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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Anonymous
Replies 1
Last reply 5/15/2013 - 11:00pm
Replies by: Cindy VT

Quick overview: diagnosed 2b melanoma...surgery, 1 yr interferon now 1 year since completion of interferon, (2 yrs NED). Stopped interferon last may. Jan comes along and I have this terrible pain in my left upper back, to the point I drive myself to ER at midnight. Doc does chest X-ray, then ct scan. Sent home with diagnosis of pulm embolism in right lung. Started blood thinner xalrato. Md says that's a head scratcher stay on blood thinners for about a year and call me if any problems. ( at this same time, my hemoglobin drops from 11.5 to 8.2 for no reason. I get so weak & fatigued that I request a d iron infusion and iv fluids to pull myself together) So, here it is five months later and my oncologist finds out about PE . He sets up appt to see local hematologist and talk about relation with blood clots and reoccurrence.
My question.....is this all really necessary? I'm 36, active with three kids. I don't have all the time to keep going to appts. I am feeling fine. Had a pet scan done in jan that was clear. Has anyone else dealt with blood clots? We're they related to reoccurrence ?

Login or register to post replies.

MELANOCYTES/MELANOMA

Constitutive Rac Activation Is Not Sufficient to Initiate Melanocyte Neoplasia but Accelerates Malignant Progression

 

Lucy E Dalton, Jivko Kamarashev, Irene Barinaga-Rementeria Ramirez, Gavin White, Angeliki Malliri and Adam Hurlstone

J Invest Dermatol 2013 133: 1572-1581; advance online publication, January 21, 2013; 10.1038/jid.2013.23

Abstract | Full Text | PDF

MELANOCYTES/MELANOMA

Biomarker Utility of Circulating Tumor Cells in Metastatic Cutaneous Melanoma

 

Leila Khoja, Paul Lorigan, Cong Zhou, Matthew Lancashire, Jessica Booth, Jeff Cummings, Raffaele Califano, Glen Clack, Andrew Hughes and Caroline Dive

J Invest Dermatol 2013 133: 1582-1590; advance online publication, December 6, 2012; 10.1038/jid.2012.468

Abstract | Full Text | PDF

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 5/21/2013 - 11:37am
Replies by: Anonymous

Commentary

Journal of Investigative Dermatology (2013) 133, 1460–1462; doi:10.1038/jid.2013.34

Circulating Melanoma Cells as a Predictive Biomarker

Giorgos Karakousis1, Ruifeng Yang2 and Xiaowei Xu2

  1. 1Department of Surgery, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA
  2. 2Department of Pathology and Laboratory Medicine, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA

Correspondence: Xiaowei Xu, Department of Pathology and Laboratory Medicine, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania 19104, USA. E-mail: xug@mail.med.upenn.edu

Abstract

The prognosis of patients with metastatic melanoma has improved significantly with targeted therapeutic agents and immunotherapies. Detection of early melanoma recurrence after treatment will be beneficial to switch patients who fail on one therapy to different modalities. Circulating tumor cells (CTCs) are cancer cells released by a tumor into the peripheral blood. These cells hold potential as prognostic, predictive, and pharmacodynamic biomarkers for treatment. In this issue, Khoja et al. report that melanoma CTCs can be detected using Melcam and high molecular weight melanoma–associated antibody. They found that in 101 stage IV melanoma patients, CTC numbers ranged between 0 and 36/7.5ml blood; 26% of the patients had greater than or equal to2 CTCs at baseline. The CTC number (greater than or equal to2 CTCs) at baseline was significantly prognostic for median overall survival (OS) in univariate and multivariate analysis. Patients receiving treatment where CTC numbers remained greater than or equal to2 CTCs during their treatment had shorter median OS than those who maintained <2 CTCs (7 vs. 10 months, hazard ratio 0.34, 95% confidence interval 0.14–0.81, log-rank test P=0.015). The implications of this work are substantial in counseling patients about their prognosis and in helping to assess responses to systemic therapies.

Login or register to post replies.

JoWen's picture
Replies 8
Last reply 5/17/2013 - 6:59am

Went to see Joe's medical oncologist yesterday.  So at present he is stage IIIA, and interferon vs completion of lynph node dissection.  With Interferon having a low percent success rate and the controversial data out there on the surgery....a decision has been made for 3 month observations, alternating between surgical oncologist, medical oncology and dermatology.  Yesterday they drew a LDH, metabolic panel and a re-evaluation of the tissue samples from surgery for BRAF mutation.  Next week he will have an MRI of the brain and CT with contrast of the Chest, Abdoman/Pelvis, followed with Dermatologist appt. then seeing surgical oncologist the following day....who said you slow down during retirement!

Hoping for the best....always 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

As some of you know, my husband was recently diagnosed with Melanoma. It was .54mm, mitotic rate of 3 and the dermatologist staged it at T1B. We went to MD Anderson last week and he had a wide excision and some lymphnodes removed for biopsy. We are waiting about 10 days on the result of that. In the mean time, we did get a copy of the original pathology and his blood work. The pathology staged him at a Clark's level IV. My questions are about the blood work as all of these are new words to me.

If you can give me some laymans terms on what these may/may not mean and if they are typically abnormal in melanoma, I would really appreciate it.

Thanks in advance.

 

High: MEAN CORPUSCULAR HGB   

Low: NEUTROPHIL PERCENT    

High: EOSINOPHIL PERCENT 

High: LYMPHOCYTE PERCENT   

Login or register to post replies.

Replies by: Anonymous, vivian

Hello everyone,

I'm a 40 year old male with a family. I am considered high-risk (my father had stage i melanoma, I have well over 50 moles including atypical ones, dysplastic moles removed, fair-skinned, lots of exposure when I was young, etc.) I go to a derm every 6 months as it is, but I am very interested in getting mole mapping done. I have become consumed with the possibility/likelihood of melanoma in my life and want to be as pro-active as I possibly can.

 

Does anyone know of a mole mapper in the DC area?

 

Can I go to Cancer Centers (Washington Medical Center for example) for annual or semi-annual checkups, even if I have never had melanoma yet?

 

DO cancer centers offer mole mapping usually?

 

 

Thanks for any input. I greatly appreciate any help anyone can offer.

Login or register to post replies.

gossteach's picture
Replies 12
Last reply 5/16/2013 - 12:06am

Hello all- I've been on the forum for three years, but I'm asking today for a friend. He is 39 years old and had a swollen lymph node in neck. Docs first thought it was lymphoma but biopsy can back melanoma. Unknown primary. MRI of brain came back clean. PET scan showed a 1 cm spot in lung. He is seeing a melanoma specialist that wants to start the interleukin on Monday. Still waiting for BRAF testing to come back. Is there any reason he should not start the IL-2? Would it keep him from getting other treatments if he is BRAF+? What expectations should he have of the treatment? Any advice would be appreciated. He came to me knowing my battle, but fortunately I have not joined the stage four club and can't help him.

Login or register to post replies.

Scottishlady's picture
Replies 7
Last reply 5/16/2013 - 5:33pm

Hi, I am a 38 year old mother of 2, diagnosed with melanoma in situ 4 weeks ago, I had wle and have had the all clear from this, thankfully.
However it's the emotions I am really struggling with, I live in the UK, in Scotland, it's not a sunny place at all, but as soon as the sun shine people are out half naked no sunscreen no protection,
I have had quite a few sunburns myself and admit to using sunbeds maybe about 5 times in my life, as a family we use factor 50 and shade watch

I am struggling with everything at the moment, every little twinge, mark, spot, scratch, ache, pain is cancer in my head, my arm has a 4 inch scar which is healing well but still aches and feels like its ripping,
I know I am lucky but doesn't feel it just now, I was a hospice nurse for 5 years and in my head- cancer = dying,
I have read a lot of your post some have helped others have panicked me but I thank you very much for sharing your experiences it has helped me loads,
Can I ask when do these feelings go? Do they ever?
Struggling with the sunscreen can't get round having to put it on every day, so am just avoiding going out, is it just me?? I feel like a weirdo just now.

I thank you in advance for any advice you can offer me
Regards
Nic

Login or register to post replies.

Scottishlady's picture
Replies 1
Last reply 5/16/2013 - 5:03pm
Replies by: Anonymous

Hi, I am a 38 year old mother of 2, diagnosed with melanoma in situ 4 weeks ago, I had wle and have had the all clear from this, thankfully.
However it's the emotions I am really struggling with, I live in the UK, in Scotland, it's not a sunny place at all, but as soon as the sun shine people are out half naked no sunscreen no protection,
I have had quite a few sunburns myself and admit to using sunbeds maybe about 5 times in my life, as a family we use factor 50 and shade each.

I am struggling with everything at the moment, every little twinge, mark, spot, scratch, ache, pain is cancer in my head, my arm has a 4 inch scar which is healing well but still aches and feels like its ripping,
I know I am lucky but doesn't feel it just now, I was a hospice nurse for 5 years and in my head- cancer = dying,
I have read a lot of your post some have helped others have panicked me but I thank you very much for sharing your experiences it has helped me loads,
Can I ask when do these feelings go? Do they ever?
Struggling with the sunscreen can't get round having to put it on every day, so am just avoiding going out, is it just me?? I feel like a weirdo just now.

I thank you in advance for any advice you can offer me
Regards
Nic

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 5/16/2013 - 5:44pm
Replies by: Cindy VT, Anonymous, Janner, randallgford

In 2006 when I was stage IIIB melanoma, I had several surgeries including in my brain, and I did interferon high dose for a week.  In 2005 I had a hysterectomy.  I was put on estradiaol. 

My Oncologist put me on another drug called Megestrol, or Megace.  I thought It was suppose to take care of hot flashes,

but apparently this drug stops tumors from growing, mostly in Breast Cancer Patients, but I was given it and maybe my tumors are not growing because of this drug?

I think it would be something to ask about.  Maybe it works with melanoma patients too.

Login or register to post replies.

In 2006 when I was stage IIIB melanoma, I had several surgeries including in my brain, and I did interferon high dose for a week.  In 2005 I had a hysterectomy.  I was put on estradiaol. 

My Oncologist put me on another drug called Megestrol, or Megace.  I thought It was suppose to take care of hot flashes,

but apparently this drug stops tumors from growing, mostly in Breast Cancer Patients, but I was given it and maybe my tumors are not growing because of this drug?

I think it would be something to ask about.  Maybe it works with melanoma patients too.

Login or register to post replies.

Anne-Marie's picture
Replies 4
Last reply 5/16/2013 - 5:57pm
Replies by: MattF, Janner, Anne-Marie

I had surgery on March 13th to check my primary lymph node, which was clear, and to perform a segmentectomy on my left breast after a scrape biopsy performed in February came back as Melanoma.  My mole was a dark brown and slightly grey when it was biopsied.  I am having a slight panic attack as I was applying Vitamin E oil to the scar I noticed a new spot,  sort of round, but extremely light brown along the border of the scar on my breast.  It seems to have some texture but almost flat and I would say it is 4mm. I can't say it is right where the original sight was because so much skin was removed before I was left with a verticle scar.  I have spoke with a few people outside the community and they have suggested photographing it every few days and look for changes before I rush it.  I would just rush in, but I am still dealing with financial issues from my surgery.  I am hoping I can wait till my July appointment.  If there are changes, I will rush in.  But if you were me, what would you do?  Has anyone dealt with this? I was diagnosed with stage 1.  Everything came back clear.  Since then I have had two moles come back mildly atypical.  

Login or register to post replies.

Janner's picture
Replies 1
Last reply 5/14/2013 - 10:24pm
Replies by: Hstevens0072

I got permission from Cigar Bob to post an update.  Dian is finally at home after hospitalization and rehab - back and forth.  She is recovering from a stroke she had as a side effect after IL-2.  She also had radiation on a benign tumor in her back that was causing a lot of pain.  She still has some pain issues and lingering effects from the stroke and the computer is not something she's up to dealing with yet.  Hopefully she'll be back on here after a little more time passes and she has a chance to heal.  Wishing her speedy healing!

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 5/14/2013 - 1:13pm
Replies by: Anonymous, Janner, POW

Had the original biopsy, full excision, wide excision with 'margins' is scheduled for the end of this month.....It was on the rim of my ear...that skin is so thin anyway, (and not much left since they keep cutting and stretching!)  is there a chance it could have gotten into my cartilage?.... also, they havent mentioned SLNB... should I ask? It is diagnosed at level 2 stage t1A, but they dont have details like exact thickness, or mitotic rate, which I understand are important factors... My doc is only an ear/nose/throat doc upstairs from my primary physician, and he hasnt refered me elsewhere, even with this upcoming surgery with margins... He insists on doing it... I dont want to question his knowledge, but I am worried that he's either not going to get all of it this time either, OR that it has already spread to nodes in my neck (one of my nodes was swollen, he felt it, said it wasnt swollen ENOUGH to be worried.. I dont know what to do :( :( :(

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 5/14/2013 - 5:51pm
Replies by: Anonymous, Janner, Phil S

I don't get how a person would know to even ask to get tested for a cancer gene?

Login or register to post replies.

Pages