MattF, JoWen, Anonymous

A few years ago Joe began having cluster headaches....it came in cycles, lasting anywhere from weeks to more than a month at a time.  Each one peaked at around 15-20 minutes and than began to subside.  The event lasting about an hour, about the same time each day.  Each time there was a physical change noticeable in the drooping and tearing of the eye.  He said that the pain would literally go to his jaw line.  Seen by PMD, Dentist, Endontist (for a root canal that he didn't even need) Neurologist and Neuro/Opthamologist at Cincinnati Eye Institute and a CT was done (normal)  Numerous meds tried the only thing that seem to work for short time only was Prednisone, however they did not want to continue having him on a steroid.  There was nothing out there for his pain....when it came on.....he paced the floors waiting for it to subside.  We were told that they don't know what causes cluster headaches and for some, it's doing or taking whatever helps the individual.  Oxygen was suggested but he declined at that time.

Within the last two months, he began to have a blurred/foggy vision and an uncomfortable irritation in the eye.  Seen by the eye doctor, he found that there were cataracts, but also evidence of possible past episodes of iritis. There was a thickened area on the sclera which he said was a cholesterol deposit.  The arteries within the eye were engorged, which he said were sometimes typical of people with high blood pressure, however, Joe's BP is constant in the range of 110/60. So he said that there may be more going on, possibly systemic or involving connective tissue.  It was then that Joe told him of his recent diagnosis.  It was felt that with upcoming surgery and pending CT and MRI, we wait until the results of these come in.

So now I am wondering, whether or not his "cluster headaches" have really been that, or connected to the melanoma

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JoshF's picture
Replies 6
Last reply 5/18/2013 - 5:40pm
Replies by: JoshF, Anonymous, Cindy VT, MattF, Kim K

So tomorrow is 2 years NED though I've had my scan a bit over a month ago which my onc said is a big milestone. I'm not a typical case because they never found a primary but thought that I may be a dermal primary. Anyway my onc feels scans would be more harmful and my chances of recurrence is very small. I voiced my concern about cells in bloodstream or lying in wait. I was told this is highly unlikely as with the amount of time between having melanoma and now the 2 years of NED something would've surfaced. His biggest concern for me is being in a higher risk group with already having melanoma. He feels blood work and skin checks would be adequate. He is a melanoma specialist and well respected and constantly says take the monkey off my back and put it on his...easier said than done. Anyone want to share their insight into melanoma cells in blood and my follow up plan.

Josh

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

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Advances in the Systemic Treatment of Metastatic Melanoma
Melinda Yushak, Harriet M. Kluger, Mario Sznol
Within the relatively short time that ipilimumab and vemurafenib have been commercially available, phase II data for the investigational agents nivolumab and MK-3475, for the combination of dabrafenib and trametinib, and for adoptive cell therapy strongly suggest even further improvements in treatment outcomes.

The Article Reviewed:
Treatment for Advanced Melanoma: New Drugs, New Opportunities, New Challenges
The Past, Present, and Future of Melanoma Therapy

To view this email as a web page, click here.

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

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MattF's picture
Replies 14
Last reply 5/18/2013 - 7:13pm

So over 1mm tumor on my cheek and ear lobe right side.

WLE and SLN biopsy done Sept 2012. Neg SNL with good margins. Now only treatment is monitoring. 

I have right side cluster migraines, horner's syndrom, trigeminal neuralgia and aniscoria.

as more than one Doctor and more than one Oncologist has told me "alot about melanoma is unknown. it can really do anything it wants. it can move anywhere and be fast or slow"

So my question is....just because they didn't find it in the lymph nodes they took from my neck doesn't mean it could not be in lymph system either in transit or in another area of nodes "ie right arm pit" etc?

I may not think this pessimisively except that i have been suffering from the other medical conditions I noted...and somedays it all just feels off if you know what I mean.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/17/2013 - 9:53am
Replies by: Tim--MRF

Hello Everyone,

Several weeks ago I noticed on a forearm of my husband a red bump, which I thought was a pimple. I almost forgot about it but today I noticed that it is still there. It is reddish, not painful, raised a little bit, hard, and a size of a pencil eriser. However, when I press on it, the color disapperes completely. My husband never was diagnosed with melanoma (I am Stage 1 patient) but the stories about amelanotic melanoma drive me crazy. I'll make an appontmrent with a dermatologist for him next week. Can melanoma blanch??? I hope it is just an ingrown hair or cystic acne! Any thoughts????

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/16/2013 - 6:11pm
Replies by: Cindy VT, Janner

Hello Everyone,

Several weeks ago I noticed on a forearm of my husband a red bump, which I thought was a pimple. I almost forgot about it but today I noticed that it is still there. It is reddish, not painful, raised a little bit, hard, and a size of a pencil eriser. However, when I press on it, the color disapperes completely. My husband never was diagnosed with melanoma (I am Stage 1 patient) but the stories about amelanotic melanoma drive me crazy. I'll make an appontmrent with a dermatologist for him next week. Can melanoma blanch??? I hope it is just an ingrown hair or cystic acne! Any thoughts????

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Linny's picture
Replies 1
Last reply 5/17/2013 - 6:39pm
Replies by: Cooper

CHICAGO (Reuters) - Melanoma patients treated with two Bristol-Myers Squibb drugs fared much better than those who received either of the medications individually, a new advance for treatments that harness the body's immune system to fight cancer.

Bristol released preliminary data from the early-stage trial on Wednesday, with more detailed results expected to highlight the American Society of Clinical Oncology's annual meeting in Chicago that starts at the end of the month.

Patients in the study received Bristol's immunotherapy Yervoy, which is already on the market, and an experimental treatment called Nivolumab that attacks an immune-system-inhibiting protein called PD-1. The combined treatment shrank tumors in a majority of patients.

"We have never seen this with immunotherapy before," said Dr Jedd Wolchok of New York's Memorial Sloan-Kettering Cancer Center. "The vast majority of patients have a decrease in tumor burden. In melanoma, we're used to seeing the opposite," he said of the notoriously difficult-to-treat form of skin cancer....

http://news.yahoo.com/bristol-melanoma-drug-combo-marks-advance-immunotherapy-222417114.html

Stage III, Unknown Primary; 1 positive node in left axilla

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Houston's picture
Replies 1
Last reply 5/16/2013 - 5:37pm
Replies by: Kim K

Here is what the pathology report says. We are waiting on lymph node biopsy results and just got this. Vascular invasion and tumor infiltrating lymphocytes are new terms to me. The doctors keep telling us not to worry because it was a "thin" melanoma, but now I know it's a Clark level 4 and there is vascular invasion!! Help.

MELANOMA, INVASIVE, SUPERFICIAL SPREADING TYPE
CLARK LEVEL, IV
BRESLOW THICKNESS, .54MM (SEE COMMENT)
RADIAL GEOWTH: PRESENT
VERTICAL GROWTH: PRESENT
MITOTIC FIGURES/MM2, 3
ULCERATION, NOT IDENTIFIED
REGRESSION, NOT IDENTIFIED
VASCULAR INVASION, PRESENT
PERINEURAL INVASION, NOT IDENTIFIED
MICROSCOPIC SATELLITOSIS, NOT IDENTIFIED
TUMOUR-INFILTRATING LYMPHOCYTES, NON-BRISK
ASSOCIATED MELANOCYTIC NEVUS, PRESENT, INTRADERMAL
PREDOMINANT CYTOLOGY, EPITHELIOID AND NEVOID
SURGICAL MARGINS: MELANOMA PRESENT IN SITU AT PERIPHERAL TISSUE EDGE

NOTE-THERE ARE MELANOCYTES LOCATED DEEPER IN THE DERMIS; HOWEVER ARE ASSOCIATED WITH ADNEXAL STRUCTURES AND INTERPRETED AD NEVUS CELLS AND NOT INCLUDED IN THE BRESLOW THICKNESS.

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flvermonter's picture
Replies 2
Last reply 5/16/2013 - 10:20pm
Replies by: flvermonter, Phil S

My husbands biopsy of the spot on his right lung was cancerous. Dr Zager called today to say the thorastic surgeon would call to meet and set the surgery date to remove. Dr Zager WL remove the rest of the lymph nodes on that side.

What should we expect after the surgery? Wl it be radiation and/or immunology? What is the recovery like for him. I will be calling Dr Zager tomorrow with follow up questions, but if you could share your thoughts/ experience??? Thanks mary

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/17/2013 - 7:25pm
Replies by: LibbyinVA, King

Anything new?  don't use facebook.

Insert Generic Inspirational Motto Here

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randallgford's picture
Replies 2
Last reply 5/15/2013 - 9:39pm
Replies by: awillett1991

They talked about Yervoy, then mentioned a combintion of Yervoy and "another drug". Anyone know

what they were talking about? Just curious. They did mention the 10-15% response rate to Yervoy.

Thanks.

Never give up!

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