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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Maybe this has already been discussed in the past, but I thought I would share this information with the group because I had been under the impression that with a melanoma diagnosis that life insurance was out of the question, except at a much higher rate.  One of my friends told me that when she and her husband were getting it, that melanoma was specifically listed as automatically disqualifying you.

Well, my husband and I already had some life insurance but felt we needed to get more.  I told my husband that I didn't want to bother with it for me because I wasn't going to get it (and if so, it would be extremely expensive).  He insisted.  So we applied through The Hartford.  I was a little more encouraged about the possibility of getting accepted, as from what I read in an article I found on the Internet, they were one of the few carriers that gave policies to people with a cancer diagnosis. 

Wow, what a surprise I had when the agent called and advised me that I'm getting the "preferred" rate, the same as my husband (who has perfect health).  Even the agent was a little surprised, but he'd never had any experience with an applicant with a melanoma diagnosis.

He did tell me, though, that if I had had an SNB, that I would have automatically been ruled out from getting insurance, and I know that sometimes people (albeit few) in their panic with the diagnosis, when their Breslow depth doesn't really warrant it, still get one, and unfortunately, these are the kind of things one learns after the fact, but something I would definitely mention to someone to think about.

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Fen's picture
Replies 7
Last reply 9/6/2010 - 11:20pm

 A couple days ago there was a big red warning box at the BB.  Said something about information being compromised and I had to log in again.  I did that but now every time I leave the board and come back I have to log in again.  I click the "keep me logged in" box, but it doesn't help.  Anybody know what I'm doing wrong or what is happening?  

thanks

fen

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Anonymous's picture
Anonymous
Replies 0

Has anyone heard from JanOC. Worried about her husband.

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Cautare dupa tagul Paunesti CANCAN

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renter9's picture
Replies 2
Last reply 9/6/2010 - 10:51pm
Replies by: KatyWI, Charlie S

My friend had a primary Melanoma removed 1 year ago, had node involvment, now had 2 small bb size areas removed near her original site and the surgeon reported them as transient and wants to remove to get clear margins which may invovle a skin flap for a graft.

Thanks, Rita

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Aileen's picture
Replies 4
Last reply 11/19/2011 - 9:37pm
Replies by: Anonymous, SuzannefromCA, Bugandi

A gentleman in California was diagnosed this summer with ocular melanoma.  Is there another O.M. patient who has survived surgery and radiation who could offer some supportive tips, recommendations on coping and getting through the treatments?

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Pekoe's picture
Replies 3
Last reply 9/3/2010 - 4:41pm

Hi, 

I am Stage IIIb (primary on left forearm 8 years ago; left axillary dissection with melanoma in one lymph node in September 2009) and two weeks ago had my 2nd PET/CT scan since I ended radiation therapy in January.  The scan was clear, but my blood work showed a drop in my hemoglobin.  I had been complaining of stomachaches to my oncologist 2 months ago, so he decided to send me for an endoscopy, which I had today.

 

The endoscopy showed erosive gastritis, and a 2 cm submucosal antral nodule.  They are going to send me for an ultrasound to check out the nodule.  But if it was malignant, wouldn't it have lit up in the scan?  It's 2 cm, so not exactly small.  I'm a little confused as to why it didn't show up in the PET/CT scan.   Has anybody else had this happen?  Should I be worried? 

 

Thanks for any replies, 

 

Pekoe (Vera)

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mifis's picture
Replies 3
Last reply 9/4/2010 - 11:33pm
Replies by: mifis, eeick, JenM

Hi there,

I had a melanoma in situ excised in May, a further excision in June and as no clear margins a further excision in July. Still no clear margins; showing atypical melanocytes. Dermatologist and Plastic surgeon say not to worry about it. Pathologist suggested a possible further biopsy near to, but 1 to 2 inches away from excision to see if whole area atypical, then would assume sun damage. Plastic Surgeon and Dermatologist say not to worry. Spoke with Family Doctor and she agrees with me that a second opinion might be helpful, maybe even a re-read of the slides as dermatopathology so subjective. She is particularly worried about the part of the patho report that reads " the extent of disarray and atypia is very concerning". Problem is I am in Central New York and Family Practitioner not sure of who to send me to in area so I am looking for recommendations of experienced specialists in melanoma in the area, which includes Syracuse, Rochester, Albany. Also willing to go to NYC if necessary or even Boston (but not sure if insurance would cover that)

Thanks for your help!

 

Jennifer

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Jackie W's picture
Replies 1
Last reply 9/2/2010 - 10:01pm
Replies by: dian in spokane

The September issue of MD Anderson's Cancerwise magazine is on pediatric melanoma.  It can be accessed on line.

 

Jackie W

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lizyli2000's picture
Replies 2
Last reply 9/2/2010 - 7:31pm
Replies by: Janner, patobs01

Hi there,

I haven't posted on the site for a couple of months now...just to give a quick run down... I was diagnosed in March 2010, with Stage 1 melanoma, 0.32mm, 0 mitosis, on my left forearm. I had my WLE done about two weeks after dianosis and all has been well so far. I have had my slides read by two different pathologists just to be on the safe side and they have both verified the Breslow Depth as well as the clear margins on my WLE. I recently moved to Boston and just went for my 3 month check up at Mass General in the Pigment Leson Center...this is where this question arised for the first time...

The dr. that I saw was very suprised my the margins on my wle inison...he said the margins looked small and didn't fit the guidelines. He stated that all the reports came back as clear margins (again, they were read by 3 different pathologist) however he doesn't feel like the margins are big enough and is suggesting that I get my WLE redone. He stated that it was completely up to me...he would be shocked if there melnoma residue however, it could always happen. He requested to take a look at my post op report to see exactly how much skin was really excised because skin shrinks once it's removed. Well, guess what....it doesn't state the amount taken, just whatever is on the pathology report is what we have to go by, which are 3 x 1 x 0.7cm.

I was finally starting to feel okay and starting to move on from thinking about melanoma all day. I really appreciate any feedback. Thanks so much.

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Rocco's picture
Replies 16
Last reply 9/7/2010 - 5:33pm

My Trial Coordinator remeinded me that I'll be hitting a milestone this Saturday with my CT and MRI scans.  It's week #104 since I started Ipi (MDX-010 Compassionate Use) trial back in Aug 2008.   Could use any and all  prayers, good vibes and thoughts on Saturday for continued clear scans.  Will get results on 9/20 after I come back from a vacation.

Hanging in there and hoping you are all as well -

Rocco, Stage IV (Aug 2005)

Luke 1:37

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Linda J's picture
Replies 4
Last reply 9/2/2010 - 11:13pm
Replies by: BethA in VA, JenM, ValinMtl

I'm really nervous.  So far all I know is that I have a lump under the skin and in the lymph nodes.  I'm also starting radiation tomorrow to take care of the large lump before they remove it - they want to "sterilize" the surrounding tissue so the surgery won't have to be as extensive. 

I'm ready to fight this stupid cancer - I've spent the last two weeks in mental hell waiting for the fight to begin. 

It is mostly the success that others have experienced in their battle that helps me keep going. 

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Rocklove's picture
Replies 7
Last reply 9/3/2010 - 7:29pm
Replies by: Rocklove, King, Carver, amybusby

Hi All,

I have been experienceing a lot of tingling and numbness in my feet & legs from the bio-chemo treatments. I am back to work but am finding my feet & legs are a bit lazy... slower to react than normal. I almost tripped the other day because of the problem.

I called the doc and they subscribed Gabapentin 100mg. I took one last night and most of the tingling went away, but the limbs are still numb.

I am looking for any suggestions that can help get closer to normal. The doc told me it takes about a year for the tingling to go away.

I would appreciate any advice.

Rocky (Stage IV Liver Mets)

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jag's picture
Replies 9
Last reply 9/4/2010 - 3:24am

rigged the hospital schedule to get my post op MRI done1st thing yesterday, I am now NED.  Surgeon at first thought the thing in my head was a tumor because it was black looking (hemosiderin deposits rather than melanoma breakdown  from macrophages) frozen path showed no new tumor cells, so waiting for the gross pathology to see if there are actually any tumor cells.  The doctors and my wife all seem very fascinated and are suggesting it could be my own immune system keeping things in check.   Since it has already taken me 1/2 hour to type just this, it would be nice if it could work a little faster.    Can't use my left side so well, but after craniotomy #3, I couldn't even feel my left leg.   Been down this road before, hopefully will be able to cover my ER shift on Sun.

As for the doctors and nurses here at Sloan, I couldn't be more humbled.   

Insert Generic Inspirational Motto Here

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vickirs's picture
Replies 3
Last reply 9/2/2010 - 9:40pm
Replies by: Rocklove, vickirs

I am on this trial now.  Have had 4 treatments.  Has anybody else been on this trial.  How has it worked for you

melanoma is a word...not a sentence

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