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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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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Thanny's picture
Replies 3
Last reply 7/13/2016 - 2:56pm
Replies by: Sflynn, desertsun, geriakt

Hello all, I'm developing dry and flaky skin around the corners of my mouth and on my eyelids. I'm not having any luck keeping it at bay with neosporin or lotion. If you have any suggestions please help. 

 

Regards,

 

Tanny

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MelissaCK's picture
Replies 5
Last reply 6/29/2016 - 8:19pm

Hi everyone,

A couple weeks ago I went to the dermatologist for a routine body scan, simply because I hadn't been in awhile. She removed two moles from my back and a few days later called and said they were atypical, and one was pre-melanoma (I think those were her words, my head was sort of spinning at that point). She had me come back in for a larger excision so today I went in and she removed the area of skin surrounding the mole. I wish I could recall the size of both the mole and the incision but at this time I can not (I am planning on requesting the pathology report tomorrow).

I asked if this made it more likely that I would get melanoma and she said that No, it's all gone--that it was just in the mole and surrounding tissue and since it's removed, there is no longer a problem. Is this true, that I am good to go now? Are there instances where they run a report on the surrounding skin and find that there is more cancer and that it's spread? What's been your experience?

I go back in two weeks to get the stitches removed so I am hoping to have more answers then. I was feeling okay about this but the more I read the more I realize this could be bigger than I thought. The doctor was really encouraging and didn't seemed worried about anything, but I'm still worried about potential outcomes. My husband is deployed and closest family is about 4 hours away, so I'm just looking for support from people who have been there before.

Thanks to everyone.

Melissa

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Chance16's picture
Replies 11
Last reply 6/29/2016 - 9:40am
Replies by: Chance16, jennunicorn, Anonymous, Ed Williams, Gene_S, jvictoria

Hello,  I'm new to the forum.....In May I had my annual skin exam which they found a mole on my left ankle to be positive for melanoma (1.1 mm). In June I had WLE and SNLB; margins were clear but the sentinel node was positive.  My PET/CT scans and MRI were negative for mets to organs but there were some nodes but doc was not concerned and felt good with results.  My surgical oncologists wants to do a CLND which I do not want (no nodes lit up in my left groin). He also said there was no drug therapy for me (Stage 3C). I am going to Moffitt Cancer Center in Tampa for a second opinion.  I would appreciate any thoughts, suggestions or experiences.  Thank you.

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Replies by: geriakt

Hello all... I haven't posted on the forum in a while pretty much because there wasn't much to say while I was on the clinical trial.

First a bit of history...

Original site right thumb, under nail, colorless melanoma, originally misdiagnosed 06/2014, positive diagnosis 05/2015. 06/2015 Distal amputation to remove the primary site, SNB to identify spread, SNB positive, complete disection performed 07/2015.

Began Clinical trial CA209-238 10/2015 CT scans, infusions, etc., etc.

Today... 7 months later, went from no side effects to all side effects for Nivo, trial suspended, put on steroids... next, 2cm nodule near the original SNB site (left elbow) identified plus a 10mm nodule in the left lung.

06/2015 2cm nodule removed, positive; lung biopsy tomorrow

Will keep you all posted on next steps... most probably, Moffitt, NYU and MSK for second opinions on what to do next.

Juan

Juan

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Aaron's picture
Replies 1
Last reply 7/2/2016 - 3:05pm
Replies by: debwray

So i am sitting here getting my drips and looking over my bloodwork. I see that my red blood cell volume is low again and continues to slightly drop the last three times my bloodwork was taken.  Just curious if anyone else recalls their MCV or MCHC being low.  Granted it is not that low but like I said there seems to be a trend where every time I get bloodwork done it is slightly lower. 

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Kimba67's picture
Replies 6
Last reply 6/30/2016 - 5:53am

I had my surgery Wed, My BF, Sister, and both sets of parents came to support me.  I didn't know if they would operate becasue I was having hypertension issues that could have stopped the process.  I waited one month to have the proceedure and now I have a 7inch scar, 3 inch scar below that and a very sore arm pit. 

 

I went in for the mapping and boy does that radiation medicine burn..lol  All I could say was "Dayum"...4 injections and the tech thought the needle was the worse part...HA

I woke up and was ready to go home.  The next couple of days were a little fuzzy, but I was verticle and moving as well as could be expected.  I was standing in line at the store Saturday and this man behind me asked me what happened.  I smiled and told him I was sky didving when I was clipped by a glider.  My mom giggled and he looked at me so strange.  They he said "noooo", I smiled and said "no"...I had cancer removed. 

 

It's funny how making someone else smile, made three other people smile.  My amazing physician and his team did a great job, He feels he got it all, but now I am waiting on the pathology report from my lymph.  No matter what we go through, we are never alone.  God is good.

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laulamb's picture
Replies 2
Last reply 7/13/2016 - 11:03pm
Replies by: desertsun, Janner

Can someone help me understand what this means?  No mutuations or BRAF?

 

ONSIGHT NGS BRAF SEQUENCING REPORT:

NO MUTATIONS IDENTIFIED.

THIS WAS A NORMAL SEQUENCING STUDY IN WHICH NO DISEASE ASSOCIATIED MUTATIONS OR VARIENTS OF UNCLEAR SIGNIFICANCE WERE IDENTIFIED IN THE TESTED SPECIMEN WITH BRAF (EXONS 11, 15) INCLUSIVE OF V600

CLINICAL AND PATHOLOGIC CORRELATION IS REQUERED TO INTERPRET THESE FINDINGS:

 

 

 

 

 

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