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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CharmaineD's picture
Replies 8
Last reply 7/8/2016 - 9:20am

Good day to all, found this forum while searching for information. So glad I did. The entire internet is filled with doom and gloom about Melanoma and this is the first place I have found positive stories etc. I have not been diagnosed so obviously I am in a diffferent place than many on here. But I am desperate for more information about what I am facing as my doctor has been very vague. I have been in serious health situations in my life before but none has scared me more than the prospect of being diagnosed with Melanoma (have no idea why but I am freaking out a little). Usually I am a very tough person.

I have had a large (over 1cm) flat brown mole (with a much darker brown edge on one sideonly  on my back for at least the past 7 years that I positively know of. I actually have a number of moles on my back but this one is biggest. It could have been there much longer but it is not really a spot I can see without contorting myself like a pretzel.  The first time I noticed it I asked me GP to check it and he said I should not worry as it was flat and I should only worry if it elevates. Having no reason to doubt his opinion I never thought of it again. My eldest child started medschool 5 years ago and did her dermatology rotation this year. She asked me to please let a dermatologist check it out. I was very suprised when the dermatologist told me she thought it looked suspicious and took dermoscope photos of it. She said I must come back in three months and if it has changed or grown we remove it. So suddenly my  "harmless" mole went from ok to suspicious. I asked her what should I expect and she was vague.

When I got home I started researching on the internet (frightening thing) The more I read the more worried I became so I called her and said I wanted it removed rather (I am sure she thinks I am paranoid as her words were, I am happy to wait for three months but if it is causing you anxiety lets remove it). 

So looking for a honest opinion, am I letting my anxiety run away with me here? Surgeon said it was going to leave a relatively big scar but thats ok. So pardon my paranoia but since this mole has been around for years I am very worried that it had plenty of time to do harm if indeed it is malignant so it makes sense to act faster?

I feel like I am overreacting when I read all the brave posts on here but I really need some honest information about what I should do. Thanks for reading and I appreciate any feedback

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Replies by: desertsun, beneficii, Janner

I've had some soreness when lying down lately, and I was able to localize it to these 3 areas (circled in green):

http://imgur.com/cik5hug

http://imgur.com/ST4mApf

The pictures are taken from different angles.

The moles in question do look kinda strange. I have a doctor's appointment on 7/21 and I will get it checked out then.

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sallyandree's picture
Replies 4
Last reply 7/2/2016 - 2:30pm

Hello,

Do you know of anyone who has Stage IV melanoma which traveled to their stomach? My significant other's melanoma was removed 6 or 7 years ago, but we found out in March that the stomach problems and severe anemia he had in late February were due to the melanoma traveling to his stomach. He has been taking the Opdivo and Yervoy regimen (soon will be starting just taking Opdivo every two weeks) and we are hoping for the best. But it still is a brutal regimen! I understand that melanoma traveling to the stomach is rare.

Thank you,

Sally

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Happy_girl's picture
Replies 2
Last reply 7/4/2016 - 10:29am
Replies by: Linny, jennunicorn

I just wanted to share that I was able to talk with my doc and she is very confident that the spot on my liver is a cyst.  Just wanted to share the good news! Thanks for listening while I had my freak out moments! 

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Replies by: Bubbles, JoshF, MoiraM

I responded to Yervoy/Ipi. It shrank my tumours. It also took out my anterior pituitary gland and the damage is permanent.

When I go to see my endocrinologist and my oncologist, they both say that they are anticipating lots more cases of people with damage to their glands as a side effect of immunotherappy for cancer. They see me as as the first of many.

I imagine what I would feel like if my anterior pituitary gland had packed up but the Yervoy/Ipi had not worked. I have said that to them and they both hint that only people whose T cells had been activated by the Yervoy/Ipi would experience the damage to their anterior pituitary gland.

If that is so, I feel a lot better about all those people in the US who have NEAD and are 'doing' Yervory/Ipi because it has now been approved as adjuvant therpy.

Does anyone else know of evidence to support the hypothesis that the autoimmune side effects of Yervey/Ipi only happen in people whose melanoma cells are also being attacked?

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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sleepyt23's picture
Replies 6
Last reply 7/2/2016 - 12:48pm

Hi all. I was diagnosed with Stage 3b in November 2014 at the age of 31. My primary melanoma was just to the right of my spine with a depth of 1.6-mm and ulceration. Two sentinal nodes under my right arm were microscopically positive. I had the rest of those nodes removed and all came back negative.

At the time, the best treatment around, to my understanding, was Interferon. We talked about beginning treatment, but my wife was 3 months pregnant and we didn't really see too much benefit when compared with the side effects. So we opted out of the Interferon and went into a wait and monitor mode.

I've had numerous moles removed and have had two scans. So far everything has come back negative. I went to see my surgical oncologist about a month ago and he was rather adamant that I talk to my medical oncologist about Yervoy. He said that I'm considered high risk and I would likely tolerate the Yervoy treatment with minimal side effects. 

My wife and I met with the medical oncologist yesterday and we're running things through insurance to see how much I would be responsible for out-of-pocket. I hear that there may be co-pay assistance through the manufacturer to further reduce my expenses. There was also talk of having a port installed since I really only have one good arm as far as injections or IV's go. 

I'm curious how the port feels and what the procedure to have it implanted is like.

TMM

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youngann's picture
Replies 4
Last reply 7/3/2016 - 7:45am
Replies by: Anonymous, SABKLYN, youngann, jennunicorn

This question may be better answered by the long-termers here. If I were to start a fund-raiser to benefit Melanoma patients, which organisation would be the best one to donate the funds to?

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Bradley75's picture
Replies 2
Last reply 6/30/2016 - 8:31pm
Replies by: jennunicorn, Janner

I had my every three month PET/CT this week and the came up with something that I am not sure about.  It reads as: new 5x10 mm FDG avid nodule or lymph node in the perirenal fat inferior to the right kidney.  They go on to say SUV max 3.2.  This is concerning for possible metastasis. 

Their recommendation was to come back and have another scan in 6 to 8 weeks.  They want to see what changes happen and either remove it or call it reactive.  I have had lymph nodes light up the scan in the past year that have been determined to be reactive lymph nodes, so that would be nothing new for me.  There was one under my right arm that had a fine needle, ultrasound biopsy performed on it and it came back benign.  There has never been one near an organ, if that makes a difference  The kidney one can't be handled that way so the only way to know what's going on is to have it surgically removed.

The issue I am having is the waiting 6 to 8 weeks.  My onc gave reasons why we should wait, but it is hard to be at ease about waiting.  The thought of it getting worse while we sit and wait is not good for the soul.  My care team is Mayo in Rochester so I think trusting their opinion is a decent option, but I hate waiting.  Anyone have any input?

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Anonymous's picture
Replies 6
Last reply 7/2/2016 - 12:20pm
Replies by: twolf9246, Anonymous, jvictoria

Hi, I am just curious if anyone can help interpret this report.  I went in today for a second shave biopsy and the doctor said this type of nevus is rare and they just don't know whether it is anything or not because it is difficult to distinguish from melanoma.  He said he didn't know why it didn't mention the spitzoid cells in the diagnosis.  They will call me again in a week or so when they get the results.  When they called me on Monday to come back in, the lady who called had no idea what it was, but said it was good and no melanoma, but she said really didn't know how to read the report.  The person who took me back couldn't explain it to me, either, and said ask the doctor, that he had rarely seen the terminology.  When the doctor came in and said it is still questionable, I was quite surprised and don't know if I should be worried or not.  Thank you very much for any help you are able to offer.  

It was read at a Dermatopathology Lab.

Microscopic Description

The sections demonstrate a shave biopsy in which there is compound melanocytic proliferation, consisting of junctional component exhibiting features of dysplastic nevus while the dermal component shows epithelioid and pigmented morphology with prominent nucleoli and moderate cytologic atypia.  No definitive mitotic figure identified.  The spitzoid dermal component inolves the deep margin.

Diagnosis

Desmoplastic Compound Nevus (See Comment)  Comment: The differential diagnosis includes superficial aspect of deep penetrating nevus.  Nevertheless, since the lesion involves the deep margin, re-excision is recommneded to ensure complete removal. 

 

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JoshF's picture
Replies 19
Last reply 7/5/2016 - 10:19am
Replies by: Kimba67, Maureen038, JoshF, Mat, Bubbles, Anonymous, Polymath

HI All-

So things are took off fast this week!!! Been here in Houston since Sunday and have last procedure-leukaphresis tomorrow morning. They say cells should be ready first week of September.

I had 2 sub-q's removed by Dr. Wargo removed on Monday for potential future TIL Treatment. She's awesome...love her and her PA Liz.

Met with research people on trials. Did all the screening, scans etc... scan wasn't great. Long & short of it was by my guess I have 7-12 tumors in lung, liver, pancreas and in abdominal area. Now that big tumor(s) are gone I think largest tumor was 2.4cm x1.6cm. They were mostly in the 1cm range. I didn't read it...too overwhelming for me. Dr. Diab said though there are a fair amount of tumors; this isn't an extremely large tumor load....and to be optimistic because he is. I guess I was more hopeful that the surgery removed a lot. Some grew a bit while others stayed the same. Apparently some smaller spots not picked up on scan almost 2 months ago are now in that 5mm range. Either way...it sucks.

Dr. Diab is great and gave me a detailed rundown on Adoptive Cell Therapy. Honestly, everyone at MDA is very kind. I know some people think they're overrated. So far I've had good experience. I will start ipi back home in Chicago on Friday. Dr. Diab was going to discuss with Dr. Davies at MDA (my primary onc) and my local oncologist the possibilty of adding some abraxene or dacabarzine. The concern is that while I'm doing gap treatment, if I get colitis or other adverse side effect....I can be excluded from the modfied T Cell trial. It seems counteractive but he has science showing benefit....CELESTE????? Either way, ipi on Friday and probably looking at 2 doses before starting washout for trial. Is 2 doses enough to get a response? This is the scary part...the gap between growing cells and getting to treatment phase.

Still going crazy but have a plan....ang fighting to be optimistic.It's still so surreal how things just went haywire on me. I guess with all the years of just having a sub-q here there was a blessing; I just didn;t see it.

Be Well!!!

 

Josh

 

Let's work for better treatments....for a cure!!!!

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Happy_girl's picture
Replies 7
Last reply 6/29/2016 - 11:12pm
Replies by: Prd10, Happy_girl, Anonymous, Polymath

I just got my scan report from my ct scan. It states... Liver is normal in size and ct density. There is a sub cm hypoattenuating lesion in segment 6 , not definitively seen on prior outside hospital pet/ct scan. My question is... Could it have been on the other scan and missed? What is all of this really saying? I'm really praying it is a cyst or maybe a false positive. Thanks for all your help.

is this pretty much just saying the same thing that my last post- spot on liver- is saying? Sorry to keep asking questions- I'm just trying to understand!

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DutchCasey's picture
Replies 10
Last reply 6/30/2016 - 6:23am

Concerned might be too light a term.
A little about me, I'm 47 years old, male, with very pale skin, blue eyes, and blonde hair.
When i was a child my hair was so light it almost looked white.
Needless to say I had several very severe sunburns by the time I hit my teens. At that time I became aware of the risks of sunburns and have never been outside without a shirt since.

Fast forward to my thirties and I find a lump under the skin of my right thigh. Doctor says it a fatty deposit and leaves it at that.
Keeping in mind that I was raised to not complain about health issues and not be a hypochondriac, I felt a change in a mole on my upper back but thought nothing of.
Ten years later I find a scab a little lower than the first mole. Again impossible to see the area properly I peal the scab off. Guess what? The scab keeps reforming.
That area is now a jagged irregular mole that looks the same as the first one.
Last year I noticed a lump on my side under the skin over my lower ribs. Again thought nothing of it. Just another fatty lump. I did notice that I had pain under that area when I bent over, like a bruised rib. Again thought nothing of it. I had three shoulder surgeries over the last couple of years and had gained quite a bit of weight from being sedentary and just thought it was caused be that weight gain.
Couple of years ago my wife noticed that the original mole on my upper back was flaking. Middle of winter and I had some dry skin so again thought nothing of it.
Since the first lump by my ribs I have since developed three more on my torso and one in the thigh on my left leg.
Last week I was with my GP checking out the scars from the shoulder surgeries as they are developing keloid scars which is odd as all previous scars have always healed perfectly.
I decide, more like remember, to ask about the moles on my back. He takes one look and all he says is "oh my".
He immediately sends a referral to a dermatologist. This being Canada there is a wait involved. Can't see the dermatologist till july 19th.
Strange thing is that the dermatologists office called that day and said I am on top of the waiting list for any spots that open up due to cancellations.

Sorry for being so long winded.
Just how concerned should I be? Normally I don't worry too much about health issues as the odds are always in my favour but as I've been reading many pieces are starting to come together.
I'd be lying if I said I wasn't freaking out.

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Ablessedfamily6's picture
Replies 2
Last reply 6/30/2016 - 7:21pm

Hello everyone and thank you in advance for any insight you can provide! I was diagnosed with stage 3b melanoma in 2007: 2.9mm ulcerated primary with micro mets in one lymph node. I was blessed with an aggressive surgeon and declared NED two months after diagnosis. I went on to participate in a gp100 trial at NCI NIH. After five years of clean scans, I was released from NIH and began follow up at UVA. I've had many, many biopsies over the years and everything has been caught at "mildly atypical". For some reason this year, I've had two spots make it to "moderate/severe" and also had two Basal Cells pop up. :-/

First question, is there anything else I could be doing besides the biopsies and waiting? The recent issues have me nervous. Currently, I have 3-5 biopsies every 3 months, blood work every 6 months and CT every year.  

Next question, any one know of any long term side effects from gp100? I'd never thought to consider the clinical trial as the cause of other health problems, but my general physician suggested it and now I need more info, but there isn't any. :-/ Since 2007, I have been diagnosed with Chronic Fatigue, Narcolepsy, Glaucoma, hypoesthia (sp?), peripheral neuropathy, migraines, inflammatory disorder of the skin, tinnititus, abnormal heart rhythms, tachycardia, hypoglycemia, dis autonomic and sluggish digestive disorder. The whole time we have been looking at MS as the possible cause, but frequent scans show no lesions. My dr said that the more research coming out on immunotherapy makes her believe that the trial could be the cause of my health problems. FWIW, before 2007 and between flare ups I am a very fit and active person. I bike and hike regularly and run whenever my muscles will allow it. Many of my specialists have billed me as the healthiest sick person they treat. I do respond well to prednisone, but only at 60mg+ per day and I hate to think the effect that is having on my body long term. 

 

Anyways. I would appreciate any opinions or insights. I feel like I'm losing perspective of the situation. I'm trying to stay grateful for the time I've been blessed to have, but starting to feel like a sitting duck that isn't doing anything to protect itself. :-/ Thank you again!

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magnus31's picture
Replies 3
Last reply 6/29/2016 - 12:43pm
Replies by: geriakt, magnus31

Dear all, I hope you are all coping well. I'm currently stage IV receiving Nivolumab on my 18th month.

'm planning a trip to Eastern Africa this summer where the yellow fever vaccine is compulsary for visas. I've read that one should not take the yellow fever vaccine while receiveing Nivolumab, but unable to confirm this from my doctors as of yet. Any views on this? Best.

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