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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Julie in SoCal's picture
Replies 22
Last reply 10/22/2017 - 4:17pm

Good Afternoon, Friends!

I have good news to share!  I am officially a NERD again!  That is I had scans last week and I have No Evidence of Recurring Disease!  How about them apples!?! 

So do the happy dance with me!

I am now 2/3rds of the way through the Lung Cancer Triathlon.  Surgery- check, Chemo- check!  The radiation phase is next and I think I start up this coming Friday.  I've never done radiation, so this will be a new experience for me.  I think I'm going to tell myself it's just like going on a ride at Disneyland!!

Mel seems to be in check, or at least I haven't found any new intransits.  So it's all good!

So looking forward to being done!  But, I'll stop complaining. it is working and for that I'm grateful!

Thank you friends!

Shalom!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Bekah274's picture
Replies 4
Last reply 10/18/2017 - 9:19am
Replies by: Anonymous, Bekah274, MelanomaMike, brendon

Hello, 

sorry to be a bother, may be a case of google has freaked me out. I have a mole on my chest, I’m a 27 year old female.  I’ve had it for as long as I can remember, in the past 2 years it’s started to develop black spots. I went to my doctor who looked at it and said the black spots were due to fake tan.  

However, I hardly put it on and it scrubs off... recently more black spots have appeared, it’s raised and not symmetrical, although it wans’t Symetrical 2 years ago and was only slightly raised.

is this something anyone has heard about before, I’m worried I go back and seem as though I’m panicking... sorry for the trouble.

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SDFun's picture
Replies 7
Last reply 10/18/2017 - 10:35am

Hi

 

I just got a voice my from teh billign depatment at the hospital my onoclogist is at that implies that insucne will not cover this testing and it may be $5000. I was wonderign what other people have learned? Did you have the testing and if so did your insuance cover all or a portion of it

 

Thank you

 

Nancy

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Dreaf01's picture
Replies 7
Last reply 10/20/2017 - 8:07pm

I just wanted to seek some advice from warriors on this board because I am kind of stuck and feel like I have no where to get advice from. Back in Dec. of 2016 I had a WLE and groin SLNB for Melanoma stage 1b 1.5mm not ulcerated, 4 mitosis, clark level IV. The margins came back clear and the SLNB was negative. Since the surgery I have had a small lump right near the SLNB scar. I have had 2 ultrasounds on the lump and both came back stating the lump is a normal appearing lymph node. How accurate is ultrasound? My surgeon stopped seeing me since I moved out of the area and I am now following up solely with the Dermatologist. I do have "pulled muscle" type pain in my groin area since this surgery, is this normal? I have to admit being a single mom to a 1 year old during this has caused me a lot of anxiety, but I feel like I cannot get anyone to take my concerns seriously. I have headaches and backaches and I feel like my concerns do not seem to be concerns of the PCP. I know with my stage I would not usually be referred to an Oncologist so I am wondering who I should discuss my concerns with. Thank you for any advise you can give !

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Jeff_in_FL's picture
Replies 5
Last reply 10/20/2017 - 8:04pm

Hi all,

Thought I would run this past you ...

May 8, 2017 I had an excision on my right calf ...Nodular variety. The VA surgeon did a pretty good job (flap method). Up until recently, I haven’t had any issues with it, but now there is a small pea size bump under the skin. Probably nothing at all, but I thought I would get some opinions while waiting for my VA appointment in early December. Wondering if this is a real common thing.

Thanks :)

Jeff

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Good morning - 

I had the tumor removed and a node biopsy done last week.  The tumor site came back clear but one of the three nodes showed a microscopic measurement - 1/20th of an inch.

I'm having a CT/PET scan done this week along with meeting with a medical and surgical oncologist.

Any advice as to what questions to ask the Dr I meet with?

I don't have an actual staging from the pathology but have been told I will most likely start immunothereapy and monitoring from there.

Donita 

Donita

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Anonymous's picture
Anonymous
Replies 5
Last reply 10/17/2017 - 8:42am

Just a question.  I was diagonosed with melanoma in situ in August and had surgery in september.  The initial bioposy had removed all melanoma.  I am switching health insurance companies.  On questionare it asks if you have cancer and treatment.  Do I mark yes or no?  I see a lot of different opinions regarding melanoma  in situ being cancer or not.  thanks.

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skylark's picture
Replies 10
Last reply 10/23/2017 - 12:37pm

Getting the melanoma diagnosis last month was surreal -- and really frightening.  Now I'm recovering from a Wide Excision (about 6 inches long) on my upper thigh and SLNB in the groin.  At three days out, the incision from the SLNB isn't bothering me too much, but the WLE incision is really swollen, especially at each end of the incision. It looks like two volcanoes!  Still uncomfortable to stand for even a short time.  Is this normal and if so, how long does it take for the swelling to go down?  I'm trying to stay off my feet as much as possible, but that's not helping with the worrying about what's next.  Any words of wisdom greatly appreciated.

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/16/2017 - 1:45pm
Replies by: Janner, Benjamin, SDFun, Anonymous

https://ibb.co/mfK25m

I one day noticed this black/darkbrown spot on one of my moles. It is located on my trunk on the right side. The mole feels a little "puffy" and is about 6mm in diameter on the widest spot (being oval). I haven't seen any changes in it since i started tracking it (only 2 weeks ago). As for my other moles they all seem to be darkbrown or a bit lighter shade of brown with a darker brown center or spot so this one is not a complete "ugly duckling". The black/ darkbrown spot is darker than the darker spots on other moles though.

Wondering if i should keep tracking it on my own or see a doctor? And if the mole does not evolve is there any chance of it being dangerous?

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Nell's picture
Replies 4
Last reply 10/15/2017 - 10:21pm
Replies by: Nell, Anonymous, jennunicorn

I have had 27 infusions of Keytruda.  This week I have been miserable with what feels like a nasty Urinary Tract Infection. My regular doc has taken 2 samples, and the bacteria that should be making me feel like this are not there. Could I be developing a new side effect to Keytruda after all this time?  I know UTI is not a usual side effect, but there seems to be no reason for me to feel like this.  I wish you all well.  I pray this disease can be a treatable one for each of us.     Thank you, Nell

One voice can make a song; one life can change the world.

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MattS's picture
Replies 1
Last reply 10/16/2017 - 10:26am
Replies by: Janner

Does having lots of atypical moles (but not DNS) mean someone will get melanoma one day? I'm new to all this and have lots of questions for my dermatologist at my next appointment, but that isn't for a couple more weeks...

Right now I have 4 moderate atypical and a few mild atypical, but no severe atypia...how high of a risk am I?

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TexMelanomex's picture
Replies 10
Last reply 10/28/2017 - 1:25am

Hey Warriors, I hope you are all enjoying your weekend and relaxing! I wanted to post a few very minor SEs I've noticed since my first infusion of Keytruda on Tuesday (for informational purposes only, not griping :)

1) Minor flu-like symptoms and fatigue (not enough to keep me home from work or being able to do all my normal things), this lasted only 48 hours and resolved by Thursday night.

2) Sunlight sensitivity. This could be from the PV-10 so I can't blame the Keytruda but this has consisted of my exposed skin turning light red and itching like crazy even after brief exposure to sunlight (i.e., the side of my face after driving for 10 minutes). I don't know if this has improved since I have made sure to cover up even more since this started happening. I can say there have been no rashes or itching since the first 48 hours and benadryl topical cream was very effective.

3) Night sweats and getting up to pee at night. These are new developments but tolerable...I suppose its better to wake up to pee a few times vs not waking up and peeing the bed! The night sweats don't wake me up, but when I do wake up in the morning, the pillow and sheets are soaked.

Overall, I consider these things pretty minor and they are pretty easy to adjust to.

Rock on Warriors!

Tex

 

Tex

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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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