MPIP: Melanoma Patients Information Page

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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.

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I had good results with Keytruda for a year...Then, when we saw progression, I also was dealing with internal bleeding and anemia. So Keytruda was stopped. I have been on targeted therapy Braftovi and Mektovi for several months. I saw NED! Very temporarily. Now disease is progressing in both lungs. I have tried all that is available over the 8 years I have been fighting this. My Dr. at Siteman Cancer Center in St. Louis is looking for a clinical trial, but because of side effects I have had he is dubious he can find one. He is considering going back to Keytruda... although bleeding again is a risk. Since it stopped working for me before, is there still a chance it might help me stabilize for awhile? Nervous.

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Andrea67's picture
Replies 7
Last reply 2/27/2020 - 6:15am

I had my first opdivo/yervoy treatment at the end of January. I was supposed to get treatment number 2 last Friday but during my pre treatment blood test my liver numbers were VERY elevated. I'm talking, close to 1200. I was put in the hospital for 5 nights with IV steroids and they had my numbers down to closer to 500. I'm now home and expected to go for another blood test on Friday to see where my numbers are. My oncologist really freaked me out by saying that if my liver numbers are not normal I won't be able to continue with the immunotherapy. I simply just didn't even let that be an option for me and for the first time I'm really getting a sense that maybe this won't work for me. Have any of you gone through something similar and were able to resume treatment? I need a little hope here.

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Anonymous's picture
Replies 6
Last reply 2/27/2020 - 9:10am
Replies by: Anonymous, Nirmita, Tory2, Joannxbuc, Becky, Cindyco

My wife, 42 years old, was diagnosed with mucosal melanoma in the nasal passage 4/2017. We caught it early, she had two surgeries(2nd was to clear margins). Then, to be agressive, as preventive, she had 30 rounds/6weeks IMRT(radiation) then 4(21 day) rounds of chemo(cisplatin & temador). Surgery and radiation was at MD Anderson, chemo was prescribed by MDA, but administered in SC.

Most statics show a 5 year survival at 20-30%,  How long have you been fighting with MM?

RTP

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/27/2020 - 9:29am
Replies by: allybake, casagrayson

Hi,

I noticed this darkened purplish band on my middle toe a couple of days ago and I’ve been obsessed looking at it ever since. I made an appointment with my dermatologist but thought I’d post here and see what you guys think.

From the pictures I’ve seen online, usually it’s a black or brown stripe and I’m worried that because mine is a lot wider than a stripe that it means it’s been there for a while.

Here is a link to the picture:

https://imgur.com/gallery/J2PHPqX

Appreciate any help I can get. Thank you

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MelanomaMike's picture
Replies 1
Last reply 2/27/2020 - 10:08pm
Replies by: lkb

Case Report:
CASE REPORTSURGICAL PATHOLOGY REPORT                         Case: SJH20-00715                              Authorizing Provider:  Mark B Faries, MD: Collected on: 01/30/2020 Ordering Location: PROVIDENCE-SAINT JOHN'S  Health Center. Received:  01/30/2020 1300 hrs. Clinical Information are as follows:
51 year-old male with a history of metastatic melanoma. He has a metastasis on his left lower abdomen (and others in multiple areas of his body) this particular mass is markedly inflamed and is tender.
FINAL DIAGNOSIS:

SKIN AND SUBCUTANEOUS TISSUES FROM LEFT LOWER ABDOMEN, MASS, EXCISION:

MALIGNANT EPITHELIOID S0X10 POSITIVE NEOPLASM, CONSISTENT WITH METASTATIC MELANOMA, 7.0 X 6.5 X 6.4 CM, INVOLVING DEEP SUBCUTIS AND ADHERENT FASCIAL TISSUE, WITH EXTENSIVE NECROSIS (APPROXIMATELY 75%), APPROXIMATELY 10 MITOSES/MM2, AND FOCALLY BRISK TUMOR INFILTRATING LYMPHOCYTES, NARROWLY EXCISED WITH A CLEARANCE OF LESS THAN 1 MM FROM THE INKED SURGICAL MARGIN.
MICROSCOPIC DESCRIPTION:
Sheets of cytologically malignant cells have an epithelioid morphology with abundant pink cytoplasm and contain large, round to irregular nuclei with conspicuous nucleoli. Several mitotic figures are seen. There is extensive necrosis and focally brisk tumor infiltrating lymphocytes are seen. Melanin pigment is not present. By immunohistochemistry, the tumor cells are positive for SOX10, and are negative for MART-1 and HMB45.
The morphologic findings, in conjunction with these immunohistochemical results, are consistent with metastatic melanoma. The melanoma is narrowly free of the inked surgical margins in these planes of section.
AP SPECIAL STUDIES-
IMMUNOHISTOCHEMICAL STAINS:
Block: A1
MART-1- Negative
HMB-45- Negative
SOX10- Strongly and diffusely positive
Interpretation: While HMB45 and MART-1 are more specific markers of melanocytic differentiation, the presence of SOX10 positivity, in conjunction with the morphology of this tumor, supports the diagnosis of metastatic melanoma.
Positive controls demonstrate appropriate reactivity...
GROSS DESCRIPTION:
A. Labeled “left lower abdominal mass”: The specimen consists of a 13.2 x 4.7 cm pink-red erythematous ellipse of skin without orientation and excised to a depth up to 7.5 cm. The skin is stretched over a bulging palpable 7.0 x 6.5 x 6.4 cm encapsulated mass. The specimen is inked as follows: Superficial radial margins–blue; deep–red. Sectioning reveals the mass to have a predominantly pink-yellow necrotic friable cut surface comprising approximately three fourths of the specimen. Only a few red fleshy more viable appearing foci are noted at the periphery. Representative sections including the more viable appearing foci are submitted in A1-6. MK/SK.mk
Microscopic H&E stained sections are prepared and interpreted.

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yoopergirl's picture
Replies 6
Last reply 2/28/2020 - 3:06am

This week I am only taking 5 mg in the morning, and then next week nothing. I am feeling more muscle aches then normal and wondering if this is a side effects of tapering down. We are planning on leaving for 2 weeks after Easter and vacation in the Ozarks and sure don't want any side effects while we are gone, will keep in touch with my Oncologist if I need to. Just wondering how others do on getting off the steriods.

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Nell's picture
Replies 2
Last reply 2/29/2020 - 12:03am
Replies by: STL Mike, Bubbles

I had good results with Keytruda for a year...Then, when we saw progression, I also was dealing with internal bleeding and anemia. So Keytruda was stopped. I have been on targeted therapy Braftovi and Mektovi for several months. I saw NED! Very temporarily. Now disease is progressing in both lungs. I have tried all that is available over the 8 years I have been fighting this. My Dr. at Siteman Cancer Center in St. Louis is looking for a clinical trial, but because of side effects I have had he is dubious he can find one. He is considering going back to Keytruda... although bleeding again is a risk. Since it stopped working for me before, is there still a chance it might help me stabilize for awhile? Nervous.

One voice can make a song; one life can change the world.

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Melanoma- Skin, right neck, shave biopsy
The Breslow thickness is 0.4 mm, with tissue pathologic staging pT1a
An asymmetrical, poorly circumscribed melanocytic proliferation is present. A confluent arrangement of melanocytes is present along the basal layer in which solitary units predominate over the formation of irregular nests. Foci of haphazard intraepithelial dispersion and adnexal extension are present. Melanocytes are pleomorphic and hyperchromatic. The underlying dermis contains a similar population of atypical melanocytes and in addition, demonstrates a lichenoid lymphohistiocytic inflammatory infiltrate with melanophages. The lesion is highlighted with Sox10 and p16 immunohistochemical staining. Additional deeper sections were obtained and reviewed.

Dysplastic compound nevus with mild architectural and cytologic atypia, tissue edges are involved
There are irregular nests and groups of melanocytes along the base of an acanthotic, lentiginous epidermis. There is frequent bridging between adjacent rate. there is mild fibroplasia and a superficial dermal lymphocytic infiltrate. The dermal infiltrate is central and the junctional component extends beyond the dermal portion. There is minimal to mild atypia of the junctional nests.

I did have the WLE on the melanoma and a bigger biopsy for clean margins on the Dysplastic nevi yesterday. 2 week wait now...again...

Plus I have another black spot like the melanoma that they will removing at my 2 month appt. He wanted to wait and see if it changes any before he removes it. It's the size of a ballpoint pen tip.

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Replies by: SOLE

Hello, I am newly diagnosed with acral lentiginous melanoma on the bottom of my foot at the base of the toes. I went in for a consult on WLE and lymph node biopsy and was initially told by the surgical oncologist and plastic surgeon that my toes also have to be amputated. After requesting another consult to get an explanation on the procedures, risks, and probable outcomes for both procedures, they agree to let me choose which option to take. I am now desperately seeking people who have experienced either toe amputations, or a skin graft on the toes and bottom of the foot, and who are willing to share what the pros and cons have been for either procedure.

I am faced with making this decision in the next couple of days and am torn with the enormity of it, especially when so much is based on unknowns.

Thanks so much.

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swissie's picture
Replies 7
Last reply 3/1/2020 - 1:08pm
Replies by: SOLE, SABKLYN, tkoss, sandyd77

Very positive story

My history: 1992 first melanoma (thrick but I don’t know the details)
2008 second melanoma (1.1 mm)
SLN showed something, the doctors were not sure if it was melanoma or a normal naevi, they decided it was normal.

2009 spread to the lymph nodes (with spreading in surrounding fat tissue).
2009, Participated in a double-blind trial with 10 mg/kg ipi, however I was in the placebo group.
So basically, I am an untreated Stage IIIb patient without recurrences.

Since that time I never got any recurrence or new primaries.
I had a couple of scares (I still hate waiting) but all results came back clear.
The last scan was in 2016 (as final part of the trial).

Currently I only have my yearly skin review.
I try to enjoy life as much as I can. I try to be positive and surround myself with positive people. If someone drains my energy, I tend to only meet that person when I really need to. Or I meet a good friend afterwards to give me back my energy.

Stay positive!
Sabine

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ed williams's picture
Replies 2
Last reply 3/1/2020 - 1:13pm
Replies by: SOLE, ed williams

2019 article on CRI home page showing big picture in immunotherapy clinical trial research in various cancers including Melanoma! Good read and shows fast growing field of immunotherapy research. https://www.cancerresearch.org/scientists/immuno-oncology-landscape/pd-1...

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allybake's picture
Replies 2
Last reply 3/1/2020 - 3:01pm
Replies by: allybake, SOLE

Today is Saturday and I feel a sense of relief in that I won't get my biopsy results today. I am full of fear and attempting to keep busy, as I am sure many of you are.

Because toe nail bed melanoma aka subgunal melanoma is so rare in caucasian people or just people in general it's difficult to find any information specific to treatment and progression on this type of melanoma. I have found one reference on here to potential toe nail bed melanoma and that's it!

Back story. I had a malignant mole 40 years ago when I was quite young. In that time they removed a very large section of my upper thigh, but I have been absolutely fine since. Melanoma runs in my family: father, mother, sister and myself. I went for my check ups consistently and mostly did sun protection although at times found it kind of frustrating when golfing and outside gardening etc.

About two weeks ago I had a pedicure before our Caribbean vacation and the light was just right for me to see a brown vertical stripe on my big toe. I told the tech to stop for a second as I wanted to get a better look. Barely remember finishing up the appointment as I knew in my heart of hearts I had a problem. I was fortunate to get in to see my dermatologist the next day and after careful thinking about my paid vacation, I went away for a week and came home to biopsy this past Wed. The pain afterwards lasted maybe 8 hours, but I had a left over RX from a year ago, when I broke three ribs. That helped a lot and pain free, mostly, since.

I can read people and I know what I am looking at. Doctor was talking like I knew what he saying in his medical speak, but I knew. No idea if it's progressed and if we caught it in time.

I understand until biopsy comes back there's not much information to pursue however, If I can look up information now, while I have less anxiety, then it is better. Anxiety is not our friend!

Any feedback would be appreciated.

Allyson E Baker

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mh84's picture
Replies 11
Last reply 3/2/2020 - 1:34pm
Replies by: mh84, SABKLYN, tkoss

I just got the call yesterday that the black spot I was concerned about is indeed melanoma. I think she used the term superficial but the call really was a blur. I go tomorrow to get my WLE done and for a more thorough body check by the Derm this time not the PA like I first had done 2 weeks ago. I am scared as one of the 3 biopsies done also came back precancerous. I also have 2 more black dots that a tony but they look just like the bigger spot on my neck did when it first started out. I am terrified. I only went to the derm because my 2 boys were recommended to get some spots checked and I just happened to be like hey this spot on my neck is black and weird and they told me to make an appointment. I am now scared as I know melanoma is hereditary and I don't want to pass it to my 2 boys.

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STL Mike's picture
Replies 1
Last reply 3/2/2020 - 2:14pm
Replies by: Julie in SoCal

... just not posting a lot. Last scan in Dec had me still NED. Yay. Next scan is in April.

Planning another motorcycle trip for May. No more gas station hot dogs!! Hope to actually do what I plan. Thinking about St Louis ( home in Florissant ) to San Antonio to check out the Alamo. Then to Carlsbad New Mexico to see the caverns then up to south rim of Grand Canyon then go to Salt Lake via the North Rim and up to Salt Lake. From there headed for Yellowstone, and finally Devils Tower (mountain from Close Encounters of 3rd time) and finally Sturgis SD just so I can say I have been there. Then back home. Last trip was just short of 2400 mi this will be around 5000. Of course all is subject to change before and en route.

Was glad to see Melanoma Mike back posting and hope to see him post that they got him all fixed. Well not fixed, fixed, but healthy is what I meant.

I know I don't post much but I check out the posts about 3 - 4 times a week. My thanks you to all for being here and for all the info, and support I see here every time I check.

To everyone: Hang in there!! it gets rough but we can still win.

Mike

Dum vivimus, vivamus

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/4/2020 - 3:40pm

Hi all, wondering if anyone could share what their in transit mets presented like please. Husband has a small pink mark in the skin which feels hard underneath. It moved with the skin. Did anyone else’s in transit present like this? Hit is quite a distance from wle but in between that and arm out nodes. Already stage 3 for 3.5 years. Really appreciate anyone’s thoughts. He is getting it checked next week.

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