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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Anonymous's picture
Anonymous
Replies 5
Last reply 8/8/2016 - 9:53am
Replies by: Racetraxx1, jennunicorn, Anonymous, youngann

I have two moles on my face that bother me. No derm has ever told me to get them off but everytime I look at them I get anxiety.  I play several outdoor sports and my face is always in the sun and sometimes im not wearing sunscreen so I'm always worried about these two moles going haywire?  I have never had melanoma but did have 1 atypical mole removed years ago and it was the Lowest level.  The one mole is on my temple and I have always had it. It is about 4mm. The other appeared on the bridge of my nose after a golf trip in 2011.  It is dark, tiny,maybe 2mm but shaped like a lightining bolt which I thought was odd but several derms viewed it over the years and said nothinh.   My question is do you think it's prudent to remove these moles and if so what's the best way to minimize scaring ? 

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/10/2016 - 5:26pm
Replies by: Vas, debwray, SABKLYN

Hello , in April I noticed a 2mm black mole on my lower bicep, nothing irregular other then the color,  black as all my other moles are brown. Both my family doctor and dermatologist said to observe it and if it grows to remove and biopsy,  but since I didn't like the color I had the mole removed and sent to lab. This is what they said..

 "atypical compound melanocytic proliferation,  extending to the base of the specimen and very close to the peripheral edges.  NOTE: THIS LESION shows some features of a compound melanocytic nevus with architectural disorder and cytologic atypia of melanocytes (dysplastic nevus) as well as overlapping features of a pigmented Spitzoid proliferation/neoplasm. Atipical findings also include focally prominent pagetoid migration that be be related to prior trauma, however, an evolving higher grade lesion / melanoma cannot be excluded with certainty. A recent excision is recommended to ensure the entire lesion has been removed and for further evaluation of any remaining lesion.

 I'm confused as even my dermatologist couldn't fully explain to me what this means , I had WLE done on Monday and waiting for my results anxiously I might add! 
 
What I can't figure out is , is it DN AND if so mild , moderate , or severe? It's very confusing as because they do mention melanoma in the report.  Any input would be appreciated ! Thanks
 
Vas
 

 

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Aubreesmommy41's picture
Replies 9
Last reply 8/9/2016 - 10:32pm

Can someone look at this scar on my arm and notice the little brown streak on the left end side? Also there are no pea sized lumps I've read about but it feels just a little lumpy when you run your fingers across it. I had it done on April 6th of this year for a .40 mm melanoma.. Supposedly clear margins. Path report says pt1a. Should I be worried this is a recurrence? I can't tell if it's the lumps people talk about or just normal healing scar tissue. Scared.. I have a 6 month old baby. :(

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LizaC's picture
Replies 24
Last reply 8/10/2016 - 2:15pm
Replies by: WITom, LizaC, MoiraM, Gene_S, Ed Williams, Bubbles, Anonymous

My partner is stage IV, braf positive, no primary was found. Diagnosed August 2014, 2 years ago. She's been on brafi combo and Keytruda, Responded to both, brafi for 12 mths with 98% tumour reduction. Pembrolizumab for 3 months, due to aggressive Mel in her bone marrow as a consequence of brafi resistance. Keytruda saved her life in January and got rid of all Mel from the bone marrow but not much else. She went back on the brafi 2 months ago, half dose due to side effects and got a mixed response, not enough response as mel has continued to progress, no longer on brafi. Had internal radiation for liver 3 weeks ago, hysterectomy 8 weeks ago, including removal of 2 masses (which were NOT Melanoma, but sarcoma!) Like many of you, been through it all.

She starts IPI next week with radiation.

For those of you that have responded to IPI (be it partial or complete response,
I'm VERY interested in the following information:

-Braf status
-Treatments pre IPI
-deposit areas
-know the Immunohistochemical
stains for melanocytes after biopsy. Eg. SMA s100, melan-a, HMB-45..

We will continue to fight this insidious diease. Blessings to you all..

Thank you,
Regards
Liza

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Joycem's picture
Replies 8
Last reply 8/9/2016 - 2:54pm
Replies by: jbronicki, Joycem, landlover, Anonymous

Hello,Newbie here,  

I had WLE/SLNB for nodular melanoma diagnosed a couple weeks ago when I went to dermatologist for first time to remove a pink skin colored eraser sized bump from upper arm, really for cosmetic reasons. My primary care had looked at it years ago (I hugely underutilized health care until now, despite being a pharmacist, guess that finally caught up with me) and said it was fibroma, nothing to worry about, and maybe it was then (I hope..)

I had grown tired of not wearing anything sleeveless and decided to pay to have it removed even if not covered. 

Saw CNP, she shaved it off out of office in < 30 minutes... Cool. She called me with biopsy report...not cool. Referred to melanoma clinic at Steidman Cancer Center in CLE, couple Dr. /location switches due to insurance issues, concerning but seems ok so far.

Been studying up, (yikes) waiting for appts etc. and appreciate all the shared experiences here already. Valor, generosity kindness and wisdom abound. 

 I found the procedure day today much less unpleasant than anticipated. Indeed the anticipation/dread so far much worse than reality.  Little pain, but curiously wakeful tonight. 10/10 A+ to all staff I encountered at St. John's Med Center, from pre admission to transport to nuclear tech to surgery to recovery. 

Suggestions for dealing with the wait time for results? My mind wants to run ahead with so many ifs and thens, but I feel like it's a bad idea to go down all these mental rabbit trails until I need to. (A little knowledge can be a dangerous thing) 

 

 

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BrianP's picture
Replies 16
Last reply 8/11/2016 - 7:52am

Last week I was in efforts to return to my pre-melanoma flying career and purchase a house.  That all changed Tuesday when I got the result back from my latest scan.  After two years of stability and one year off treatment it looks as if my melanoma is on the move again.  To say this sucks doesn't do it justice.  I'm still having a hard time believing it. 

Meeting with Dr. Weber tomorrow to discuss options.  The obvious choice is to restart nivo and hope it picks up right where it left off.  Burning the midnight oil on Trialsl.  I might have some challenges with some of the various trial prerequisites.  Fortuntely right now I only have two small nodes grouped together so having a biopsy and a marker tumor may be difficult if that's a requirement.  If anyone has any idea on trials let me know.  I really like the sound of Josh's trial but again not sure if I would qualify.

Sorry to be a Debbie Downer.  I know anytime there's news like this we all feel a little more vulnerable.  At first I was a pretty down but I'm starting to get the fighting spirit back.  I'll let you know what Dr. Weber says tomorrow.

Brian

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Aaron's picture
Replies 7
Last reply 8/10/2016 - 7:12pm
Replies by: BrianP, Ed Williams, KAF, Aaron

Well I guess it's my turn for an mri. I am on the ipi/nivo combo and scheduled to have my fourth treatment next Tuesday. During my third treatment I had a reaction where I broke out in hives during treatment. The about 5-6 days after treatment I developed a low grade fever (99.8) that lasted about 5 days and my forearms were sensitive/sore to the touch. Following my fever days I developed a low grade headache that is barely noticeable but has never gone away. I am now 10 days into this headache roughly and now have a MRI scheduled before my next appt this coming Tuesday. I am sure it is a pituitary issue or something of that sort and am remaining positive that this is is a sign that things are working in my favor.  Just hate that this will probably delay my next treatment as I was hoping to have all 4 done before school/work started back up this fall and would only have the nivo component to deal with. All in good time though. 

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Replies by: gazzz, Ed Williams

has anyone encountered this? When I began Tafinlar + Dabrafinab I did get a slight fever couple of days, but now that I have ceased taking them (after 19 month) I get this fever, particularly at night (and chills of course). It commenced as soon as I came off, and my doc assures my it cannot yet be a side effect of going on to immunotherapy.

 

Thanks

Gazz

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/4/2016 - 11:43am
Replies by: jennunicorn

I have some questions about screening for melanoma.  I want to start by saying I always have been anxious about my health and as of late Melanoma has worried me.   Melanoma does not run in my family.  I have dark hair and somewhat dark skin but at 35 I never wore sunscreen and this has me bothered.  I had a few decent sun burns growing up but they were rare.   My main concern is that I have a good deal of moles on my body. They are pretty tiny but I worry about them.   I have been to several dermatologists and none of them have ever used a dermascope on me. 

I went to the University of Penn and expressed my concern with them.   The first doctor examined my moles by eye and said everything looked good.  He then went out and brought a team of doctors in and they examined me again.  They said everything looked good.  I asked them all about using a dermascope and they said it was not necessary.  I asked them about mole mapping and they said that I did not need it.  

The doctor told me to come back in a year and that ultimatly I was low risk for melanoma.  I reminded him of my sun exposure and use of tanning beds when I was in college and he said that raises your risk slightly but more than likely you will never see melanoma.  I then asked him about the number of moles I probably have about 150 tiny ones putting me at a higher risk and he said again this raised your risk minimally.  He said he sees people with way more moles than me and most of them will never see melanoma. 

This board is very knowledgable and I wanted to see if this was accurate ?  Thank you for your time.

 

 

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Shaneswife's picture
Replies 7
Last reply 8/11/2016 - 7:58pm

Hello. Curious if anyone here is in the trial on interferon or ipilimumab vs. Prembrolizmumab? We are considering this trial for my husband once he's 4 weeks out from his clnd. Looking for feedback about the trial experience.

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Christine.P's picture
Replies 6
Last reply 8/5/2016 - 5:00pm

Long story short, I am stage 4A (primary tumor on left elbow that spread to lymph nodes in armpit and into breast and sternum and 2nd primary in right leg/ lower calf that required a skin graft.) Just had my 3rd dose of ipi/nivo today. A PET scan in May found a new tumor (4mm) above the 2nd primary site in my leg and biopsy confirmed melanoma.

My most recent PET scan (July 30) showed the tumor in my leg is now 7mm and there is an enlarged lymph node in my left groin. I will be having the tumor in my right leg removed soon but I have a question about the left groin.

First, can melanoma appear in the left groin with the closest primary tumor being in the left elbow? My doctor doesn't think it can be melanoma because there is no primary tumor near my left groin. We are doing an ultrasound and posstible biopsy just to be safe. 

Next, how does the ultrasound determine if a biopsy is needed? 

I am not stressing about these procedures, but I cannot find any information on if the lymph node that lit up in my left groin on the PET scan could be melanoma. I realize it could just be inflamed, but I just want to know if it is even possible it could be melanoma that far from the 2 primary sites. 

Also - does anyone know what the radiologist needs to see in an ultrasound to suspect cancer and go ahead with the biopsy? I just like to know what he/she will be looking for. 

Thank you for any info you all may be able to provide. I tried looking for info but I am tired and my  brain is not sharp right now and I just need some help. 

Christine P. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/5/2016 - 10:55am
Replies by: momof4boys, slh4448, BrianP

Folks!

 

any thoughts on clinical trials ?

- How can you find one?

- Should be worried about joining one?

Anyone joined a CT before?

 

Thanks

Karim Galil, MD

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Kare83's picture
Replies 4
Last reply 8/14/2016 - 4:03am
Replies by: Kare83, gazzz, JoshF

On my initial path report it says

"There is a moderate lymphocytic inflammatory infiltrate, consistent with a component of regression."

Looking up regression, from what I can tell this is good as it  means the immune system had identified the malignant cells as bad and go about destroying them, right?

Although I have stumbled across a page to help understand Melanoma Path reports and it says that regression can make it hard to work out how extensive the Melanoma was before regression occured. 

Also.. it was a very thin Melanoma, I know, but it states that there was focal invasion of the papillary dermis (0.40mm breslow), and in the wider excision got everything though I am slightly freaking out thinking about blood vessels and things that could help it travel... Is this why they say it can turn up in the lymph nodes later on? Because no one can really be sure if they got it all out?

I feel so bad I shouldn't be falling apart over this when others are really fighting this disease and I hope I am no offending anyone but I just have these bouts of anxiety over it that I can't control. Some days I am fine and others I just lose it! I guess the main positive is that it has made me very aware of covering up moreso and looking after my skin... carrying out monthly skin checks and taking photos of moles to monitor change. I just hate what it does to you mentally!

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Ajwells's picture
Replies 5
Last reply 8/4/2016 - 4:10am

I read a lot about Yervoy on this forum. I see mostly "I didn't have any side effects" or "my side effects didn't start until the 3rd infusion". 

To be upfront this is adjuvant treatment.  And a lot of what I could find are older articles from like 2011 during clinical trials  

As I lay here a week after my first infusion SO tired. Bone tired. I have yet to make it through a 4 hour shift at work. 

I looked up drug interactions because I'm on a lot of psych meds (Lamictal, Effexor, Buspar, Trazodone) and I didn't find anything, I guess I should trust my oncologist to know. 

I'm trying to eat healthy, drink plenty of water. My appitite is decreased, but it has been decreased for long before the melanoma came along. 

I feel like a pansy. How am I going to take the rest of the treatments when I'm already over it?  I can't take care of 3 kids, work my job, and feel sick all of the time. 

I made the choice along with my doctor to do the treatment because cancer and recurrence run rampant in my family and I'm too damn young and have too much to live for to play games. So I've got to either figure out what to do to deal with the side effects or I need to get less on my plate. 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/2/2016 - 7:48pm
Replies by: Anonymous, Polymath

I was diagnosed in March with stage 4 melanoma to the lymph nodes, stomach, bone and lungs.  I have done 3 ipi-nivo treatments and 1 nivo treatment.  I didn't get all four of the ipi-nivo combo because the side effects were too severe. My last treatment was on July 1st and that was the nivo only treatment. Since then I have been on steroids for colitis.  I'm not sure when my next treatment will be but oncologist hopes it will be soon. My last PET scan on July 13th showed almost a complete response.  There are still tumors left but they are so small they don't show up on the scan.  The lump under my left armpit is not gone completely but has shrunken a lot. The oncologist told me its probably dead tissue. What I'm wondering is that once the treatment is complete, do they remove the lymph nodes where the cancer first spread too? Or is this something they only do when someone is stage 3? I'm just not sure how much more the one under my arm is going to shrink.  Just a little confused.

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