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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Gene_S's picture
Replies 3
Last reply 8/10/2012 - 10:16pm
Replies by: Gene_S, RMcLegal
"I Will Survive"   by Donna Summers
 
Change the words to suit your condition... Song # 24 at
 

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

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lrkg1234's picture
Replies 6
Last reply 8/13/2012 - 4:16pm
Replies by: Janner, lrkg1234, Gene_S, teach

I am writing on behalf of my husband, Scott, 54 years old.  Diagnosed with melanoma today. 

It's a tumor in the esophagus, about 6 cm.  We are waiting on the CT scans, just got the pathology report and a GI Scope.

  We have no idea where to seek treatment.  We live in Indianapolis, but are willing to travel about anywhere. 

We are not sure whether we should focus on a good thoracic surgeon or the rareness of the cancer aspect being so rare.  There is not much information out there. 

So happy to find potential help.

Lisa

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When I was researching a cure for my melanoma this would have been a Godsent!

Best wishes to all who are fighting this disease....  Gene

http://www.hindawi.com/search.aspx?startindex=1&field0=9&q0=melanoma

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

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

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Hi: I'm looking for personal accounts of melanoma patients who have had a single brain met removed and who then underwent radiation to minimize odds of recurrence. I had a temporal lobe lesion resected on Sunday; follow-up MRI showed no residual tumor. My choice now is to either go with gamma knife or whole-brain radiation. I'm getting opposing opinion from docs in on my care. My preference is gamma knife--quick and relatively harmless, but want to make sure whole-brain isn't worth the side-effects if it provides significant advantages in reducing recurrence. Let me know if you have experience to speak from or an informed opinion. Thanks.

www.theogler.blogspot.com

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Kellie-T's picture
Replies 2
Last reply 8/9/2012 - 7:14pm
Replies by: lhaley, Dgentz

Just heading home from Moffitt. Six months on Zelboraf and still NED. My hair that was thinning is coming back curly. Side effects are really stable now. Living life and loving it! Keep fighting!

Life is not by accident. Make every minute count.

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Kellie-T's picture
Replies 2
Last reply 8/12/2012 - 10:05am
Replies by: Richard_K, Ali

Just heading home from Moffitt. Six months on Zelboraf and still NED. My hair that was thinning is coming back curly. Side effects are really stable now. Living life and loving it! Keep fighting!

Life is not by accident. Make every minute count.

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Anonymous's picture
Replies 3
Last reply 8/9/2012 - 8:13pm
Replies by: Janner, Anonymous

Hi

I'm 2 months put from WLE and SLNB for a stage 1 b melanoma on upper arm so tensions are still high.

I went in for my first melanoma skin checkup and Derm was rushed. I pointed out 2 very small brown pigmented "things" that didn't even resemble a mole. I am fair skinned and they looked like a freckle- honestly.

Derm reluctant to take them off saying nothing to worry about but I persisted. Here are the results:

Lt arm: pigmented surface lesion 0.3 cm in greatest dimension. Sections show slight elongation of rete ridges and a proliferation of mildly atypical melanocytes arranged mainly as single cells with rare nests along the dermal epidermal junction. The melanocytes possess lightly pigmented cytoplasm. There is a rare melanocyte noted above the basal cell layer. There is fusion of rete ridges and lamellar fibroplasia. In the dermis isa band- like arrangement of benign nevus cells, scattered melanophages and a mild lymphocytic infiltrate. Histology that of a Dysplastic nevus with unusual features. Conservative re excision of scar recommended.

Left breast: pigmented surface lesion 0.3 mm in greatest dimension. This is a thin shave biopsy which shows elongation of rete ridges and a proliferation of mildly atypical melanocytes with lightly pigmented cytoplasm arranged mainly in a lentiginous pattern along the dermal- epidermal junction with rare nests. There is a rare melanocyte noted above basal cell layer. The epidermis is vocally excoriated and rare necrotic keratinocytes are noted within the superficial epidermis. There is a fusion of rete ridges and lamellar fibroplasia. In the dermis is a rare nest of benign nevus cells scattered melanophages and a mild lymphocytic infiltrate. Histology is that of a dynastic nevus which has been excoriated. Although the rare scatter can be explained by local trauma and special site, it would be prudent to re excise scar with conservative margins.

Now I'm off to plastic surgeon ! What should I do moving forward? I have a few of these very " innocent" looking freckles on my back that do not have elevation and look normal? The Derm didn't want to pursue taking even these ones above off for pathology! Should I be worried a d get a other skin check done before my next scheduled in 3 months? And I sits every "freckle" that looks like the ones on breast and arm be taken off?

Thanks friends,
Francesca

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/10/2012 - 8:52pm
Replies by: Janner, Anonymous

Hi, my friend's mom was recently diagnosed with melanoma. She has an appointment with a surgeon on Tuesday. Could anyone help us to understand the path report. The lady is 74 years old and in otherwise good health. It looks to me like it is a fairly thin melanoma but the Clark's level is high so I don't know?? Unfortunately, she had a shave biopsy and I know that's not good. Any help would be appreciated.

Femaile

74 year old

BUTTOCK, RIGHT:
MALIGNANT MELANOMA, BRESLOW DEPTH 1.1 MM (172.5)

NOTE:
Clark Level: IV
Ulceration: Absent
Regression: Absent
Dermal Mitoses: 3 per square mm

The melanoma extends to one peripheral margin and closely approximates the base of the biopsy specimen. A re-excision is warranted. Multiple level sections have been examined.

CLINICAL DIAGNISIS AND HISTORY:
Nevus, R/O Atypia, (partial).

GROSS DESCRIPTION:
Submitted is an irregular, pigmented specimen measuring 1.5 cm; cut into multiple strips. ml-pm/dk

MICROSCPIC DESCRIPTION:
In this trisected shave specimen, there is a broad and assymmectrical melanocytic proliferation. The epidermis is hyperplastic, and solitary and haphazardly nested melanocytes are present along the dermo-epidermal junction and scattered above the junction across the entire breadth of the lesion.  In the dermis, melanocytes are present in sheets and randomly distributed nests failing to display maturation. The melanocytes display enlarged vesicular nuclei with prominent nucleoli  and abundant amounts of lightly pigmented and finely granular cytoplasm. They extend into the deep reticular dermis as small nests and scattered solitary cells, to a depth of 1.1 mm. Three dermal mitoses per square mm are indentified. A Melan-A stain highlights the asymmetry, pagetoid spread, and extension into the reticular dermis.

 

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2012 - 1:44pm
Replies by: Janner

I had a question about PET scans.  I had a very large skin tag (which all my doctors have said looks fine, hasn't changed in years, etc).  I did have a PET scan right after being diagnosed with Melanoma.  If it were Melanoma - it would have shown up in a PET scan right?  Even though it's on the surface of the skin?  Not sure how that works sometimes.  

I know my original surgical onc asked if I wanted it removed and I said to just leave it but I think when I see my derm in a week or so I'm going to just get it removed.  It seems to be a bit irritated lately (I think between the heat and humidity and Zelboraf).  Oh the joys of melanoma!

Thanks!

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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The American Cancer Society is out with its annual report, showing how states are doing in the fight to prevent cancer. The study measured states on seven issues. For the first time, the study ranked states on laws regulating tanning salons. Nationwide, the report finds nearly two thirds of states falling short in the battle against cancer. Only two states, Delaware and Vermont, get high marks.

Read the report: http://cbschicago.files.wordpress.com/2012/08/hdymu-2012-final.pdf 

 

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triciad's picture
Replies 6
Last reply 8/10/2012 - 9:44am

Hi Everyone,

My new oncologist told me to take resveratrol, tumeric, and paba.  When I went to buy the resveratrol, there were so many different kinds, I just came home.  Does anyone have any suggestions as to what kind, brand, and how much?

Thanks for your help and best wishes for good health to all warriors!

Tricia

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EmmaR's picture
Replies 17
Last reply 8/22/2012 - 10:11am

I just stumbled across this website today and I'm not really sure how this all works. I got diagnosed with stage 3a melanoma a few months ago and have undergone two surgeries already, and am about to start interferon in a few days. 

I was wondering what type of stuff I can expect during the initial weeks of treatment? I know everyone is different but if you could share any experiences you have had that would be greatly appreciated.

I'm really scared about the upcoming year, and its nice to have found a place where I can know I'm not alone.

Livin' Lymphless

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Lori C's picture
Replies 4
Last reply 8/9/2012 - 7:12am
Replies by: Lori C, lhaley, Jeff's Mom

I wanted to check in and say that I still read the boards and am keeping all of you in my thoughts.  I have not seen any posts from Charlie in a long time and if you are out there, Charlie, I hope you are doing great.   Am praying for HimynameisKevin and all others who are having struggles with this illness.

I have been trying to keep up with melanoma treatment news because I am doing some writing (for school - I'm in DePaul in Chicago) on the US clinical trial system.  If anyone would like to discuss their experiences with the system of locating and participating in clinical trials with me, please email me!  Brennan07@aol.com

I am also writing about Will.  A week ago, I testified in front of the Illinois General Assembly hearing on abuse and neglect of people with disabilities to tell Will's story.  I have written about it on a blog I created for him.  His melanoma fight is a big part of it, and thought some of you might be interested.  Will was an amazing warrior in all his battles.  I miss him constantly.  The blog is JusticeForWill.wordpress.com

Lori

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sandywebb's picture
Replies 4
Last reply 8/9/2012 - 4:22pm
Replies by: Snickers60, Janner, sandywebb, Anonymous

Well, had my 5yr. scans and I had been NED this whole time. Got results yesterday and they are showing "A slightly irregular noncalcified nodular opacity has developed in the left upper lobe measuring up to 5mm in diameter. The differential diagnosis includes metastatic disease, primary lung neoplasm, or an unusual small focus of rounded pneumonia."  My doc has me scheduled for 3 month re-check scan to check the progress of the nodule to see if there is any change. Needless to say I'm pretty much a basket case right now. Any thoughts on this??

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