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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cjm22's picture
Replies 9
Last reply 4/17/2018 - 3:03pm

Hi all, I haven't posted before but I'm a very avid reader of this forum. My boyfriend is in his mid-30s and was diagnosed with stage IV melanoma in early February with 3-4 brain metastases (they're not sure about the 4th yet - could just be a blood vessel - 1 was very large but the others are <1 cm) and some in his lungs, too. As far as we know there is no cancer anywhere else, although they're doing another full-body PET scan and MRI next week. He had a craniotomy for the largest brain met, then did WBR + SRS, and now he's about to start the Ipi/Nivo immunotherapy combo next week. So they're treating him pretty aggressively.

Unfortunately the lung mets are progressing rapidly. One tripled in size in just 6 weeks -- they did a CT scan in early February and did another one this past week. :( The largest lung met can't be surgically removed, partly due to its location and because there are other mets in his lungs so the oncologist says it's just not worth doing the surgery (also he's only 7 weeks out of brain surgery, where he had some significant complications afterwards and almost died... thankfully he's doing a lot better brain-wise now although still has significant headaches without painkillers). He started showing lung-related symptoms early last week with coughing, audible wheezing, slight shortness of breath and chest pain, so the doc ordered a CT scan and called later that night with the bad news re: significant growth.

So far the doctors don't think this will change the treatment plan, since he is still able to do most of his daily activities, can climb stairs etc. and we all know immunotherapy has the best chance of long term success. But I'm scared about how quickly the lung metastases are growing and the fact that they're impacting his ability to breathe. :( I'm scared that the cancer will outpace the immunotherapy.

They don't want to put him on BRAF inhibitors because, due to the funding situation here (we're in BC, Canada), that could prevent him from going on immunotherapy afterwards -- the immunotherapy combo program he's on right now might not be funded in the province for more than a year. So they want to get him on immunotherapy ASAP.

Not sure why I'm posting but just looking for reasons to be hopeful :( We moved in together just 2 months before this all started. He's had melanoma twice before -- once in 2010 (mole removed), then a recurrence in lymph nodes (Stage III) in 2014, and now this. 

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chrisholder's picture
Replies 8
Last reply 4/17/2018 - 2:35pm

Hi, all,

I posted about a week ago for the first time, wondering if there were people reading who have mucosal melanoma.  Mine is in the maxillary sinus & was diagnosed in May of this year; started Ipi/Nivo soon after but had to stop after only two infusions due to severe side effects and hospitalization.   Am now on Pembrolizumab (Keytruda) & so far tolerating it.  Would be very eager to hear of others who have MM, what your treatment is, how it's going, how you are managing the side effects, etc.  Unfortunately it's only 1% of all melanomas and so there's far less statistical history and information tha for the other 99%!

I read this and several other patient-based cancer sites/blogs regularly and am contnually moved and uplifted by so many patients' courage, determination and - in the face of this awful disease - humor.  I pray for everyone's peace, comfort and improvement.     Chris

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Anonymous's picture
Replies 18
Last reply 4/17/2018 - 8:15am
Replies by: Anonymous, LynnLuc, Charlie S, Janner, Gene_S, washoegal

Are my odds of another higher than for my siblings since I've already had one?  We have same skin type, same type of moles.  We have skin that tans, doesn't burn easily.  We do freckle and have multiple freckles but not that many moles.  I am a little confused as to how increased my odds are and how carefully I should be watching for a new one after my in situ diagnosis?

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obtu.bt's picture
Replies 4
Last reply 4/17/2018 - 4:40am
Replies by: obtu.bt, Polymath, Bubbles

Hi Folks,
Does anybody experienced electrotherapy before for melanoma? Do you have any information about this treatment?

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Anonymous's picture
Anonymous
Replies 12
Last reply 4/17/2018 - 3:47am
Replies by: Anonymous, bjeans, Janner, Nicole78

Hi Everyone, my name is Nicole , I’ve just been diagnosed with melanoma and that changed everything, I can’t sleep properly :( I have up and downs thinking that I have cancer and that is shocking :( The report from the shave biopsy show a Clark level 1 , Breslow thickens - N/A which is not sure what’s that... peripheral: 2mm, deep 0.5mm. I had the excision and waiting now for the biopsy . The doctor said that he took as much he can and I really hope that the biopsy will come up good. I have another one on my back which is just pyaplastic compund so I will remove that one as well. I’m sure there are people with worse case :( I never thought that I will ever be diagnosed with melanoma as my doctor always said that European people are unlikely to have it so it was a big shock for me the result :( I’m crying a lot , I have two kids and I’m thinking at the worst :( I have moments when I think , it’s ok ,it will be ok but then I’m thinking, it’s cancer , it’s there , anytime can come back , I’m suspicious of each mole on my body now :( it’s not easy...I feel sorry for everyone here having melanoma and I think we just have to hope that the science will discover a cure and we all be safe! 

Nicoleta Tufis

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justscared's picture
Replies 5
Last reply 4/16/2018 - 6:17pm
Replies by: justscared, Janner, Anonymous

Hi all. I’m back again...had a mole removed that came back as moderately atypical a few weeks ago. Been obsessively checking my skin ever since, convinced I’m going to end up with melanoma  

I’ve had an odd mark on the back of my leg since early last year. It’s faintly hard underneath, and almost a bruise color. I don’t know when it showed up, but mentally I want to link it to an incident where I swung my car door shut too fast before my leg was clear. The pointy bottom edge caught my leg and hurt like CRAZY...I think it actually scraped the skin through my jeans and bruised pretty badly. 

But my hypochondria is trying to turn it into something more. It hasn’t changed at all - the way it looks now is pretty much how I remember it always looking, since it showed up. It doesn’t itch, but it’s just a little bit tender when pushed. I’ve just never really had an injury to compare this to. Could it just be scar tissue? Or does this look more sinister?

I’ve freaked myself out so much that now I’m almost convinced that the door hit my leg in a different spot. I go Monday for a full skin check that was already scheduled after my biopsy. 

I even went and hadn’t my bf help to reenact the incident, and the door nails the spot dead on. 

http://tinypic.com/r/zx200n/9

http://tinypic.com/r/15pik3c/9

 

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Roxanne218's picture
Replies 3
Last reply 4/16/2018 - 3:10pm
Replies by: Roxanne218, Anonymous

Hi, I'm recently diagnosed and am having trouble finding an actual melanoma specialist in Arizona. Does anyone else live in this state and know of a good specialist?

Roxanne

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dessie's picture
Replies 1
Last reply 4/16/2018 - 1:44pm
Replies by: Raco

Hey all

Yesterday was my second dose of 240 mg of Opdivo.  It went well but noticed it was over in no time... Came to find our they are now infusing the 240 mg over 30 minutes rather than an hour.  The only reaction  I have had is skin itching  and weird skin outbreaks (as I had and still have with my first infusion) but the fatgue was more this time. Slept 12 hours but going to work this am.  The nurse said that they are ramping up the time of infusions as well.  

Anyone taking the 240 mg dose notice this?  So every 2 weeks a 30 minute infusion of the 240 mg is now my regime rather than an hour.  As long as it works... im ok with it.

Beats the alternative!!

All the best 

Dessie

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tedtell1's picture
Replies 5
Last reply 4/15/2018 - 8:35pm
Replies by: jjk17, gopher38, Hukill, doragsda

Greetings everyone;

Things have been going well recently, clear scans and generally the Nivo has been treating me okay. I am currently receiving the treatment every 2 weeks. I have been given the opportunity to start the once a month regimen. I know other people have started this....does anyone have any information/input on that? I know initially there were some negative reports. My doc has several patients doing it and none of them have had any problems. They have seen a small amount of inflamation in my right lung that causes a persistent cough and doc thinks it is probably from the Nivo, but it is manageable for now. I also have pain in my hips...but again it seems manageable. 

Like to hear from anyone who has experienced/read about the new regimen,

Thanks and keep trucking,

Ted

 

Ted

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JW's picture
Replies 2
Last reply 4/15/2018 - 3:06pm
Replies by: JW, jyc

Hello, 

My husband was diagnosed last week with anorectal melanoma after having surgery to remove what his doctor had thought was a benign polyp removed from his anus. We have our first appointment with an oncologist tomorrow. I've been reading a lot online, and it all looks pretty scary and complicated.  I'm hoping to connect with others who have experience with this rare diagnosis.

Thanks!

JW

JW

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/15/2018 - 9:50am
Replies by: Anonymous, jetdoctor67

Hm. Got a letter from my insurer saying the denial of claim was reversed on appeal. I was aware Castle Biosciences was appealing, but did not expect they would succeed. (Castle was not going to collect from me anyway.) 

”Upon review of the documentation submitted, the request is approved. The DecisionDx-Melanoma signature indeed may be an independent predictor of metastasis risk to assess and design individual preventative measures of metastases for patients such as this patient. The reviewer that made this decision is a Board Certified Medical Doctor in Dermatology. The reimbursement associated with this approval has been processed and you will receive a corrected explanation of benefits.”

(Happily no metastatic occurrence almost 2 years post diagnosis but keeping an eye on things..) 

Thanks to all who share here, and best wishes (and prayers) especially to those fighting active active disease.

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Anonymous's picture
Anonymous
Replies 0

Hi

i am 44 years old. I  very active mole checker and have been doing monthly checks for the last 2 years for my moles. I have dysplastic mole on my back which hasn't changed in the last 2 years but today I was going through my wedding photos and realised that the mole wasn't there in 2009 (age 35) at all. So I've developed this s mole between then and 2014 - it's on photos from then.

 

in that time I had 2 children. I physically was ill when I came across the photo this morning  and I can't look at my children without crying. I'm beside myself. I will try and get in with the dr tomorrow to get a referral. 

 

Anyone with a similar ecperience? This mole hasn't scabbed, itched or bled ever. But it's a good size

im just beside myself 

 

thanks for reading 

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Juanterrazas's picture
Replies 5
Last reply 4/15/2018 - 12:00am
Replies by: SABKLYN, Janner, kcmtnbiker

Hello everyone

A few months ago I developed what I thought was a bruise (I hit hard objects with my feet all the time), under my right foot thumb nail. It has been about 2 to 3 months or maybe even a little more, and the supposed bruise doesn’t go away. Apart from this, a small mole also developed in the sole of that same foot.

I have been to 4 dermatologists and all of them gave me different diagnoses. Two of them diagnosed it as an hematoma and a simple bening mole, one of them as a onychomicosis and a bening mole, and the last one (an older man who seemed to be the most knowledgeable and with the most expertise) advised me to get a biopsy as soon as possible because there is the possibility of a diagnosis of subungual melanoma, although he also agreed about the bening nature of the mole.

After taking lots of pictures, I selected these five which I believe represent the lesion with the clearest quality under different lighting conditions. I can see in the brightest picture some indication of strikes which would indicate melanoma, but in the other pictures the lines are not so apparent and it might be because of the brightness of the flash?

My biopsy is coming soon, and the lab results a few days later, but this situation made me feel really worried, especially the apparent strikes on the lesion.

A big hello and thank you to you all and any help will be greatly appreciated.

Link with pictures

https://drive.google.com/open?id=1dOO-Pv74vMwClVERa-eBsoeHkgzRpkYW

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/14/2018 - 11:11pm
Replies by: jrtufo, cancersnewnormal, guynamedbilly, Anonymous

Hi. Summer 2017 I was diagnosed with a Satage 1A Melanoma. It was pretty random. A tiny scab that wouldn't heal on my right calf. Very small but it came back Melanoma and a month ago another mole came back atypical. Now I have developed a hard immobile pea sized lump under my left ear up by the jawline. Do you tell your melanoma doctor about this or do you call your normal physician. And what are the chances it is even related? Kinda is ruining my day fussing about it. I don't like the "unknown" part of all of this. Like to me stage 1a should mean no worries go get checks but I find myself connecting all sort of weird dots. Is that normal or hypochondria?

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