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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kezzercorn's picture
Replies 2
Last reply 6/8/2015 - 5:13pm

Hello, I'm new to this forum, I'm very glad to have found you.
I was diagnosed ten years ago with stage 2 melanoma and have just received the pathology report for a Spitzoid nevi ,polymorphic melanocyte nests have been found in the papillary epidermis. As there is so much controversy over histological diagnosis of Spitzoid nevi and Spitzoid melanoma I'm concerned about not being offered a wide excision, I'm over fifty which I gather raises the chance of an atypical spitzoid being malignant by 50%.I'm quite worried as my first melanoma wasn't taken seriously initially.
I'd really appreciate any advice.Thankyou.
Kerry

Kerry

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Anonymous's picture
Replies 2
Last reply 6/8/2015 - 5:09pm

Hi!

I just read this article and was interesting to me, specially the last part. It says that SLNB doesn´t bring any survival advantage, neither chemo-, immuno-, or radiotherapy has been shown to provide a survival benefit.

It confused me, I know people who have been under lymph node dissection and adjuvant therapy and today are still NED. I know NED is very subjective, but a NED people could be 'CURE'? I mean why if all melanoma cells were killed by the adjuvant therapy? Or is it always a time bomb?

Here is the link of the article: http://www.practiceupdate.com/content/sentinel-lymph-node-biopsy-in-mela...

 

 

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Hi having had surgery to remove melonoma from my calf and leg the size of the incision was quite large and I am considering grafting the primary site. I will be starting Yervoy in a few days after the graft and have not been able to find any information regarding if the Yervoy has an effect on a graft. If anyone has had this situation I would appreciate the information either way. I look forward to posting the results from my treatment so that others can gain from my experience   

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liberty04281's picture
Replies 5
Last reply 6/8/2015 - 9:04am

After finishing Yervoy treatment I had my second scan. The first scan after I received the last infusion showed a small increase of one nodule in my lung, and there was nothing new. Seven weeks after I had another scan, which was good this time. Almost all of a few nodules that I had in my lung shrank, almost disappeared. My oncologist said it is a very good news, and I am among 10% of the patients who had this good redpond.
It is a good news, and I am very hopeful. The next scan is in two months
Liberty

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arthurjedi007's picture
Replies 6
Last reply 6/8/2015 - 7:35am

They cancelled the radio frequency ablation I was supposed to have Wednesday. It was to burn the mass in my spinal canal at the t10 level before it gets like last year when it almost paralyzed me. Also doing some cement and things. Instead I'm to see a surgeon who wants to remove the mass and that vertebrae. Last year they couldn't do the surgery because the artery supply the tumor also supplies the spinal cord. Also last year they commented they would have to use long rods because of the radiation which now is more like every vertebrae I've had radiation. they said they cancelled because the ablation could not get all the cancer. My doc had told me radiation at best gets 80% so I was already expecting this to be similar.

The recovery from ablation should be at most 3 days. The recovery from regular surgery I'm thinking could be months or never. So for ablation I would still be ready for the trials if I can get in. With regular surgery I could not do any trial until recovered. Currently I'm on pd1 for over a year but every scan has showed some stuff keeps growing and last scan had a new tumor of 5 by 4 cm on kidney.

I had cryo ablation scheduled at mayo and like an idiot when I met the local doc I decided to cancel that. I've since got that rescheduled for the week of the 29th. Cryo is freezing the stuff plus they will do some cement and things.

So I think I know I should get to mayo and get the ablation done rather than doing the regular surgery. But I'm not sure. It would be awesome to be recovered from the regular surgery and not have to worry about thst t10 paralyzing me. But then what about these huge rods that span many vertebrae. Also the cancer seems to grow rapidly sometimes even on pd1 so what shape would I be in.

That area has already been radiated twice but I'm waiting to hear from my radiation doc anyway to see if it can be done again.

So I'm not sure what to do? Any thoughts?

Artie

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/8/2015 - 12:27am
Replies by: casagrayson, Anonymous, 273c

I apologize if I'm overreacting and I also apologize for taking everyone's time incase this is a false alert.

So, I'm an 19 year old boy/guy who lives in scandinavia, Just 10 days ago I noticed a little brown spot on my leg, it sorta looked like a wannabe mole of some sort. It was about a milimeter wide I believe, but over the past 10 days, it has grown and today it started to bleed.

It feels somewhat dry and I can feel that it's not just the skin, it's below the skin aswell, when I squeeze it I can feel that it goes about 1 - 1.5 cm down into my leg, as if it has roots or something. Everytime I squeeze it, it bleeds, I've washed it with alcohol to prevent it from getting infected, it doesnt hurt nor does it itch.

And being the curious type, I couldnt resist but to google this which lead me here, I found some pictures that were alike and some that were not but they all kept highlighting the name "melanoma" which has been branded into my mind now.

I havent been able to sleep all night due to the fear of it being melanoma and the more I google this the more anxious I feel about it, and since it's a weekend and hospitals are closed unless it's an emergency, I can't get any professional feedback other than post images to people who are experienced with this and hope that some of you can guide me. 

Here are two images of what it looks like on my leg. Not sure if its safe for work, it might look a bit nasty... 

 

http://s5.postimg.org/8et7phtqe/20150606_092536.jpg

 

http://s5.postimg.org/bzp38py9y/20150606_092528.jpg

 

I can post more if it's necessary, sorry for the bad quality. I don't really know what else to say, does this look like melanoma? and if it is, what stage could it be at? am I in danger? How long does it take for it progress/evolve? I'm extremly anxious about this,  I'm sorry.

I know most people here have gone through things I wouldnt dare to imagine and I really admire you all for your strength, I thank you all in advance, and I'm really sorry for taking your time.

 

Here are a few notes that could help:

- I'm pretty healthy

- I don't use any chemicals on my body nor do I go outside often, i'm rarely exposed to the sun.

- When I was younger I used to have a skin disorder which made my skin lose its pigment/it turned white, so they had to do UV treatment which cured me.

- Nobody in my family is known to have suffered from cancer or any sort of cancer as far as I know.

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Lyric17's picture
Replies 30
Last reply 6/7/2015 - 3:23pm

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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las630's picture
Replies 10
Last reply 6/7/2015 - 12:58pm

Good afternoon,

I am due to have a wide local excision and sentinel lymph node biopsy done on 6/19.  I asked my surgical oncologist about recovery time, but he said it just depends on once he gets in there and how big the incision ends up being.

 

Can some of you lovely folks share with me how your recovery went?  And how long until you felt ok to go back to work?

 

Thank you and God Bless

Lisa

p.s.   the site is on my left inner leg by my knee where it bends, and the doctor said the lymph node biopsy will likely be the lymph nodes in my left groin.

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Hi everyone

I'm a stage 4 melanoma patient from Denmark having been on the BMS Ipi/Nivo phase 3 trial (checkmate 067) since Jan'14 ... and with amazing results!! I was declared NED already by Aug'14 and have experienced next to no side effects !!! as Im NED and still on the trial my considerations are for how long to stay on the drug (assuming im not even on the trial leg which only receiced Ipi during the first 3 mths:-) ... do any of you have information about or examples of patients having stopped anti-PD1s (Nivolumab or Pembrolizumab), then had a recurrence, started on anti-PD1 again and then seen further disease regression ?

Best regards

Claus

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273c's picture
Replies 3
Last reply 6/7/2015 - 9:12am
Replies by: Bubbles, 273c, mrsaxde

My husband had surgery (lymph node tumor and one between liver and kidney) last week so at the moment he is NED.  We are waiting on pathology and some recovery from the surgery before we head down the path of IPI, ipi/Nivo or maybe just Nivo.   

 

So here is the wildcard, my husband has been itching for months.  He also has several patches of vitiligo.  Itching to the point of a precription antihistamine.  The day after his tumors were removed the itching stopped but by day four after surgery it has started up again although not nearly as bad. 

 

Anyone have itching caused by the melanoma?  Anyone else with pre-immunotherapy itching? What happens when you add in an immunotherapy that then causes itching?  How do you tell if the immunotherapy is working if there are no tumors and you are already have itching/vitiligo? 

 

Thanks,

Kathy

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Anonymous's picture
Anonymous
Replies 0

I have not heard from Robbier for a long time. I would like to know how she is doing.

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Just saw this: http://www.bidnessetc.com/41406-amgen-inc-amgn-tvec-gets-green-signal-fr.... Sounds like another step towards virus therapy.

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Ava Jean's picture
Replies 3
Last reply 6/5/2015 - 5:35pm
Replies by: ldub, Janner, Anonymous

Hello all, 

I'm 34 and was a diagnosed with melanoma in situ just a couple of days ago. The dermatologist told me that it has been completely removed but scheduled me in for a WLE in four weeks' time to be doubly safe. I consider myself very fortunate to have discovered it at such an early stage but am nevertheless shocked - and very frightened - by the diagnosis. I am very anxious by nature and have an 8 month old baby who I am currently looking after while on maternity leave. This unfortunately leaves me a little bit too much time to think and dwell, which has taken me to some very dark places. 

I was hoping someone could offer some words of wisdom/comfort that would hopefully help me put a little perspective on situation and cope a little better on a day-to-day basis.  

 

Thank you, 

Lisa

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G-Samsa's picture
Replies 11
Last reply 6/5/2015 - 1:04pm

I thought this might be interesting for others on this path.  I am nearing the final scheduled trial treatments and have had little difficulty tolerating them.  My most recent scan showed, amid all other stable or reduced tumors, two new less defined spots in my lungs.  The Drs. felt that while new melanoma could not be ruled out, it was more likely a reaction to the drugs.  You may have seen that there was an important paper presented at ASCO on the serious side effects to the lungs from the combo (translates to high mortality)  The course of action was to skip treatment and schedule an interim scan (4weeks). It's hard to for me to skip a treatment since I believe  this has been a life raft---you forget how powerful the drugs are and that the things they set in motion can build, and that you sometimes have to let go and hope you can swim.  Don't know whether anyone else has had this experience, so I thought I'd put it out there to stimulate awareness.

 

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Happyjim's picture
Replies 2
Last reply 6/5/2015 - 12:16pm
Replies by: Happyjim, Janner

So I had a blood blister like lesion on my left buttock (never seen the sun obviously) that came from the site of a rather innocent looking small mole. The lesion got to 4.5mm at its widest, 3mm at the narrowest. To be honest I have no idea how long it was there as it was slightly off the side of my butt. It could have been months but more likely weeks.

Yesterday I had it removed, he excised around it roughly a centimeter and to a depth of a couple of millimeters. He is not even positive it is melanoma but he said a flat out no when I asked him it was nodular, can i trust his confidence without pathology? Would nodular be obvious enough?

thanks for letting me vent. So anxious I can barely function.

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