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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1Cbras's picture
Replies 6
Last reply 11/29/2017 - 7:34pm
Replies by: Janner, 1Cbras

So,after two weeks I received my biopsy report. It determined a lesion on my foot to be LENTIGO ATYPIA. The doctor said because the margins are clear no further treatment is required. What exactly is LENTIGO atypia?

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Maureen038's picture
Replies 1
Last reply 11/29/2017 - 11:25am
Replies by: Maureen038

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MSK-IMPACT™ Is the First Tumor-Profiling Multiplex Panel Authorized by the FDA, Setting a New Pathway to Market for Future Oncopanels
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New York, NY,
Wednesday, November 15, 2017

The US Food and Drug Administration (FDA) announced today the authorization of MSK-IMPACT™ (which stands for integrated mutation profiling of actionable cancer targets), a high throughput, targeted-DNA-sequencing panel for somatic mutations. Created by the Department of Pathology at Memorial Sloan Kettering Cancer Center (MSK), MSK-IMPACT is a 468-gene oncopanel intended to detect gene mutations and other critical genetic aberrations in both rare and common cancers. While MSK-IMPACT had previously been approved by the New York State Department of Health as a clinical test, it is now the first tumor-profiling laboratory-developed test (LDT) to receive authorization through the FDA. This decision will help create a new pathway to market for these types of tests.

“This authorization builds on MSK’s rich history of innovation and longstanding commitment to precision medicine and large-scale clinical sequencing,” said José Baselga, MD, PhD, Physician-in-Chief at MSK. “This milestone authorization is a testament to MSK’s expertise in the rapidly expanding field of genome-driven oncology and will set the precedent for future approvals of this type.”

The MSK-IMPACT assay is a qualitative in vitro diagnostic test that uses targeted next-generation sequencing of formalin-fixed, paraffin-embedded tumor tissue matched with normal specimens from patients with solid malignant neoplasms to detect tumor gene alterations in a broad multigene panel. The test is intended to provide information on somatic mutations (point mutations and small insertions and deletions) and microsatellite instability (MSI) for use by qualified healthcare professionals in accordance with professional guidelines. It is not conclusive or prescriptive for labeled use of any specific therapeutic product. MSK-IMPACT is a single-site assay performed in the diagnostic molecular pathology laboratories at MSK. To date, more than 20,000 MSK patients with advanced cancers have had their tumors sequenced through MSK-IMPACT, and the resulting data have helped guide therapy while providing a wealth of new information about the genomic features of both common and rare cancer types.

The FDA reviewed data for MSK-IMPACT through the de novo premarket review pathway, a regulatory pathway for novel, low- to moderate-risk devices that are not substantially equivalent to an already legally marketed device. Following the de novo authorization, the FDA intends to allow future, similar tests to come to the U.S. market as substantial equivalents.

“The authorization of the MSK-IMPACT assay by the FDA represents the culmination of a considerable joint effort by the MSK team and our counterparts at the FDA. We are grateful for the guidance and helpful dialogue provided by the FDA that made this happen,” said Marc Ladanyi, MD, Attending Pathologist and Chief of the Molecular Diagnostics Service at MSK.

“Pathology guides almost every decision point in the cancer treatment process, and MSK-IMPACT has enabled our pathologists to provide a better understanding of the genetic underpinnings of each patient’s illness,” explained David Klimstra, MD, Chair of the Department of Pathology and James Ewing Alumni Chair of Pathology at MSK. “The valuable data obtained through the sequencing can guide treatment choices and, in some cases, identify patients who are candidates for a cancer clinical trial.”

“While clinical trials are vital to developing and improving treatments, only 4 percent of all patients enroll in cancer clinical trials each year. MSK-IMPACT is designed to address this problem,” said MSK-IMPACT test developer Michael Berger, PhD, Associate Director of the Marie-Josée and Henry R. Kravis Center for Molecular Oncology and Assistant Attending Molecular Geneticist in the Department of Pathology at MSK. “MSK-IMPACT has helped doctors accelerate the enrollment of patients into cancer clinical trials, potentially leading to earlier approval of new therapies.”

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ETF111's picture
Replies 45
Last reply 11/28/2017 - 7:12am

 

I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) and belive it or not, my first, but who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two actually two spots or places in my lung but only one had "uptake"). They did an aspiration on my groin node last Thursday and got an oral report that it was melanoma while I was still on the table––. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of nodes in two places  - no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapid weight loss (although, I will admit, since this news last week, I've lost 5 pounds but I hope it is due to stress - quite the appetite supressant ... as well as this eye sty I just got today).

I'm the typical fair skinned, bue eyed countless sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almost exactly 11 years ago) with chemo and radiation and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

 

Anyone else have something like it and is my death as imminent as the studies say?

 

For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

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agila0212's picture
Replies 5
Last reply 11/28/2017 - 5:38am

Hi guys, I hope someone can tell me about Subungual Melanoma and if it can appear overnight.

I was on a vacation and there was a lot of hiking under the sun and it was torture on my foot. The following day I notice a bluish black spot on my big toenail, about 1/4 in size of my toenail. It is not a straight line like I`ve seen on other website and it is also not round in shape. It is shape like a flame, where it is round on the botton and pointing on top. It doestnt hurt or anything. I though at first it was just a paint from the new aqua shoes I bought but I tried cleaning it but it seems to be under the toenail. 

Can a Subungual Melanoma that size appear overnight? I am freaking out here already!!!

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1Cbras's picture
Replies 1
Last reply 11/28/2017 - 12:18am
Replies by: Anonymous

Hi,

I had an excisional biopsy on 11/13. I called the doctors office today and they still don't have the results. Can the timeline between a biopsy and WLE cause further harm. Thanks.

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Dhva's picture
Replies 12
Last reply 11/27/2017 - 9:30pm
Replies by: Mark_DC, Dhva, cancersnewnormal, Anonymous, jennunicorn

Hi all - my loved one just received his 4th Nivo treatment last week. In addition to developing a dark red flushed look during the infusion, he has become increasingly irritable over the past several weeks. Gets very angry over very little, to the point where you have to tiptoe around him. Completely out of character. He is also tired and seems very down and fatalistic. Could this have something to do with the Nivo?  Just worried about these changes. Has anyone else experienced this?

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cheris's picture
Replies 1
Last reply 11/27/2017 - 2:11pm
Replies by: cancersnewnormal

Hope everyone had a blessed Thanksgiving!  I had posted 6 weeks ago that I had been NED for over a year after almost 2 years on Keytruda; but my PET showed a spot although the CT showed nothing.  I just had an MRI which shoed nothing.  I was very relieved, but because of abdominal/intestinal isssues that I;ve been having my oncologist contacted my endo for testing.  Im now waiting to see what he wants to do.  The symptoms resemble IBS exactlt from what I've read, but I had a tumor and 8 in. of my small bowel removed 3 years ago.  The symptoms also resemble that period.

On another note, I am bewildered and concerned at how depressed I became over that spot tht showed on the liver.  I had gone from being NED after Ipi to 3 months later having over a dozen lesions in my liver 2 years ago.  I really don't like feeling so down, but I couldn't seem to help it.  I'm sure many of you have some tips on how to handle your anxiety I just heard on the news that 20% of cancer patients suffer from PSTD.

Cheris

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1Cbras's picture
Replies 2
Last reply 11/27/2017 - 9:09am
Replies by: Treadlightly, Anonymous

What are the treatment options for ALM? Also, I'm looking for recommendations for a melanoma specialist in Northern NJ. Thanks in advance.

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Anonymous's picture
Replies 4
Last reply 11/26/2017 - 12:35pm
Replies by: Janner, Anonymous

- Dear everyone,

 

First, thank you for your help and consideration regarding this post.

 

September 2016, I noticed that one of my mole turned pink / red instead of light brown I think.

My dermatologist did a shave and sent it to the laboratory for a biopsy.

 

REPORT 1 : Shave Biopsy at Dermatology Institute

0.4 cm in greatest dimension

Microscopic Description:

Sections show skin with a domed surface. The overlying epidermis is hyperplastic and shows hypergranulosis and compact hyperkeratosis. Situated at the D-E junction are nests of large spindled and epithelioid melanocytes, some of which are separated from the epidermis by clefts. Kamino (dull pink) bodies are present. The dermal component shows focal maturation and a single deep dermal mitotic figure is seen within intradermal melanocytes.

Diagnosis :

 

Skin, right lower abdomen shave biopsy:

- Atypical Spitz tumor, suspicious for malignant melanoma, involving the peripheral margins, deep margins negative.

Comment : 

The fiding are worrisome for a malignant melanoma. Features in favor of this include poor circumscription, asymmetry, and the presence of rare deep dermal melanocytic mitotic figures. Additional FISH genomic would be helpful. A complete excision is recommended.

--> Okay, I was totally lost at that time, my dermatologist told me that it was very small, but we have to cut it out. 

Report 2: Complete excision, biopsy at UCLA Health 

FINAL DIAGNOSiS : 

SKIN, RIGHT HYPOGASTRIC AREA (EXCISION):

- Residual atypical melanocytic proliferation, excision margins are clear

- Dermal scar and prior biopsy site changes

ADDENDUM 1 :

Recut sections for send-out (requested by the patient) were performed and reviewed. A similar somewhat "epithelioid' proliferation is identified within the region of prior biopsy changes. This may represent atypical epithelioid melanocytes (as originally described) or "epithelioid" histiocytes secondary to the prior biopsy. No malignancy is identified the sections examined. Excisions margins are clear.

Finally, I asked for a second opinion in France, I sent all my slides there.

The final diagnosis is:

Atypical Spitz Tumor (MELTUMP) 

No evidence of malignancy  --> no Spitzoid Melanoma, especially because proliferation and mitotic rate is not high, but the Spitz has some atypia ( cannot translate it into English, it is so hard :)

Well, I am really lost, I really do not understand what I had. Now both of my dermatologist from Los Angeles and France told me that this is over. Just that I have to be Sun Smart to make sure that I will not get a second suspicious mole.

Thanks for your time,

Regards

 

 

 

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sgreenberg's picture
Replies 1
Last reply 11/26/2017 - 10:57am
Replies by: Calynda

Hi,

My wife has 9 brain mets, as of the last MRI. Keytruda and limited-dosage Taf/Mek have stopped progress for now, BUT one of the mets is causing weakness and pain in her left arm – making it hard to function.

Any thoughts as to how to manage the pain aspect? The anti-epileptic she's on (Lacosamide) isn't helping the pain, nor do over-the-counter pain relievers. We've got access to marijuana, but she’s hesitant to use this while at work. Physiotherapy? Massage or acupuncture?

Thanks for any help,

Steven

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landlover's picture
Replies 2
Last reply 11/25/2017 - 10:14pm
Replies by: landlover, jennunicorn

Hi folks-

Quick background- I was diagnosed with Stage 1 back in Nov. 2015 which progressed to stage 4 fall 2016.  My original lesion was on my neck and I had mets to lungs.  I did ipi/nivo for 1 treatment then nivo 5 more treatments and had full resolution of all lung mets.   I did such a short course because of side effects ( thyroiditis, colitis, uveitis) .

I am now on surveillance with scans/ Dr. appointment every 3 months.  So, during the summer I noticed a purple/ brown spot under one of my toenails.  I honestly didn't think much of it.  I also have my toenails painted almost continuously so I haven't looked at them much.  I took the polish off yesterday and still have the same dark area under my nail. 

I go for scans and Dr. appointment  in 2 weeks so I can ask about it soon, but is there really a chance of getting a mel under my nail after being diagnosed with another form?

Thanks for any input.

 Peggy

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Hey warriors, someone may have already posted this or a link to it but I didn't see it so if I'm being redundant just skip.

Melanoma Staging: Evidence-Based Changes in the American Joint Committee on Cancer Eighth Edition Cancer Staging Manual. Gershenwald, Scoyler, Hess, Sondak, Long, Ross, Lazar, Faries, Kirkwood, McArthur, Haydu, Eggermont, Flaherty, Balch, and Thompson. NOV/DEC 2017, CA: A Cancer Journal for Clnicians. 

(I included the full citation in case any of you have docs that authored). We will need Bubbles or someone smarter than I am to decipher some of this but here are the main points.

This will likely be of most use when reading path reports or notes. I suppose there might also be some treatment implications to follow. Although the Eighth addition was published in OCT 2016, it will not be formally adopted in the US until 1 JAN 2018.

Based on 46,000 melanoma patients, from 10 centers worldwide, with stages I-III melanoma, since 1998, the following changes have been established.

1) Tumor thickness measurements to be recorded to the nearest 0.1mm not 0.01mm

2) Definitions of T1a and T1b are revised (T1a, <0.8 mm without ulceration; T1b, 0.8-1.0 mm with or without ulceration or <.08 mm with ulceration) with mitotic rate no longer being a T category criterion.

3) Pathological (but not clinical) stage IA is revised to includeT1b NO MO (formerly pathological stage IB).

4) The N category descriptors "microscopic" and "macroscopic" for regional node metastasis are redifined as "clinically occult" and "clinically apparent".

5) Prognostic stage III groupings are based on N category and T category criteria (i.e., primary tumor thickness and ulceration) are increased from 3 to 4 groupings (stages IIIA-IIID).

6) Definitions of N subcategories are revised, with or without the presence of microsatellites, satellites, or in-transit metastases, now categorized as N1c, N2c, or N3c based on the number of tumor involved regional lymph nodes, if any.

7) Descriptors are added to each M1 subcategories for lactate dehydrogenase (LDH) level (LDH elevation no longer upstages to M1c.

8) A new M1d designation is added for central nervous system mestastasis.

Tex

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/25/2017 - 9:45am
Replies by: Anonymous

Anyone develop  Subungual melanoma after their original Melanoma?

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TexMelanomex's picture
Replies 6
Last reply 11/25/2017 - 12:55am

Hey Warriors!

Sorry for the framented posts, just wanted to log a quick update after round 3 of Pemrbo and PV-10. The flu symptoms hit much faster this time (and I'm hoping that also means they end sooner). Fever and chills the same night, about 6-8 hours after infusion, a little more intense than before, it seemed to take hours to "warm up" even though my skin felt really warm. More fatigue this time around also, I just woke up from a 2 hour nap which is unusual for me (I'm not really a nap person). A few more aches and pains this time so far...but again, nothing unmanageable and certainly nothing that will keep me away from some turkey tomorrow! 

As I said in the original post, I think the results are definitely something to be thankful for. God is good! Each day of life is a gift and Melanoma reminds be to be thankful every single day that I wake up..it also reminds me to fight like hell to rid myself of this disease.

I hope this finds all of you fighting and winning. Stay in the fight!

Tex

Tex

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