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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shellsbells's picture
Replies 15
Last reply 4/4/2013 - 10:46am
Replies by: natasha, Anonymous, POW, Janner, shellsbells

Ok, so, I got diagnosed with in situ on the left arm. I went in probably within 6 weeks of noticing the first signs of change. The papule was so small (pen or pencil tip size) and black. Dermatologist almost did not send it. Said she thought it was "nothing to worry about". Well, it was in situ. My measurements were pretty small, I cannot remember what.. but the pathology report showed the surrounding skin was "normal" and "cancer free". I got it removed with 0.5mm surrounding area within 2 days of results. I keep reading all these horror stories of it metastisizing.. it scares me. I am an RN so, I think the worst.. I cannot see just statitstical reassurance, and look into the worst case scenario... My dad's brother died of melanoma 8 yrs ago at 43.. but it was melanoma caught late..

I need some reassurance, or success stories, or personal experiences, or tips!.. please help

 

Shelly

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pawillcox's picture
Replies 2
Last reply 4/4/2013 - 9:29am
Replies by: Janner, Anonymous

Hi everyone,

In August 2006 I went to a skin cancer clinic concerned about an abnormal lesion on my right forearm. After being told it was nothing to worry about I did just that.... I left it for over 6 years! I have recently had both my husband and his mother battle cancer, fortunately my husband is now in remission, unfortunatley my mother in law is terminal and at 45 only has a year to live.

I am now quite cancer paranoid and it consumes my thoughts daily.... as a result I went to my GP feeling quite stupid.... he too siad it didnt look like much but was willing to biopsy it to give me peace of mind. A few days later, a saturday morning I received a phone call from the medical centre asking me to come in urgently.... It was pretty obvious what the results were but I went anyway.

My path results were Superficial Spreading type, Breslows 0.3mm (great I know!) Clark Level II. It DOS NOT MENTION ULCERATION AT ALL! The reason why I was worried about the lesion and decided to get it checked out is because it had been scabbing up and weeping for the last year.

I have since seen a plastic surgeon and have has a wider reexcision, path results came back with no further evidence of disease

Plan going forward is to see the plastic surgeon 4 monthly.

My concern is that no lymph nodes have been looked at, no bloods taken, no scans taken. Just the surgeons belief that it could not have spread.

I know my original path results were quite good, I was lucky.... however when my husband had cancer just over a year ago he too was told that his surgery would be all that was needed, that the cancer was contained and that he could go on surveillance for a year. Luckily for him the did a blood test before they sent him home. They called first thing the nect morning and his ldh was through the roof, started 3 months of chemo the next week.

I need some sort of assurance that this is gone, not just the surgeons word because quite frankly I have had enough of being let down by doctors.

I am only 26, have two little girls and dont want to continually have melanoma on my mind.

Any advice?

 

 

 

 

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Gene_S's picture
Replies 5
Last reply 4/3/2013 - 6:35pm
Replies by: Theresa123, Anonymous, Beth, Phil S, Linny

Dissatisfaction with the institution’s president Ronald DePinho 
and his top executives—at a time when the administration is pressing 
the faculty to meet aggressive financial targets that critics say are 
unrealistic.

------------------------------------------

Here is a link to where there are problems.

http://www.cancerletter.com/articles/20130118_1

 

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

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Cielo's picture
Replies 11
Last reply 4/3/2013 - 4:13pm
Replies by: Anonymous, benp, Bubbles, POW, Charlie S, Fen

I think it is politically incorrect of you to post this topic here.  You are NED, so please go somewhere else where you can plant your turmeric seed and add some guayabano along with it. 

For those of us whose hanging on to whatever little hope we have left, who are looking for encouragement and not discouragement,  don't need to read into such topic in this forum. 

My husband is currently admitted at MDAnderson.  After going through a ten-day WBR, his brain has swelled up and as the only caregiver, things became worse for me to handle so I got him admitted.  We have been here for a week and hoping to get out this weekend. We never felt threatened in anyway that treatment was lacking thereof, infact, we are treated like royalties.  Our main Onc here came to talk to me for Plans B and C.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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Clareh's picture
Replies 3
Last reply 4/3/2013 - 2:31pm

I was diagnosed about a 1 1/2 years ago with melanoma.  The melanoma was on my upper abdomen.   I had a wide local excision as well as a sentinal lymph node biopsy.  Lymph nodes were clear. Melanoma measured right at 1mm.  Three months ago my oncologist felt an elarged lymph node under my left armpit.  I had a follow up appt last week and the lymph node was even larger and there was another enlarged lymph node in my right armpit.  I just had a CT scan yesterday . . . now have to wait for my appointment for resutls.  I hate just waiting . . . I am the type of person that likes to gather as much information as possilbe and prepare for what "might" happen (just the way I am) . . . any opinions?

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Has anyone in this trial experienced significant bloodshot eye(s) in this trial? I am in cycle 12 and had an issue last month paused trial meds for 10 days while using a prescribed eye drop. Eye cleared in about 8 days. back on meds for 10 days and bloodshot is back.

I have had amazing results in the trial with very few side effects - minor rash/itching and some wart like growths on my legs (they weren't much to look at anyway).

Wilfred 

If you fight, you may lose, If you don’t fight, you will lose.

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Sharmon, just was reviewing forum and noticed you have not posted in awhile.  Hope Brent is well and you also.

Keep us posted maybe we can help.

Susan...Sister of  Angel Peter...12/6/2012

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Janet Lee's picture
Replies 2
Last reply 4/2/2013 - 7:43pm

I don't recall seeing much posted here about tumors not responding to radiation.

Don had cyberknife on an asymptomatic brain tumor, and a week later it was growing, bleeding, and swelling to the point that he was eventually paralyzed on one side and had speech problems.

Just wondering if anyone else has had this experience.

Also, does this mean the radiation to his pelvic area might have had the same affect (haven't had followup scans yet

Janet

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Anonymous's picture
Replies 3
Last reply 4/2/2013 - 5:21pm
Replies by: Ranisa, mel123

Hello- I have not been diagnosed with cancer, but I have a lot of moles (nearly 200), and I've had several atypical ones removed, including one that caught me off guard and scared me last week. Many are in places that are hard for me to see, let alone keep track of. I want to keep on top of them, but I have tried photography at home and I am just no good at it. My dermatologist was not able to recommend a professional photographer, either. Can anyone recommend a photographer near Baltimore, Maryland who would be willing and able to do mole mapping / total body photography? I only want the photographs for my own use, so I do not necessarily need them to be highly formal or systematic; in fact, some of the more complicated options I have come across on the web look like they involve software that I won't even be able to run on my Mac. I would be happy with high resolution digital pictures with good lighting and clear focus, which I just can't seem to manage on my own. Thanks for your help!

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chalknpens's picture
Replies 8
Last reply 4/1/2013 - 10:33pm
Replies by: chalknpens, Gene_S, Anonymous, Tina D

I am so very sad about my two nieces. My godchild has aggressive breast cancer, and her sister has melanoma and now lymphoma. They both carry the BRCA2 gene, as does my sister, though she does not have cancer. 

I was scheduled to have the genetic testing done this week, but the hospital had to reschedule me due to staff illness, so i'll go in two weeks. I have melanoma, with two primary sites, both stage 1 and removed surgically. I'm worried that if I, too, carry the gene, my own children may be affected as well.

I guess I'm just here to share that worry.

I am not perfect, but I am enough.

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/1/2013 - 9:55pm
Replies by: DonW, Anonymous

I have been praying for an Easter Miiracle for Dian. Years ago, Dian helped me and I will never forget her kindness. She is the most wonderful gal and we need her back on the forum.

I have memory problems now and cannot remember where Cigar Bob post his update news. Can anyone give me that info. 

My thoughts and prayers go out to Dian's family. We love your Dian, please get better fast.

AnnM

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Hello-

I have not been diagnosed with cancer, but I have a lot of moles (nearly 200), and I've had several atypical ones removed, including one that caught me off guard and scared me last week. Many are in places that are hard for me to see, let alone keep track of. I want to keep on top of them, but I've tried photography at home and I'm just no good at it. My dermatologist wasn't able to recommend a professional photographer, either. Can anyone recommend a photographer near Baltimore, Maryland who would be willing and able to do mole mapping / total body photography? I only want the photographs for my own use, so I don't necessarily need them to be highly formal or systematic; in fact, some of the more complicated options I have come across on the web look like they involve software that I won't even be able to run on my Mac. I would be happy with high resolution digital pictures with good lighting and clear focus, which I just can't seem to manage on my own.

Thanks for your help!

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KevinM's picture
Replies 9
Last reply 4/1/2013 - 5:53am

So, I just realized that today is my 7th year anniversary of being NED!! I lurk on this site a bit now....but it was a huge part of helping me through the surgeries and Bio-chemo in the summer of 06. 

I was first diagnosed after finding a lump under my arm. I have an unknown primary. Like most I was pretty scareed when first diagnosed and couldn't think about anything else but melanoma. My youngest son was in high school and oldest a freshman in college. I remember my wife crying one night saying "I only want 5 more years with you". I looked at her and told her to expect to get old with me....she wasn't going to get rid of me that easily!

Since then, I've watched 2 amazing young men grow up, graduate college, get great jobs and find amazing young women. Run 9 marathons, got my motorcycle license and bought the Harley of my dreams. Volunteer with the Melanoma Foundation of New England as often as I can.  Looking forward to celebrating  my 32nd anniversary later this spring! She wanted just 5 more years???? Haha....not gonna get rid of me any time soon!!

To all engaged in the fight right now.......keep fighting and live life to the fullest everyday!!!

Peace and love to you all!!

Kevin

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mbaelaporte's picture
Replies 5
Last reply 3/31/2013 - 11:49pm

I have enjoyed reading of the improvements in health and disease recorded by some of the participants in these trials..Praise be

most recently noticing Melanoma in the City ( I've tried clicking reply to your blog for communicating  but maybe doesn't work ) and the team of Randy & Amanda

Would you please talk to how your participation is being financed - does your insurance company fund trials? Is there a charity or organization that  recognizes  that patients  play a huge part in the development of these medicines that are providing hope & wellness and that we need assistance in the evolution of said medicines.

I touched on this in prior post but some fine print and elaboration has come to pass.  Upon hearing of my rejection from my ins. co. I asked about self pay not wanting to let pass maybe the only thing that will help prolong my life.  There was no real follow up other than yes I could be considered if I chose to go that route.   Without hearing back I had to formally request a study budget from my provider and after a little prodding  I received an email from my provider 15 plus days later called a "breakdown" of my costs:  just south of $ 160,000.00 with an itemization of say ten costs like CTscans  -  $78,932.00 - no designation of how  many or for how long a treatment schedule this deposit was to cover.

I replyed back re: their breakdown;  you call that a breakdown; a breakdown is what I'm having right now contending w / this news.

this email was cc to a number of others & I received  a more compassionate letter the next day from someone directly involved w / the trial and the deposit number had been reduced to a little under one hundred thousand dollars and given a time frame of six months treatment.

I'm looking for a "competitor" trial provider,  organization that supports all the legs of trial costs,  etc...

news on how you are doing it,  your success... all stories most encouraged, thanks,  john 

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