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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fallingstars's picture
Replies 7
Last reply 6/28/2017 - 8:08pm

Test

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slholmdahl's picture
Replies 8
Last reply 6/28/2017 - 6:58pm
Replies by: slholmdahl, Anonymous, miaka618, betsyl

was diagnosed with stage 1a melanoma about one year ago.  It was 0.2MM thick and I had a mitotic rate of zero.   It was on my upper arm. A WLE was performed and all margins were clear.  Also, no other melanoma cells were found even at the original site.  Is the non-finding of any cells in the WLE unusual?

I have consulted with two dermatologists concerning melanoma.

The first states all the usual warnings regarding melanoma, caused by radiation exposure, etc.

Second doctor with more of a research orientation, he is on the faculty at Stanford, believes UVA/UVB has little to do with the development of melanoma.  He says  he believes it is all caused by some genetic weakness or predisposition towards it and not UVA/UVB radiation or sunburns.

I have medium toned skin, blonde hair and green hazel eyes.  I tan and do not burn.

Who do I believe?

It is important to me because I have a genetic skin disease called psoriasis.  The easiest, and most effective way to treat it is using narrow band spectrum UVB light.  Very narrow spectrum and I can control it with an exposure of three minutes once weekly.

One doctor says no more light treatments, the Stanford doctor says no reason I can't continue with home narrow band UVB treatments.  Other treatments are systemic drugs, with many side effects and cause minimal suppression of the immune system.

Any comments are appreciated.

Final issue, can anyone provide studies or statistics on skin checks?  One doctor says every six months, other says once a year, first two years, and subsequently only if you see something new or bothersome.  Second doctor works with a lot more melanoma patients than the first.

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murnaloo's picture
Replies 3
Last reply 6/28/2017 - 6:39pm
Replies by: slholmdahl, Anonymous, Janner

Hi all,

This is my first post here, although I have been reading the posts since my Stage 1B diagnosis in April 2016. No other forum has had such kind, practical and authentic posts, in my opinion.

I was just wondering how those of you diagnosed with stage 1 have carried on with your daily lives. How do you balance your diagnosis with sun safety? How do you keep from living like a vampire? How do you live with the fear of another primary or a recurrence? And, what do you do when you get really down about the diagnosis and how it has changed your life?

I was diagnosed with systemic lupus in 1982, when I was 12, so I hardly went in the sun for years. In my late 20s, I did start going in the sun more, as that no longer seemed to trigger my lupus, but I never layed out by the pool or got heavy burns. I lived in Texas, so avoiding the sun is essentially impossible, especially in the heat of summer when you want as little clothes on as possible. But, I hate hot weather, so I am not inclined to seek out the sun even without the lupus factor.

Since 2010, I have lived in London, where we don't see the sun that often, although when we do it is glorious! I had a mole on my right calf that caught my eye - I don't really recall why, but it was enough to make me go to my GP three times to ask about it. Each time I was reassured, including by one doctor who told me the mole was "cute and heartshaped." While I was visiting my parents in the U.S, I went to the dermo, who took one look at it and said it wasn't fine. I had the WLE within a week -- with no health insurance. Ouch.

Because I have lupus, the one thing I did NOT worry about was melanoma. No family history and I've never been a sun worshipper. Given my experience with the British health system, plus my concern that any day now I'll lose the health insurance I got in the U.S. after my diagnosis (it's through the ACA), I feel like a ticking time bomb, and I can't live like this. The short, grey winter days in London used to make me blue, but now my mood dips when the sun comes out.

I thought as time went on I'd get better, but I am getting more scared and anxious. I know we are all different people, but I wondered if you have any tips for dealing. This Saturday is an annual boat trip down the Thames with friends. It used to be the highlight of my summer, but now I'm hoping it rains and the trip gets canceled. I'll be coated in sunscreen, with clothes covering almost every inch, but the joy of the day is gone. This is just no way to go through life.

Thoughts?

 

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Bubbles's picture
Replies 4
Last reply 6/28/2017 - 2:18pm
Replies by: Bubbles, Anonymous, jahendry12, UBContributor

We're here!  The end of my ASCO review for this year.  I thought it fitting, and important, to end on this note:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-friends-in-need-are-friends.html

I wish you all my best.  Until next year....'Thank God and greyhound she's gone!!!!! ' c

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Jamie1960's picture
Replies 3
Last reply 6/28/2017 - 1:16pm
Replies by: Jamie1960, Ed Williams

Any recent stage 2 (or 3) patients with current experience regarding depigmentation / vitiligo around atypical nevus ?

Have had a 1/4" pink nodule / bump "puff up" in a depigmented area. Bump sloughed a layer and has started to recede. Similar pattern as a prior melanoma with ulceration / regression (came, went, came back). Biopsy scheduled for this coming week.

I've read some encouraging articles that depigmentation may be favorable from an immuno response perspective, but want to get on this in the event of regression and reduced ability to correctly gauge depth (2015 experience).

Thank you for any personal experiences regarding depigmentation prior (important) to beginning immunotherapy.

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RitysMom's picture
Replies 10
Last reply 6/28/2017 - 11:12am

My last post was on 6/8 when we found out Kristine has mets in her spine. The last couple weeks have seemed to fly by while also going in slow motion...it's a very odd feeling. I flew out to her in AL on 6/9, by then she had had a high dose of radiation on one of the tumors in her spine, but still had no functionality from the waist down. Her husband and I spent some time with a home health nurse and learned how to care for her, we then decided to continue with our travel plans.

I had contacted a few drs in the Los Angeles area and Dr. Chang from USC and Dr. Hamid from The Angeles Clinic both wanted to see her. Dr. Hamid was in contact with her dr at MDA, Dr. Tawbi, and said they were both in agreement to get her started on ipi/nivo before we went to Hawaii even tho she's still on 4mg/day of dex.

We flew from Pensacola to LAX on 6/13 and it was a nightmare, Kristine was bruised by the end of the trip after all the transfers by inexperienced employees. We also had a Southwest Airlines pilot who told us that 'life isn't fair' when I complained about yet another indignity that my sweet girl had to endure. I almost got kicked off the plane when I responded to him. Really? We don't know by now that life isn't fair??

After arriving at LAX, we made our way to The Angeles Clinic for an appt with Dr. Hamid. He scheduled her to have her first ipi/nivo treatment that Friday, 6/16. We decided to cancel with Dr. Chang due to how exhausted she was. Dr. Hamid also did a brain MRI and CT of the body. The brain still had numerous brain mets, but she only finished WBRT in 5/24, so we still may see a response to that. Her body had one lesion on the lungs.

Her treatment on 6/16 went smoothly. We flew to Hawaii on 6/20. She has had no improvement in mobility and has deteriorated in some ways. During transfers from wheelchair to car or bed, she sometimes loses consciousness if her head goes back too far. It usually only lasts a few seconds, but yesterday was a long one. My son-in-law called Dr. Hamid and he upped her steroid to 8mg/day. She also seems extremely fatigued, like falling asleep as she's sitting up. And she was vomiting yesterday.

My fear right now is that we're at the end. I'm worried she won't be able to get the 2nd dose of ipi/nivo due to the increase of steroids. 

She's been spending her days here in Hawaii sitting on the back patio watching the waves and embroidering when she's not dozing. She hasn't felt up to going anywhere after the first day. I want to do whatever I can to make this trip enjoyable and memorable for her and the whole family. 

I don't know if I have questions or just need to hear other experiences. I'm just feeling lost.

Cindy 

Mom of the beautiful Kristine

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Anonymous's picture
Anonymous
Replies 8
Last reply 6/28/2017 - 11:00am

My husband was recently diagnosed with stage IV melanoma which has spread to his Lymph Nodes.  We are still waiting for some additional test which will determine which type of treatment will be suggested.  So far we like the Oncologist just fine and he has a good reputation as a Oncologist/Hematologist.  I'm not sure how much Melanoma he has delt with, he seems knowledgable, but he's not a Melanoma specialists.  How important is that? 

What about getting a second opinion (like on the treatment for example)?  I'm not sure what would be involved since we've already seen him several times and I don't want to waste time before getting started, also not sure if that would be covered by our insurance.  Like I said, I have no reason to believe my husbands Dr. doesn't know what he's doing, it's just with something this serious we want to make the best decision. 

Interested in feedback by others who have been through the beginning steps. 

Thanks so much!

 

 

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CindyJ's picture
Replies 5
Last reply 6/27/2017 - 9:29pm

I've read in this forum that a tumor can become bigger before shrinking due to immune system cells attacking during the early stages of immunotheraphy. I'm picturing it as one big blob.

I'm wondering if anyone has heard from a doctor if that too could explain a crazy SUV number of 17 on an approximate 4cm tumor? ...that there's so many cells involved (good and bad) and the battle is why it's so high?

Or am I just hopeful?

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/27/2017 - 3:12pm
Replies by: Kcawood, Anonymous, Janner

Hi, I'm new here, but not new to Melanoma, I was diagnosed with Malignant Melanoma 17 years ago, I have also had Basal Cell Carcinoma, both surgically removed. So here's my thing. I recently had an MRI due to headaches, tingling, numbness and pain in my finger tips and toes, loss of balance, trouble swallowing, slurred speech and phantom smells, I was then refered to a neurologist who sent me for another MRI, to see a speech pathologist and to have my eyes checked by an opthalmologist (I have Adies Tonic Pupil, in other words my pupils don't work). Anyway I have to wait another month to go back for a follow up appointment with the neurologist, so I figured I would ask a few questions here. 

 

I had melanoma on my stomach, I now see a new mole just above my scar and have noticed a feeling of fullness around the area and into my groin, my glands in my groin feel swollen too, Can anyone tell me if melanoma hurts, if you can feel it in the skin, as in do you feel anything with melanoma other than in the advanced stages? I don't feel any lumps in my skin, I just feel a bit of pulling and fullness, does that make sense?

 

I appreciate any feedback on this whatsoever, especially from people who were diagnosed many years ago and then it has returned later. 

 

Wishing you all a wonderful day!

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MrG's picture
Replies 0

Hi All,

At the end of February I (M, 39) went for my first full body dermatology appointment and the doctor took off a mole which was then sent for a biopsy and came back severely atypical.  They removed more of my skin until they found clear margins.  During my monthly self check, my wife and I both thought we noticed a change in another mole. I went back this week and he looked at the identified mole on my lower back, upper butt and removed it.  He felt it looked fine symmetrically but felt there were two different colors in the mole. 

Given that I got a full body scan in February, is this likely something he missed during the intitial appointment or is it possible to a mole change that quickly?  Is there usually a correlation of once one atypical mole is found more will more than likely grow/change?

I had my wife look at the location he removed and it appears that there is a small dot or pigment remaining. Is this normal for a scrap examination or problematic that it is deeper than anticipatied?  

Thanks in advance!

 

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/27/2017 - 11:44am

29-year old healthy male. Went to Dermatologist on 6/22/2017 with a lifelong mole (literally on my right thigh my entire life) that had crusted/scabbed over and bled a little bit (I may have been scratching it as I was out in the woods with mosquitoes the day before I noticed the blood). He said it is "more likely than not" melanoma, but would not counsel on what type or depth. Did a punch biopsy and sent to lab. Awaiting Results. Are doctors ever wrong after dermatascope or are they pretty adept at diagnosis w/o biopsy?

 

A few things: there was hair growing in the mole. Is this a good sign? Also, I have a nasty bruise on the inner thigh semi-close to the mole site. Is this dangerous? Thank you for your comments. The waiting game sucks. G-d bless all of you.

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Sam33's picture
Replies 9
Last reply 6/27/2017 - 11:39am

Hi everyone,

10 months after learning one of the sentinel lymph nodes contained micro metastasis of 0.03 mm.(no dissection of lymph nodes) and 14 doses of mono Keytruda (minimal side effects), I had malign melanoma metastasis on one lymph node (positive Pet CT scan and positive fine needle biopsy), yesterday.

What should i do? Two options to choose from my oncologist.

1) To add Yervoy to Keytruda and watch around 2 months if it will work on the lymph node (to understand the effectiveness of combination therapy) and remove the lymph node after 2 months.

2) Make a partial lymph node dissection (2 or 3 levels) of neck and adding Yervoy to Keytruda.  

I appreciate your recommendations..

Best,

Sam  

 

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Replies by: Anonymous, Cwikholm, Janner, SABKLYN

Hello.

My girlfriend recently noticed an odd looking lump on my back that looks very similar to a blood blister.

I have had moderate back acne for quite sometime now (I'm 22) and she will sometimes mess with the acne on my back and squeeze / pop zits that form, and that's when she noticed this lump.

(I know you should never pick at zits, and this recent scare has deeply engrained that now. No more.)

Anyways, about 5 days ago she was over, and didn't notice this blood blister like marking on my back. Which means it had to of formed somewhat recently. And I remember tossing around this morning before waking up for work and feeling pain around the area where the blood blister was found.

But... after over Googling, looking at pictures of my back, and learning what melanoma and NM looks like I have managed to freak myself out completely.

It looks so similar to NM, skin cancer is herditary from what I've read (both my grandfather and mom have it), and I have pale skin, burn easily.

All the symptoms are there from what I can tell, and that's what worries me the most.

Obviously I'm hoping that I've over-hyped a simple blood blister that formed from my girlfriend squeezing something too much, but I can't be entirely too sure yet.

Is it common for a 22 year old male to come down with melanoma?

I have been burned several times, 3 that i can remember that were fairly bad. (Blistering / peeling).

But for that reason, I haven't had much sun exposure or bad burns for about two years or so.

And my next question is, what's next?

Do I schedule an appointment with a dermatologist? Do I go to a GP, ER, cancer center? What do I do?

I'm at a loss, and I'm terrified because from what I've read often times doctors mistake NM for a blood blister. And that's what this looks like, as I've said.

I'm too young to have something like this happen (at least I thought) but my newfound awareness of melanoma has me thinking the worst case scenario may be my reality. I'm now a melanoma expert, by the way. Appreciate it, Google.

Thanks for reading this lengthy, whiny post, and I look forward to hearing from everyone.

Best,

Connor

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/26/2017 - 12:42pm
Replies by: jennunicorn, sgreenberg

hallo Warrios, I need your Help 

My mother tok her first dose of Pembro Last thursday  and since saturday im observing serous disturbances in her behavior as 

Agitation 

confusion 

seeing think that are not really there 

she is desoriented and dont even knoe who she ist

 

sombody hier got the same experiannce on Pembro  or  that could be  the first signs of brain metastases

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smyers5015's picture
Replies 4
Last reply 6/26/2017 - 3:34am

Hi,

I'm a 52yr old male, and In April I was diagnosed with metastatic melanoma, a 5.1cm tumor on one of my adrenal glands and a small 13mm tumor on the right lower lobe of my lung.  They were unable to find the primary.  Last week I received my 2nd cycle of yervoy/opdivo and have few lasting side affects... mostly fatigue but occasionally a fever or sore muscles/joints.  Although I am letting my oncologist suggest the course of action, I know there are things I can do to try and help myself, such as taking the correct vitamins and supplements to help my body fight the tumors.  Currently I'm taking a men's multi, 1000iu D3, Tumeric, and Resveratrol.  Are there any suggestions out there that could/would make this regimine more theraputic?

 

Thanks!

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