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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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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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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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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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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vp sf's picture
Replies 7
Last reply 3/8/2020 - 11:35pm

My husband was diagnosed stage 4 in early 2018. Started on nivo, and was NED by his first 3 month scan, He completed one full year of Nivo post NED, and then with his doctor's concurrence, stopped treatment. Still NED December 2019, but now scans show new lesions in abdomen and lung. My question is about recurrence: Anybody have experience with a situation like this? Or relevant data? He will resume Nivo and we will hope for repeat of great results. But would love to hear from others about their experiences or what they may know or have read on recurrence. Grateful--again--to have this group to turn to.

victoria

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Andrea67's picture
Replies 20
Last reply 3/9/2020 - 12:09am

Hi all! I'm new to this board and sadly, new to my diagnosis of metastatic melanoma. I had a small melanoma on my back in May 2009. It was excised, I had a wide excision and was followed up for 5 years and considered NED. Well, fast forward to late November and the vision in my left eye became blurry. I ended up losing all vision in that eye and after many tests to figure out why I wasn't responding to steroid treatment and plasma exchange therapy, they did a CT scan and found lesions on my liver and lung. I have about 12 small lesions on my liver, one on my lung and of course, optic nerve. I'm about to start Yervoy/Opdivo and am terrified after reading about all of the horrific side effects. If you've done this treatment can you fill me in on your experience please? I'm 52 and have a 14 year old daughter and 16 year old son who desperately need their Mom around as long as possible!

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tkoss's picture
Replies 8
Last reply 3/9/2020 - 10:51am
Replies by: Casitas1, ed williams, tkoss, Sdmotorcop, sandyd77, Anonymous

I would like to think that since many here are getting immune system enhancers it will increase our resistance to the coronavirus.

true? false? comments?

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BillB's picture
Replies 14
Last reply 3/9/2020 - 11:37am

Completed infusion #9 along with CT scans on 1/24. Got good results today that nothing was detected. Since this is the second set of clean scans my doctor suggests stopping the infusions. I have been on Keytruda since August 10, 2017 with a fast moving melanoma that went from the temple area of my head to my lungs in 9 months (2c to 4). We had a long discussion about why I could stop and I happen to agree with him but I informed that from a mental standpoint I wasn’t ready so we agreed to continue. Anyway, a good day and as I read everyone’s posts I wish deeply the same for everyone.  Also, for those interested in side effects, starting with treatment six they alll diminished significantly. Still have some fatigue during the week after the infusion, minor skin sensitivity and some joint pain that comes and goes. Nothing significant and since the middle of December have resumed all normal activities. 

Bill

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Anonymous's picture
Replies 3
Last reply 3/9/2020 - 11:39am
Replies by: HopefulOne, Nett

I have recieved my second infusion of pembro (keytruda)less than a week ago and in the last few days I have experienced tiredness in my body and muscles (brain not tired). My stomach has also had a tight feeling in it and I am only today experiencing tenderness in my abdomen area.
I have no fever or other symptoms. I also had a blood test a week ago and it was good. I have contacted the oncology dept. and they suspect that it is a side effect.
I am still concerned.

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jennifer83's picture
Replies 12
Last reply 3/10/2020 - 11:35am

Hello all,

Just an update. Quick history - stage 4 with lung/liver mets. Four rounds of ipi/nivo and all tumors are shrinking! Started double dose of opdivo 2/21. Very soon after, my vision started to blur. Last week, my vision started to double and got progressively worse. Tuesday, I drove to work but there was no possible way to drive home. Went to ER at MD Anderson Wednesday where I saw an ophthalmologist who ordered another MRI to ensure no cancer growth in the optic nerve area - there wasn't any, whew! But the muscles around my eyes had increased in size 50% since my initial MRI before treatment.
They put me on a high dose steroid for the next seven days (50mg Predisone). Other than that, they recommended I buy fake glasses and scotch tape one side out to help with the double vision - it's helping (yet I keep thinking about funny it is that this woman went to BRAIN DOCTOR SCHOOL and fake glasses with scotch tape is what she prescribes) :) :) :)

Trucking along with some weird side effects! I feel like the steroids have been kicking in and my vision is slightly better. Wishing you all the best in your fights!

Jennifer

Primary 1B in 2014 - WLE and SNB negative. Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

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MarkR's picture
Replies 7
Last reply 3/10/2020 - 6:30pm

Hi All
Just thought I would touch base with an update
Got my first set of scan results on Thursday after starting the Platform trial combining Spartazimulab and Ribociclib with the result being stable disease. There has been a small amount of growth but it still falls within the stable category so quite good news!
On the other hand I spotted a dark mole on my wife’s leg and got her to get it checked out. After biopsy it has come back as Melanoma but thankfully only 0.6mm depth which was at least some good news.
Bit of a challenging week but through it now and just need to keep pressing on
Hope you are all well
Mark

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DT1985's picture
Replies 13
Last reply 3/11/2020 - 8:43am

Hey folks, I’m back again. Quick recap...
Nodular Mel back of calf 1.5mm deep, no ulceration
WLE - clear
SLNB - not clear, involved less than 1mm (only took one node from groin)

Making me now IIIa. (Until I do the PET/MRI scans to see if it’s elsewhere)

The crappy part about my story was I received a phone call from the VA the other day stating that everything was clean. Only to go to my surgery follow up today and be told “actually there was cancer on the SLNB”. So I have already have had quite the up and down ride with this.

Questions...

I am on Long Island in NY and looking to take my case to the best. I have received names like Dr. Weber at NYU, Dr. Postow at MSK, Dr. Kudelka at Stony Brook. Of course I’ve heard many other names from friends/family and what you folks have said, but how do I decide? I live in Stony Brook so that’s convenient for the one but the doc isnt renowned like Weber or Postow. I’ve seen other names on this forum for docs at MSK in Manhattan as well, Chapman? I don’t know who to choose, but I do know the VA is not where I want to fight this. I would like a doctor who won’t treat me like he’s doing me a favor by seeing me that day. And someone who has a team that will stay on top of things and not say “oh sorry, we forgot to tell you blah blah blah” or get my pathology report wrong.

Also...

How do I get my BRAF checked?

Should I get my LDH checked?

Guessing PET scan is next step and MRI. Will they want to take more lymph nodes regardless or only if PET shows something? I’ve read that a dissection is no longer considered worth the risk of lymphedema. And how bad is lymphedema? I fly a lot for work, would that complicate me going back to work?

I’ve seen immunotherapys of Opdivo, Keytruda, and IPI, but also Nivo, Pembro, and Yervoy. Is that just brand names of the same drugs? Does one work better than the other? Most common draw backs to those?

What if it was just the one lymph node that is involved. Is immunotherapy still needed?

And now that I am IIIa, is it almost a certainty that I will have a reoccurrence somewhere else in my body at some point? (granted it hasn’t already metastasized) It seems some of you folks have almost gotten used to the fact that this crap doesn’t go away ever.

Again as always, I am very grateful to all of you and your willingness to share your experiences. I hope one day I can be the book of knowledge for someone that started in my position. Actually I hope no one ever has to experience this....cancer sucks

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