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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violet33's picture
Replies 4
Last reply 10/15/2017 - 11:50pm
Replies by: violet33, marcy23, MM1bVet

Hi everyone. I've read a lot of posts last year when I had my first atypical mole biopsied, but this is my first post. I'm 30 years old and went for a full skin check for the first time last year since I had had my second baby and wanted to make sure some of my moles looked ok. When I went for that visit my derm biopsied one mole and it came back mildly atypical.

Had my yearly check earlier this year and we biopsied two...one was mildly atypical and the other was moderately atypical, which I went back and had completely removed with clear margins. I asked my derm at that appointment how much higher are my chances of melanoma since I have atypical moles, and he said the general population is about 2.5% chance, and I'd be at about 7% chance.

Fast forward to two weeks ago, I went in to see him because I couldn't tell if one of my moles had changed or not (it was pretty dark, but I couldn't remember if it had always been that way or not) so to be on the safe side we biopsied it along with 5 others (I asked him to because I just wanted to stop thinking about whether or not they were "bad"). My darker one came back moderately atypical (which I will do WLE in a couple weeks), 4 came back mildly atypical, and 1 came back just a normal compound nevus.

I do have lots of moles...none of the ones I've had biopsied have looked crazy different or anything like that, just a little off from all my others. I only really just started paying really close attention to my moles last year, so I couldn't tell you how long I've had all the atypical ones or if they are new or not. 

I don't believe I fall in the DNS category, but I thought I might ask my derm next time I see him. No family history of melanoma either.

So that brings me up to 6 mildly atypical and 2 moderately atypical biopsies...I know I also have some other moles on my body that would be considered atypical, but my derm says we can let them be unless they start to change (I'm assuming because they are probably mild?). My question/concern is: am I at a really high risk for melanoma now that I have 2 moderately atypical moles and lots of mildly atypical ones?

I know not everyone who has atypical moles will go on to get melanoma...but I find myself worrying about it all the time because of my two small kids...the worry of the worst case scenario of getting melanoma and not surviving it and leaving my kids without a mother :( .

Sorry this was so long...

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Jabujj's picture
Replies 3
Last reply 10/14/2017 - 12:55am
Replies by: Anonymous, jennunicorn, sister of patient

Happy Friday everyone.

For those that remember I posted my fiancé's situation a month or two back. On October 3rd, she had her WLE and SLNB. We got the results yesterday (via her patient portal online) and everything came back negative.I am so relieved and happy, I cried upon hearing the results. I didn't want to just 'disappear' off the board, as I wanted to come back and tell everyone so that others in our situation can try and destress a little unlike me. I know my fiance now needs to be viligant and watched so we are prepared for that.

A big thank you to Janner, Celeste, Jenn, and Barb for all of the help/replies/comforting thoughts. I have been reading your post Celeste and Jenn and I am wishing you all the best, prayers and good thoughts through your fight.

My advice to those who are awaiting results (ours took 2.5 months) is if possible get away and do something to keep your mind occupied. My gf and I took two trips, one to Tremblant (Qubec) and one to Banff (Alberta) to do some hiking. Here is two pictures if anyone is interested:

https://ibb.co/fXnPyw

https://ibb.co/fVZnJw

I just had two follow-up question that maybe someone could answer. I will definatley ask the surgeon, but our follow up appointment is in two weeks.

On the initial biospy, it says "melanoma in Situ extends to the lateral margin" as we could see a tiny speck of mole still left at the original bisopy site.

On the WLE report, when talking about the eliptical piece of skin they took it reads "No residual malignancy or dysplasia in the planes of sections examined."

How come the WLE didn't indicates it didnt see any melanoma in the planes examined if the biospy said there was still melanoma in situ at the margin?

My other question is on the WLE it says "There is a round ulcer-like lesion on the skin surface that measures 0.4 x 04 (the original punch biospy). This lesion is 0.7cm from the nearest resection margin."

Shouldn't the margin be 1 cm around it?

Thanks again to everyone!

Jabujj

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/12/2017 - 7:19pm
Replies by: Anonymous

Hello, I'm confused about the pathology testing. I had a biopsy, got the results, then surgery, and am waiting the results of the surgery now. Is it common for results to change between biopsy and excision? Am I waiting just to hear about the margins? 

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zont's picture
Replies 6
Last reply 10/17/2017 - 11:12am

Hi All,
I am little confused and I need any ideas from you:
Since 2016 Nov I have gotten treatment with Opdivo (before I took mekinist + tafinlar 2014 - 2016)
But in 2017 Sept PET CT showed new MTS in liver and pleura.
My doctor advices me to add Yervoy (3mg per 1 kg) and decrease Opdivo from 3mg/1 kg to 1mg/1 kg

Did anybody the same therapy, I mean adding Yervoy after regression on Opdivo, or probably another options?
Thanks in advance! 

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MelanomaMike's picture
Replies 20
Last reply 10/16/2017 - 11:09pm

Hi guys, been awhile since iv been on, hope everyone is well. My Thoractic surgeon just called me, we had a surgery date of the 23rd {10/23/17} and he just called to say my CT scan i just had revealed my original tumor on my right lung {lower lobe} has grown to 2.5cm and a few more has sprouted up {smaller ones} so, he feels surgery isnt a good approach right now. Hes ordering a biopsy into my "left" lung where there is an easy access much smaller tumor {which was also there originally}. After my surgery in my left shin {june 29th 2017} those scan's  that where performed revealled my lungs activity one tumor on the right {larger of the two} and one little one on letft lung. It took me some time to get my head around either Chemo/Imm therapy or surgery, and after a month i decided to do the surgery & now its cancelled due to its "multification" of more tumors {another words its aggressive}. i mean wow! just in 2 months or less  its spreading fast? goes to show its urgency. My surgeon assured me if i had agreed to do the surgey a month ago, it would have been a waste of time accept a true diagnosis wich he already knows its melanoma by its looks {plus ive had 6 prior surgeries for Mel tumor removal.So, now chemo or Immunal  therapies are my only option, i hear Yervoy is good? and its not harsh on the body?and can it be done as an "outpatient" setting? any info or questions please write me, it just got even more serious for me today with his phone call, or, i may have been in denial thus far...im scared now, im not gunna lie...Take care brothers & sisters, Mike Pruitt

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SDFun's picture
Replies 2
Last reply 10/12/2017 - 11:51am
Replies by: SDFun, Bubbles

I have had Chonos disesa since i was 15 years old, 62 now. I was on the intial double blind study in 1972 for 6-mp ( purithon) an immonsuppresent which was a wonder drug for me. the last 10 years saw increasedsquama and basil cells and now a very fast growing melenom stage III. I al looking to see if other petients on long term immon supprensants and how aggressive they choose to be after the intial dignosis. I have a great onogolost but I don't think he has much expereince with a patentien immonsuppresed for 40+ years

 

Thanks

Nancy

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TexMelanomex's picture
Replies 1
Last reply 10/11/2017 - 4:01pm
Replies by: MovingOn

Ok Warriors, even though this might not apply to very many people on here at this time, maybe later down the road there will be warriors who it will apply to. So feel free to skip unless this has some relevance to you or you are just curious.

The PV-10 intralesion injections are interesting to say the least. I was going to upload the pic of the black-violet liquid in the syringes but I see that either it has to be posted as a link to the pic or I'm not savvy enough to figure out how to add a pic to the post. Take my word for it, it looks black because it is such a dark violet/purple color.

It was explained that for most small, subcutaneous lesions it burns a little and subsides during and after injection however, this would not be the case for me because the target lesion was large, hard, and in a "tough spot" (near and under my left clavicle). Well, Dr. Ross was spot on and this was not the case for me. I typically feel like I have a high pain "tolerance" and can mentally check out. I should also say that I have no fear of needles and prefer to watch injections, lab draws, etc. So, having said all that I would be dishonest if I told you anything other than it was quite painful. The sensation was a melange of buring, aching, and - if this makes any sense - like my entire shoulder and left arm bones were being broken. The feeling between injections (there were three, 5mls each) was more of burning and tingling in my shoulder and all the way down to my left hand. I felt a little nauseated during the worst of it, but luckily for Dr. Ross, his assistants, and the MDA janitorial staff I did not vomit. 

While the pain was pretty intense and different than any other pain I have previously felt, it does pass relatively quickly and becomes manageable within minutes of the injection being completed. I received the maximum "allowable dose" for this trial and I suspect if it had only been one injection it would have been less intense. Clearly my pain was obvious because it was offered to perform the next round in the OR under full sedation, but this would be overkill in my estimation since the pain does subside fairly quickly and I think if I just brough my best headphones and cranked up some Metallica to volume 10 I could probably do a little better with distancing myself from the reaction. I also don't want to have to spend an additional day in the hospital, a guy has to work to pay for all these treatmens afterall!

Afterwards, the site is bright pink/purple and your urine becomes a pink/rose color (nobody told me this beforehand so I freaked out a little thinking it was blood in my urine, it wasnt). The site, now at the roughly 22 hour mark is sore but nothing terrible.

I don't want to give anyone the impression that other intralesional therapies are painful (people have already posted to the contrary) or even that the needle itself was painful, it wasnt. I do think that had the dose been smaller or the lesion in an area with more adipose tissue or perhaps not so close to bone, this wouldn't not have hurt as much.

Other than the staining of the area where it is injected, a little soreness, and of course the rose pee there aren't really any remaining side effects from the injection. 

Taking all of this together, I would not discourage anyone from doing this procedure if it is offered or becomes available in the future if it is approriate. The company that makes PV-10 is called Provectus so it might be worth keeping an eye on their company and the research that follows. To steal a term from Bubbles, I am happy to be one of their "ratties". If anyone has questions about this please feel free to post or email me. Also if someone can tell me how to post pics I'd be happy to post those or a link to them. 

Best wishes to all,

Tex

Tex

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/12/2017 - 5:24pm
Replies by: sister of patient

Hello all ,

 My two year son has had a black mark on his big toe right foot for around 4 months I never gave it any concern, just thought it was a bruised toe when it was taken ages to go away again I just put it down to a bruised toe nail . My son had never indicated to me that he had ever hurt his toe , also at no point is it sore to touch red or inflamed. On Friday I noticed that it had changed shape it was now growing downwords towards the nail bed and actually at one point it's clearly on the nail skin fold  . So because It's clearly got bigger and it on his skin and not the nail I took him to see the nurse . She says it " looks not good " but will get a GP to have a look GP agrees she does say to me she has never had to refer a child this young to a specialist and explain to me he will need a biopsy.

 

so now I am terrified waiting on someone to contact me been told it won't take longer than two weeks but two hours right now is feeling like a life time . I have done some research and it's definitely not a streak more like a very poorly drawn and rough rectangle/circle it only comes past his nail on one point and it's no bigger than 3 mm . It's also a very dark deep black colour no other colours does fad very slightly when you look properly at it around the edges .

just looking for guidance advice tips help knowledge anything . Cheers 

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TexMelanomex's picture
Replies 8
Last reply 10/11/2017 - 12:46pm

So, I thought I would do something a little different. I realized that there are so many unkowns to all of us as we go through treatment and it might be helpful to some to shine a little light on one of the unknowns, at least as I experience it. So, I will be logging my first Pembro (Keytruda) infusion so that people might know a little more about what to expect.

1700: Taken back into my infusion room at MDA, much better than I anticipated since I thought I would be sitting in a chair amongst several chairs and IV trees. Adjustable bed, TV with on demand movies, warm blankets, pretty swank!

1705: Saline drip started while awaiting pharmacy delivery of Keytruda.

1715: Keytruda arrives and let the healing begin!!

1720: Nothing noticeable, no weird tastes, burning, or sensations. Nothing noticeably different from the Saline drip.

1730: My hair turned neon green and I have x-ray vision now! Ok, not true. Still nothing noticeable.

1735: Room service cruised by and gave me a sandwich and chips with drink...now this is more like it. Turkey on wheat, Jack Reacher 2 playing, and WiFi signal quite strong.

1745: About to wrap this up and hoping room service will make one more pass :-) Still nothing in terms of reactions or really anything, at all.

1805: Well that concludes installment one of the "Live Feed". If any of you are worried about Keytruda infusions, I can tell you based on what I just experienced, the infusion itself is very, very, unremarkable and I pray that the results are quite the opposite!  I will post later about the PV-10 injection...whole different animal that was!

 

Tex

 

 

Tex

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/16/2017 - 1:48pm

Ok, I am not the best patient in this world. I am really anxious and I am really not good at coping with health issues. Yesterday I went to a dermatologist (specilized in skin cancer) to check some dark spots on my face. Well those were nothing but I asked her to check a couple of moles and she found a slightly atypical mole I think I had for years but to be honest I am not sure if it changed recently or not.

She didn't seem concerned but she did a biopsy and now I have to wait. 

 

What I don't understand it's the language she used on the paperwork she gave me. Is slighlty atypical nevus a technical term (is there an official scale or what) or just a random description?

 

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brewgirl68's picture
Replies 2
Last reply 10/10/2017 - 7:08pm

Good afternoon, everyone - 

I'm 32 months NED after IIIc, right axillary lymph nodes, no known primary. I had a CLND, no adjuvant treatment (nothing was available except for interferon - no thanks).  No symptoms since then - I've continued to feel good! 

I've been on 6 month scans since surgery, with yesterday being the last one before we go to yearly scans. Good news: the end result of the report is NED. Slightly worrisome news: a small "lesion" on my right kidney that is "incompletely characterized". From the report: Stable 10 mm hypoattenuating cystic lesion in the midpole the right kidney, likely representing a cyst although incompletely characterized. No hydronephrosis.

So...I know there is a correlation between melanoma and renal cancer, but I'm not jumping to the conclusion that this is cancer. As the report says, it is "likely" a cyst - but then again, it's not FOR SURE a cyst. And without further investigation of this lesion, how can the report end with "IMPRESSION: No evidence of recurrent or metastatic disease in the chest, abdomen or pelvis"? 

Does anyone here have experience with this situation?  

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Coconnor16's picture
Replies 3
Last reply 10/9/2017 - 11:35pm
Replies by: Toby0987, jennunicorn, Anonymous

After 2 successful results and 1 1/2 years of treatment on yervoy my latest scan showed a 9-10 mm subcutaneous mass in my right buttocks. Can a tetanus  injection I had 2.5 weeks prior to the scan be the answer?? 

Please help if possible.

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Irishone21's picture
Replies 6
Last reply 10/12/2017 - 9:22pm
Replies by: Irishone21, SDFun, Janner

Hi,

I am new to all this. Had a shave biopsy a month ago that came back as melanoma. Path report lists the Breslow thickness 'at least .44' and the Clark level 'at least III'.  Four days ago I had the tumor out (not the WLE), &  in 2 weeks I go back to get stitches out & find out what's next.

My question is: how accurate is this due to having a shave biopsy and do I assume that those numbers will go up since it was only a tiny piece of a pretty large spot?

Thanks!

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Jayming86's picture
Replies 5
Last reply 10/10/2017 - 1:33pm
Replies by: obtu.bt, Jayming86, Threefitty, Anonymous, Ed Williams

I'm 31 with stage 3b, fully resected, NSD.  I'm waiting for my gene testing to determine if targeted therapy is an option.  If not I'm suppose to wait for the nivo vs ipi/nivo trial to start for my adjuvant therapy.  It's been tough to say the least, but I'm pushing on with the fight. My question for y'all is there a possibility that after treatments there won't be a recurrence?  I understand everyone is different, and my chances of recurrence are high.  I just want to hear if there is a story of such a situation.  Also, how long should I wait for the nivo vs ipi/nivo trial?  Should I just do the yervoy since I can do it now?

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Raeofsonshine's picture
Replies 3
Last reply 10/11/2017 - 12:30pm

Hi all!

14 month post WLE and CLND.  Stage 3a.   Was followed up with pretty closely the last year.  Last PET was June.  A little "hot spot" appeared in the outside of my calf about 6 inches above/ right of my WLE.  Had an MRI and was told they thought it was nothing.  A couple of weeks ago I started to notice a pea size lump in that spot.  Anyone here have any experience with intransit mets and any insight to offer?  

Thanks much!

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