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.

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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Raeofsonshine's picture
Replies 2
Last reply 3/5/2020 - 3:46am
Replies by: MelMel, Edwin

Hi all!
It's been almost 4 years since diagnosis. I had two reassurances after initial excision. Did ipi/ nivo the first time and when the second in transits appeared we hit them with TVEC. They are gone. recently, for about a month, I have a pain on the top bone of my foot. No reason for it to be there. This is the same foot as the Melanoma in the leg. Has anyone her had spreading to the bone? If so can you speak to it a bit?
Thanks so much!

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Resistancethroughknowledge's picture
Replies 12
Last reply 3/7/2020 - 6:26am

Hello friends,

first of all, i want to apologize for typing and grammar errors, as i am no native speaker. I am living in Germany and work as a teacher (32 years old). I am married with a wonderful wife. I came across this site recently and i have the feeling that the people participating here do a tremendous job in supporting and giving knowledge to each other.

I am looking for support as well. Just a little medical background information: I was diagnosed almost 4 years ago with testicle cancer, but it was caught early and i was able to move on. I have many moles and a light skin, brown hair but a red colored beard. I am now seeking advice how to handle some events that took place a year ago. I would be grateful for any thoughts because at the moment, i feel like falling free.

A year ago, i found a mole on my right leg was kind of itchy. I went to the GP (was too lazy to go to a dermatologist and wait there etc.) and thought he would send me to a surgeon, but he told me he could take care of that. I had moles removed before and new it was no big deal, so i was happy with that. In the time between the first visit at the GP and the day of surgery, at the edge of the mole a bump emerged. It just grew out there within one week (or even less, who knows). It looked in fact like a bubble / blister but when i took a photo of it, i saw that it was indeed a tiny nodule in the exact same color as the edge of the mole. It was fairly small (maybe 2 mm in diameter). On the photo i took, it is even possible to see some really small vessels in it.

Some days later the mole was excised by the GP. During the surgery, he said that he would not send all of the material to the histology as "if its bad, all of it will be bad". I was just overwhelmed by this statement and kind of suppressed any thoughts about the whole thing. The (partial?) biopsy was send to a normal pathology. There, they just cut 2 slides from it and noted that it was a completely benign, perfectly normal nevus. It was not noted if he had achieved clear margins, but this seems unlikely: I moved on and noticed ca. 5 months later that there was coloration coming back at the scar.

I got this removed by a surgeon and it came back from a dermatopathology as a recurrence of a dysplastic nevus (still beningn). At this point, i wanted the first biopsy looked at by a proper dermapathology and had it reviewed again. They looked at it and i was told it was a in fact a dysplastic nevus, but of course they could only look at the 2 slides the previous pathology had cut out of the biopsy.

Since them, i can not get my mind to rest. I see the possibility (am almost convinced) of a missed melanoma and i just don´t know how to comfort myself, as there is no way how i could examine this any further. I went to several dermatologists, but they can not help me. I am just told i "should not be too concerned" but i was not told why i should not be worried at all.

I tried to research everything about misdiagnosed and in consequence "inadequately" removed melanomas (will there be metastasis or will there be local recurrence more likely) but i was not able to find much information, which seems to be logical as maybe there are many unknown cases. As well, i tried to gather information about benign nodules arriving fast at the edge of a dysplastic mole but i was not able to find anything in that direction.
I am now at a point where i don`t see the point in trying to push for further information, as it seems to be a question of fate / chance anyways, as it is often enough in life.

I would be really, really grateful for any advice regarding how to cope with the current situation. What can i do concretely? What should i think to comfort myself?

Thank you very much for reading this. I wish everybody here the best from the bottom of my heard.

Felix

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AMcReader's picture
Replies 12
Last reply 3/22/2020 - 11:44pm

Hello friends,

I always like to take a moment to reflect on the monumental-ness of today, March 1.

On this day, 2 years ago, I moved swiftly from being a Stage 1 Melanoma patient for 24 years straight into stage 4 with a very, very large brain met and a lung met (or maybe 2). I was 16 days postpartum with my first (and I was soon to learn only) child and in that new-mom haze of no sleep, wild hormones and adjusting to this “brand new life” of mine when my very concerned husband took me to the ER for the second time after my brother reminded him that my dad had exhibited similar symptoms when he was diagnosed with stage 4 melanoma 2 years earlier.

One quick MRI was done and then a teary-eyed, new-dad ER doctor held both mine and my husband’s hands and gave us what seemed like the worst possible news...huge brain met, needs to be removed immediately, Stage 4. I had lived almost my whole life with Melanoma and watched my dad pass away from it in less than 2 months only 2 years earlier. We were heartbroken in a way that you can only be when you have a brand new life at home and you have a very, very real fear that you are almost immediately going to be torn from it.

However, somewhere over the course of the next few days several doctors, nurses, social workers and other kind people would hold our hands and help us to understand that this did not necessarily mean the end is imminent. There were options and they were going to work with us to find the best ones. It has been an adventure with lots of ups, downs and in-betweens, but two years later I’m still here, I’m still thriving and, by the grace of all good things, I’ve gotten to that sweet, sweet spot of NED.

Every day when I get two squeeze my wiggly little two-year old daughter, I’m still beyond grateful that I get to be here for every kiss, milestone and memory. It is not the journey I would have chosen, but somehow the very bitter has made the journey even sweeter.

Wishing all of you health and happiness!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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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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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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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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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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Hello everybody!

Just diagnosed MM of Maxillary sinus two days ago.with stage T4aN0M0. Next week to do PET and then operation! Please help me to know what I should consider as regular treatments after operation? Radio therapy & immunotherapy? Any good experience to share? Or anyone has survived in MM over 10 years?

Maggie

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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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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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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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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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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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