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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snootyusher's picture
Replies 10
Last reply 1/29/2020 - 9:06am
Replies by: alysoy, Anonymous, snootyusher, Ellenb626, MelMel, Born_in_USSR

I'm a 37 year old male. Red hair, fair skin...have been going for annual skin exams for the past few years. Unfortunately neither my dermatologist or my primary doctor never mentioned the concept/method of a monthly self-screening, which I think will be the cause of a very late-stage melanoma.

Last Tuesday at my annual screening my dermatologist took a biopsy of a new discolored mole on the back of my neck, just slightly to the right. I would never be able to see myself without setting up mirrors or something like that. Again, I never even thought about setting up regular screenings. I was cognizant of whatever I could see myself, or in glancing in a mirror, but never thought I should setup a regular self-review to check out the back of my neck.

I don't have my biopsy results yet, but after reading a ton, I can recognize that at least a few of the lymph nodes on the right side of my neck (closer to the mole site) are definitely swollen and larger than the ones of my left. And of course any passing pain triggers fears of further spread - like a mild in my head that I"m just now feeling has me convinced it's in my brain.

I basically have been unable to sleep, eat, or do anything in the week since the biopsy. I am convinced I'm going to have a very late stage diagnosis and am completely terrified. My parents are still alive and my father is literally 1 month from retirement and I can't believe how terribly this is going to wreck them. I haven't said anything yet to anybody in my life, and I'm kind of spinning out of control. The one and only possible bright spot is that I am in NYC and my employer has a relationship with Memorial Sloan Kettering, so perhaps I can get into MSK fast and receive some sort of treatment that will actually work.

I am just so terribly angry at my dermatologist for not bringing up self-screening as a between-visit practice. This disease is incredibly deadly, and I would've absolutely taken her advice to try and save my own life, and now it's too late.

Sorry for the ramble, but I've been reading this forum a lot the past few days and you seem like an incredible and supportive community.

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Summer S.'s picture
Replies 3
Last reply 1/29/2020 - 8:35am
Replies by: Bubbles, jbronicki

What is going on!

I really donnow how possibly a cancer can be growing so freaking fast sometimes overnight and I am not even exaggerating!

My mom has most her melanoma Mets visible in skin and lymph nodes, ever since targeted therapy stopped working and it has just been crazy growth.

We started a heavy chemo therapy (DTIC+Cesplatin+ vinplastin) last week (cause we already tried immunotherapy and we also need a fast acting agent to control progression)

However, nothing happened, absolutely nothing growth rates are still insanely the same, the lump on her groin lone progressed from a bing pong ball size to an orange size over 3 weeks.

I am super scared, I donnow if that means chemo did not work as well or what has triggered this insanity.

Any thoughts on that?

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TexMelanomex's picture
Replies 5
Last reply 1/29/2020 - 7:44am
Replies by: jbronicki, lkb, TarlieT, sj, Baby_Girl

Hey Warriors! I wanted to share some good news with you all, I had another round of clear scans and ultrasound images as I accelerate into my 2nd year NED. Next scans in May although I was hoping for a longer span between them I am not complaining. Weird how scans now are more anxiety-provoking than when I was deep in the fight, maybe because being out of treatment makes you lose track of time since the battle that was fought and the concern that an ambush might be around the corner. I hope this finds you all fighting and winning. Stay in the fight and warrior on, this enemy can be beaten!

Tex

Tex

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MelanomaMike's picture
Replies 18
Last reply 1/29/2020 - 1:38am

Hi ya'll, here i am!, i hope you all and your family/loved ones are stable at the very least, being stable is a victory, especially when a lot of us have been nothing better then that for a very long time......
Ok, today i did one last biopsy to yes, you guessed it, the Necrotic tumor on my side lol, (6cm now mind you) its to satisfy my next Clinical trial that ill began tomorrow!, a growing necrotic tumor, if that isnt an oxymoron example, then i dont know anything haha, its the easiest accessible tumor to get at, otherwise its a Jacques Cousteau journey into my intestine, lungs and or deep in my butt muscle (CT guided type) whats even funnier (and a long time coming) that mass is GONE this Thursday! Finally, it will be my one much needed battle victory that im not waiting & waiting on a chemical to destroy it, a couple hours in Marks hands & its a goner! My new surgeon Dr. Mark Faires is great, very smart & hes in my corner, look him up...My two meds that ill have flowing thru my veins is OX40 in combo with ISCO. Im very hopeful, GlaxoKlineSmith (GSK) is the manufacturer, they make great stuff that works haha..Well guys, gotta get up early, they want me there at the crack of dawn, trials arnt no joke, ill be there most the day being monitored, poked & prodded, and the blood, so much blood they take from me lol...love ya guys, ill be back after my 2 days of battle...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Andrea67's picture
Replies 18
Last reply 1/28/2020 - 6:44pm

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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gopher38's picture
Replies 28
Last reply 1/28/2020 - 6:39pm

Hello all.

Looking for some advice after my doctor visit yesterday. Had a scan this week and doctor said that there are several spots in the lungs that showed considerable growth since the last scan (boo), so he said that the combo does not seem to be working. Am now going to try targeted therapy, but - as I already knew - he said that that is generally not a long-term thing. He mentioned palliative care, and when I asked him a bit more about that, he said that: "Well, I am still thinking more than a year at this point"

I guess that's better than "less than a year", but made me think that I've really got to think about how I'm spending the time I have. So, looking for advice.

For context, I'm still feeling quite good and am still working full-time. The only people at work that are "in the know" are HR and immediate supervisors. I generally like my work, but nothing more than that. If I had the financial means to quit tomorrow (illness aside), I would. I'm unmarried, so no insurance through a spouse. I'm 56 years old, so too young for Medicare. I think a lot of what I can and can't do depends on insurance, and I feel woefully uninformed here. I had saved some money for retirement, which I guess now has been "freed up", but it's not enough to last long, if the co-insurance bills (I think that's what they are called) are large, given the size of my melanoma-related bills. My last insurance claim was for $163K ... for one bill. Yikes. I imagine that all the plans on ACA have large co-insurance components.

I know that "more than a year"-"less than a year" doesn't mean much, but if time were limited and I had the option, I'd quit and spend time more time at my niece's dance recital or reading a book at Starbucks, and I'd rather start before I get too sick to enjoy it. I don't think I can realistically quit though, because even though someone posted earlier about melonama IV being a "fast track" to disability, I'm pretty sure I would not qualify for that now, because (fortunately? unfortunately?), I can still work.

On the insurance front (which I think is the key to my options), I thought I read in an earlier post that it's possible to get Medicare before 65 in case of grave illness, but I imagine that it would require me to first be on disability, so I've basically got to be sick to the point when I can't drag myself to work. Then I could apply for Medicare also, but then also have to wait for 2 years I believe, at which point it could be moot.

Anyway, I think I'm rambling a bit here, but if anyone has any insights based on the situation described above, I'd love to hear it. It SEEMS to me, like I'm stuck at work for now (which isn't horrible; it's a decent job, but it's just a job), because - although I have enough money to "live" for a few years and pay some for insurance - even a fraction of this bills I'm getting now would quickly dry that up.

Long and short of it is that - before melanoma hit - I thought I'd have maybe 10 or 15 years of good retirement. I can see that's not going to happen now, and I'm trying to find out if I can somehow salvage 6 months or a year before my health goes to hell. Thanks in advance for any insights.

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Anonymous's picture
Anonymous
Replies 0

Hi there,
I know this is a silly question for this board, but does it matter if mole goes to margins if benign? I am annoyed my derm did too small punches and told me as she was doing them. She said she didn't take margins and by then it was too late. She just called and said they're both totally benign - not even mildly atypical but that went to margins. They're on my back. I have history of mm in-situ (20 years ago)
I said to her "oh so should I just keep an eye in case pigment comes back?" She said "you don't even have to"
I am strangely uneasy with it. however I have anxiety so trying to do unnecessary excisions. I will get taken off if pigment returns. my question is do i do anything NOW? : )

She also said we should just do deep shaves from now on.. this isn't my regular derm by the way. I wanted to say "Or your can do appropriate sized punches" lol
It kind of makes me not want to see her. I do see another derm i love next month so can ask him his opinion.

Thanks for any insight!

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sj's picture
Replies 0

Initial thread here: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

First update here: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

Just got the results from the WLE and SNB - No residual cellular blue nevus or melanoma is identified.

Surgery is scheduled for Friday when they will close up the incision on my scalp. It's pretty large, and you can see my skull, so I'm really looking forward to having it closed and not having to look after it anymore. Obviously very excited about the biopsy results as well.

Given that it was melanoma ex blue nevus, recurrence rate is high and I will need to be checked regularly for the next few years. As of 2018 there were only 150 documented cases in literature. Not sure where I fit in, but they're doing a case study on me as well.

Extremely elated obviously, but also cautiously optimistic. All this disease needs is one cell to ruin lives, but for now I can breathe a little easier.

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alysoy's picture
Replies 9
Last reply 1/26/2020 - 10:31pm

I've been following these forums for quite a while, but I've decided to make a new account today. I'm 27, male and have a family history of skin cancer. My dermatologist wanted to biopsy 2 moles from me yesterday that was concerned about. Notably, there was one on my arm that was an "ugly duckling". The scary part about this, is that it is a new mole that grew very very little in the span of 1 year/1-1/2 years, and it's very dark. Definitely stands out from the rest of my moles that are brown. Now i'm extremely anxious over the idea that this ugly duckling simply can't be anything other than Melanoma.

Do ugly ducklings like this usually always end up being Melanoma? Or has anyone experienced a dark mole that was an ugly duckling that came back fine? It started out as a tiny pin dot, and grew double that size but seemed to have stopped growing since that. It was perfectly symmetrical, one solid color (dark dark brown or maybe black), didn't itch or bother me at all. I also have a few darker moles on my leg that have bene there for years (although my derm didn't check my lower body during this check). Is it also possible that if my body can create dark moles, even if they are just a few, that I have the ability to create them somewhere else and them be completely normal? I just don't know what to think. Biopsy results won't come back for another week or 2, and that might be the hardest part.

It seems as if the Ugly Duckling rule is a classic sign for something sinister and bad. The fact that my derm suggested that one go away because it was "an ugly duckling" has me prepping for bad news. I'm just conflicted, because the mole didn't look anything like the ugly pictures you typically see. I'd appreciate any opinions/feedback, i'm just currently trying to control my anxiety in the meantime.

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sks2019's picture
Replies 6
Last reply 1/25/2020 - 10:41am

Hi Peeps.
Can anyone help me to understand the difference between the two trial NKTR and XmAb20717-01 , mom dx in Oct 2018 with vaginal mel, started nivo in Feb2019 and then stable until Aug 2019 . Aug 2019 had liver mets 1 cm , started ipi/nivo in sept 2019 , stopped after 3 doses due to side effects. Now no treatment since Nov 2019 and liver tumors are growing , largest being 7cm . she has already failed ipi/nivo ( we think so ) , Oncologist at UCSF is suggesting to get into phase 1 XmAb20717 . I researched that Standford is running phase 2 trial for NKTR so wondering which one would be a better option.
Anyone here who has failed ipi/nivo and tried NKTR with nivo ? Would she even respond even after failing nivo alone ? FYI she did respond to nivo for the first 6 months.

thanks !

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QuietPoet's picture
Replies 5
Last reply 1/25/2020 - 12:34am
Replies by: Polymath, QuietPoet, sks2019, lkb

Hi Folks!

I'm getting a CT scan tomorrow of the abdomen (first one). I'm doing it without contrast because I'm allergic to a lot of chemicals. I was curious whether that makes any difference in how well mel mets might show up.

I have to say (in response to an earlier post) that I have a FANTASTIC GP at UCSF now. This is the second time I've developed a dermatomyosotis reaction (basically, my skin is saying -- something bad may be going on in your body). The rheumatologist sort of blew it off because my labs didn't weren't positive for ANA or the anitbodies they tested for. About a year later, my melanoma was found. I'm sure I had the melanoma during that time. After the melanoma was removed, the dematomyosotis got better for the most part. Well, it's back -- along with pain in the abdomen and fevers. This GP -- given the history -- wasted no time. She's doing a lot more blood tests and ordered a CT scan immediately. It's so nice to be taken seriously. Our bodies talk to us (or at least mine is rather chatty).

Stage 1A excised, keeping an eye on another; multiple dyslpastic nevi.

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tkoss's picture
Replies 2
Last reply 1/25/2020 - 12:03am
Replies by: QuietPoet, sj

fairly easy read, but it is a complicated subject.

An Elegant Defense: The Extraordinary New Science of the Immune System: A Tale in Four Lives

Matt Richetel

for those unaware you can download from your local library Overdrive Audiobook service. Free.

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Summer S.'s picture
Replies 10
Last reply 1/24/2020 - 10:00am

Hi everybody,

Hope we are all getting healthier and happier everyday!

Stage IV still did not get lucky with either immunotherapy or targeted therapy, we are trying old school chemo for now. Spirits are up though and we are really hoping for the best!

So we have been trying to enroll in clinical trials for a while but without any luck, people basically do not respond to emails and we live in Africa, I almost have given up, if it was not for our two good fellows here Ed and Jackie who halve encouraged me to dig deeper

So, does anybody have a tried method or a direct contact that could help?
We are looking across Europe and US as well

Lemme know!
Love
S.

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