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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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.  

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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.

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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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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

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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

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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.

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Gene_S's picture
Replies 2
Last reply 5/15/2013 - 11:42pm
Replies by: bj63, G-Samsa

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

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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 ?

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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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Charlie S's picture
Replies 7
Last reply 5/15/2013 - 8:04pm
Replies by: Charlie S, Brendan, jcmp, POW, randallgford, Anonymous, JoshF

.....but sometimes they do..

Remember that.

Cheers,

Charlie S

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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

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/15/2013 - 3:14pm
Replies by: Anonymous, Cindy VT

HI-

I visit this site often and post every now and then but I really have respect and admiration for everyone on here. This is the first place I turn to. I'm posting anonomously due to the embarrassing nature. In the last week or two my bowel movements have been unusual. I say that as everything moves normal, there is no blood and I have been frequent. Anyway, I have noticed a groove or indentation in my stool sometimes. It doesn't happen all the time but it sure has me freaked out a bit. I did the obvious internet searches and come up with nothing concise. In most cases it says it can be an inflammed hemorroid or constipation. It has also mentioned poyps. I'm still a few years away from 50 but I know that doesn't remove the risk. So it had me thinking...can this be a metaststic tumor from melanoma that has settled in my colon. I had my scan about 2 months ago and was all clear. I have now been NED for over 2 years. I was never staged as I had no primary leison found...only a small bump under skin and no lymph node involvement. Anyone out there have any explanation or experience with something like this? I know I should probably see a GI or at the very least go see my primary doc but I wanted to reach out here first.

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

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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   

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Linny's picture
Replies 1
Last reply 5/15/2013 - 11:43am
Replies by: BrianP

I've been trying to follow news on this vaccine because I'm in the trial for it. It seems like good news for the vaccine may be forthcoming soon. So let's keep our fingers crossed that the Phase III trial data is as pivotal as they hope it will be. If it is, it'll be great for those with Stage III resectable melanoma who are MAGE-A3 positive. If I remember correclty from the literature I got at the beginning of the trial, about 65% of melanomas test positive for MAGE-A3.


http://oncology.healthace.com/011413/oncology_report_011413_s1.pdf

GlaxoSmithKline: MAGE-A3 (Phase III/NSCLC & Melanoma)

Success Could Open Up a New Platform; 40% Probability of Success with Global Sales Estimate of £1.2B in 2018

GlaxoSmithKline (GSK) could be a beneficiary in an emerging area which utilizes the understanding of cancer as an immune disease. GSK’s candidate is MAGE - A3, an antigen-specific cancer immunotherapy (ASCI), which has shown interesting phase II data. Pivotal phase III data in NSCLC and melanoma are expected in 2013. We see 5%-10% GSK NPV upside on positive data, and minimal downside on negative data given consensus expectations.

We expect pivotal phase III data for MAGE-A3 in mid-2013. This applies to MAGRIT (NSCLC) and DERMA (melanoma) studies, which are both event-driven. As the MAGE-A3 antigen is not expressed in normal cells in the body, the MAGE-A3 ASCI only targets cancer cells. The MAGE-A3 ASCI is highly specific for its antigen, and as a result the product has low potential to harm noncancerous tissues that lack the antigen. The minimal side-effects and good tolerability seen in the clinical trial program of MAGE-A3 (and other cancer immunotherapies) are particularly encouraging when compared to chemotherapy which often has toxic, poison-like side-effects (nausea, vomiting, hair loss, bone marrow depletion, etc.). MAGE-A3 therefore has potential not just as a product but also as a platform, as proving utility in adjuvant NSCLC or melanoma might open the road for GSK to treating perhaps dozens of cancer types with vaccines.

While we acknowledge that cancer vaccines are currently a high-risk area of development, reflected in our 40% modeled probability of success and £1.2bn 2018 global sales estimate, we see several reasons for optimism in the product: (1) phase II studies showed strong trends to MAGE-A3 improvements on survival (DFS, OS); (2) all MAGE-A3 trials so far show impressive safety; (3) phase III studies have much more power to show statistical benefits than the phase II studies; (4) GSK has used gene profiling information to potentially identify responders; and (5) GSK has used more powerful adjuvants (immune boosters) which produce higher-quality results in its phase III trials.

For now, the potential and the risks are high for MAGE-A3 (and the business division that could emerge at GSK if the product works). Consensus does not model MAGE-A3 generally, so we see little scope for downside.

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

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