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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Antonio's picture
Replies 4
Last reply 7/7/2018 - 11:44pm
Replies by: Paulajane, Antonio, Janner

Hey there 

I m a member who lives in Italy . My father  , 75 years old, was diagnosed for an atypical spitz tumor in 2005. Tumor was successfully removed but in 2014 they Found mets on his lymph nodes that were surgically removed. 

His case was really complex and rare but we were confident that the mets would no spread in other in other parts of the body . 

He had a scan a couple of weeks ago and doctors found mets on his lungs and liver . We were all shocked .

He s a braf negative and will start a immunotherapy very soon . 

He lives on a sunny island, and  doctors advice him to have some sun protection when he goes out . Has anybody experience some sunburn from opdivo 

But most important question does anybody knows more about atypical spits tumor that  is rare ,and with  unpredictable potential . 

Thank you this forum is just fantastic!

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K1983's picture
Replies 1
Last reply 7/7/2018 - 11:39pm
Replies by: Paulajane

Hi everyone,

I was diagnosed with Stage 1 superficial spreading melanoma on my shoulder blade in 2015. 

I’ve been going to 3 monthly skin checks since.

I had my Dr remove a larger mole from my mid back 2 weeks ago, which I was notified the following day is atypical, lots of changes happening.. I head back today for wider margins.

Is this normal for Atypical moles? 

Any idea how much gets taken as a rule of thumb? I’m guessing not as much as when they took wider margins for my melanoma but just want to know what to expect.

I haven’t got the path report yet.

I’m located in Qld, Australia.

Thanks.

 

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Olygirl's picture
Replies 1
Last reply 7/7/2018 - 9:27pm
Replies by: Paulajane

My husband was diagnosed in March with melanoma, since then he's had 3 surgery's to remove it which was successful. At his last appointment with the the doctor he asked him to take a look at a very itchy growth on my wrist. The doctor decided to biopsy it. It has been 3 weeks with no results when my husband calls to find out why it was taking so long. They told him it has been sent to 2 other pathologist for review. We we're concerned but continue with life. About 4 days later I get a call from the doctor asking for authorization to do a FISH test and explain what they found. He said it's a Spitzoid they are tough to diagnose they pretty sure it's a Spitzoid Melanoma but want concrete evidence. Does anyone have knowledge of this?

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mrsaxde's picture
Replies 8
Last reply 7/7/2018 - 10:51am

Well, I spent the last three days getting scanned at NIH, and met with my doctors yesterday. I got a decidedly mixed bag of results.

The good news is there is nothing new growing anywhere. The so-so news is that out of the two tumors in my chest lymph nodes, one is slightly smaller but the other is slightly larger. They told me during treatment that this first follow up would not give them definitive news about my response. So right now I'm at "stable disease."

Now the less than thrilling news...I have two small brain mets. One they found on the MRI they did before treatment, and they hoped that it would resolve from the TIL therapy. But it didn't. The other was also apparently there before, but it was small and situated in such a way that Dr. Shindorf said it looked to her like a blood vessel.

So now it's on to radiation for the brain mets, and to hope for better news at my next follow up. Of course this news isn't devastating, but I would have liked it to have been better.

I hope everyone has a pleasant weekend!

-Bill

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homeinWV's picture
Replies 5
Last reply 7/7/2018 - 6:37am

Hi all, 

Hoping to find a little guidance, because I’ve only recently found out about melanoma, and am pretty frightened. Not by diagnosis - I’m 32 and just had a moderately atypical mole removed. I have another that looks like it but smaller, but my derm said it looked fine during my full check and wasn’t worried enough for either biopsy or removal. Didn’t even say it looked atypical. She did her residency at a melanoma institute in DC and has been in practice for 20 years,so I’ve trusted her judgement. I see her in 6 months, and she thinks we’ll be fine to bump to yearly checks after that.

My issue/question is determining my risk. There were two months in my mid-20s that I used tanning beds occasionally. I think once a week. I’ve never gone since then and lord knows I never will again, after all I’ve read. Now I feel like I’ve doomed myself for skin cancer. One article said that a single use increases my risk by 75%. So now I’m essentially guaranteed to develop melanoma?

We have no melanoma history on either side, but my dad did have a basal or sqaumous carcinoma removed in his 50s. I don’t have a history of blistering sunburns. It may have happened once in my life. I’m fair-skinned but do tan instead of just burning ( not that I lay out and try ). Fewer than 20 moles I think. Nothing big.

I know these factors aren’t cumulative but I guess I’m just anxious over what tanning did to my body. I’m afraid of every single spot now and find myself second-guessing whether places are new or old. Just hoping for advice, and that the atypical spot will be my only brush with the scary stuff. 

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Ridingaroundwith27Jennifers's picture
Replies 3
Last reply 7/7/2018 - 1:20am

Hi All,

My latest MRI has come back stable.  They are still watching as they can't tell if the site has increased brightness due to normal healing, radiation injury or tumor regrowth but they were happy that it is stable as the last MRI showed increased swelling around the site.

I've also decreased my Keppra dose from 750mg to 500mg with no new seizures.  It seems like a little thing but it's actually a huge thing for me.

Finally, I have to confess that I had such a miserable reaction to the oral contrast after my last CT scan that I cancelled my 2 month scan.  I have rescheduled and go July 5th.  

I know these procedures are important but I've got procedure aversion.  I'm still on nivo every two weeks.  We discussed moving to the 480mg dose every 4 weeks but I'm nervous I'll have increased side effects so I'm sticking with the 240mg every two weeks.  At least the infusion time is down from 60min to 30min.

I'm still tired and still working on getting the function back in my right foot. This journey has changed me but I feel like I'm one of the lucky ones.  

Wishing you all a great summer and thanks for all your support.

Jennifer

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QuietPoet's picture
Replies 4
Last reply 7/7/2018 - 12:35am
Replies by: QuietPoet, HeidiZ

I have three questions about recurrences in a WLE scar (on the thigh in this case).

1) When they redo the WLE, do they look at the depth of the recurrence and restage if necessary or does your staging stay the way it was?

2) Do they automatically check your lymph nodes even if they aren't swollen?

3) How is healing from a second WLE different from healing from the original? I had a tough time healing from the original with an infection, ripped internal stitches, and just generally slow healing. I'd like to know what to expect with a second one.

Thank you for any information you can give me!

Erika

Stage 1A excised, keeping an eye on another; multiple dyslpastic nevi.

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/6/2018 - 10:28pm

Had my appointment with my oncologist this afternoon and the results were that the disease is stable with no new growth. Unfortunately what was still there currently remains but its wonderful knowing that it isn't growing.

NED status currently eludes me but I'll take this for now knowing that a year ago I was freaking out over my diagnosis of stage 4 melanoma. Good luck to every single warrior on this board. I had a friend have to transfer to hospice and is fading quick but his body while not on any drugs is continuing to fight back. It's quite remarkable and just wish his family the best in their time of need.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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jennunicorn's picture
Replies 29
Last reply 7/6/2018 - 10:24pm

Hello friends!

I wanted to update that my CT and brain MRI on Monday were very unremarkable! *NED dance*

Another 6 months of "regular" life ahead... well, sorta... in 3 weeks I will have surgery to repair a torn meniscus and remove a cyst it created in my right knee, so that's not going to be too fun. I'll be stuck at home recovering on disability... it's funny because I never had to go on disability or take much time off during all the melanoma madness. Hopefully after healing and rehab I'll be in a lot less pain!

 

Sending good vibes to you all as always

Happy Friday :)

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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Hello all.... 4 years ago I had what I was almost sure was a cancerous mole removed from my back.  It turned out it was severely dysplastic and I had a wide excision done.  A month later I had another removed, this one moderately dysplastic, another wide excision. A month later another mole from my stomach came back normal. Since then I’ve been going to the dermatologist every 6 months.  I’ve had a mole on my leg that’s been there forever.  It was dark, about 3mm wide and hadn’t changed.  No bleeding or itching, well defined borders, one half the same as the other.  Well, my dr said let’s remove it so we don’t have to worry about it.  Now, going through the waiting period is again brutal.  He said 90 percent chance it’s nothing, but now I’m wishing I had left it and monitored it instead of sitting here worrying.  

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TnTA2's picture
Replies 5
Last reply 7/6/2018 - 2:53pm
Replies by: TnTA2, Anonymous

Recently, I’ve noticed a few odd spots on my skin and decided to go get them checked out. The dermo saw the mole on my back I was concerned with and said it definitely needed to be biopsied, but she felt strongly it was a dysplastic nevi. She said it is very unlikely it’s a melanoma at this point and that according to biopsy, might need deeper excision if the lab says it’s severely dysplastic as it could eventually turn into melanoma. Does this sound correct? I also had a scrape biopsy on a spot on the back of my head that started as an itchy bump, went away then started itching again. She was unconcerned with it and mentioned what type of growth she though it was, but I figure the name. 

Ive been anxious about skin cancer, especially melanoma, since I’ve noticed these possibly new and possibly been there forever spots. I have never really examined my skin for anything unusual other than checking for ticks after being in the woods. I doubt I’d have paid attention to anything that didn’t look like a tick. I’m a little relieved in the dermo’s confidence but at the same time very anxious about the results. 

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Fortes's picture
Replies 1
Last reply 7/6/2018 - 2:09pm
Replies by: Janner

When I was pregnant with my little one (she is 18months now ) I noticed a new mole that got bigger within few months . Although this mole was very tiny (4mm) . It remained the same size for the past year. No irregularities, one colour and circle.

2 months ago I was at the dermatologist for another reason with my dad. I decided to show the mole to her . She said it looks fine but I think you should remove it . Fast forward 14 days after WLE received a call saying That it’s melanoma in Situ and to go for 2nd wle  . 

I couldnt believe that tiny little spot could have killed me . I’m only 30.

report said;”sections show asymmetrical proliferation of atypical melanocytes. Arranged in nests in the epidermis and single Infiltritive cells. No evidence of dermal invasion. diagnosis melanoma in situ.”

dermatologist explained that I should not worry it’s completely removed and to go for check ups every 6 months . 

The problem I can’t stop thinking and reading on the internet that I’m at risk for other melanomas, for breast or pancreatic or other cancers. I read about a link of other cancers with melanoma that I’m not sure if it’s because of the BRCA gene. I have no family history of melanoma or other cancers. I’m terrified and not sure if I’m over reacting or not. I know that insitu is great and should be thankful but my anxiety is not cooperating,  i don’t know what type of melanoma it was and of it was sun related or not. Could it be that it was overdiagnosed? 

Thank you for your time reading my long question 

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Coach2u's picture
Replies 11
Last reply 7/6/2018 - 10:51am

I have had a tough couple of weeks. Developed colitis as a result if lpi/nivo and in and out of hospital twice. Lost 15 lbs and now on major steroids but they may not be doing the trick. They are talking recimade which has so many scary side effects. Does anyone know about this treatment? Having a tough time. MIke K.

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Jsneathen21's picture
Replies 11
Last reply 7/6/2018 - 8:59am

I am 26 years old it took approximately 2weeks for the dermatologist to tell me my results of this even... They sent it off for second opinion at a university even.. To tell me today I have this? And that it's rare in my age group and at all!! Does any one know anything about this rare type? Please let me know thank you!

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As part of their Commitment to Patients and Caregivers, our partners at Novartis are working to make the clinical trial experience more patient-centric and widely accessible. To this goal, they are currently seeking melanoma patients who have participated in a clinical trial in the past two years and who are interested in serving on an advisory board. This board would offer the patient perspective and important feedback on what can be done to improve clinical trial design, whether digital tools could be helpful to support clinical trial participation, and what barriers exist in making trials more accessible to diverse patient populations. This meeting would take place in New Jersey on Thursday, August 9 and participants will be compensated for their time and travel expenses.

Novartis seeks to assemble a diverse group of patients and has reached out to the MRF to identify those in the melanoma community that may be interested. If you have participated in a clinical trial in the past two years and would like to be considered for this opportunity, please email MRF Community Engagement Manager Cassie Beisel at cbeisel@melanoma.org and include the following information:

  • Location of your clinical trial
  • Was the trial in an academic center or community-based setting?
  • Was the trial a Novartis trial? (not a requirement, other trials are eligible)
  • Optional: to promote a diversity of perspectives, organizers are seeking patients from a wide variety of backgrounds. The following information is requested, but not required:
    • Age
    • Gender
    • Race/Ethnicity
    • Geographic location: Urban/Rural

Responses must be received by Wednesday, July 11. Selected applicants will then be contacted and connected with organizers at Novartis to arrange travel and other details for the meeting.

Thank you for helping to advance the clinical trial process and improve patient experiences and outcomes!  

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