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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Donnasue0611's picture
Replies 3
Last reply 12/30/2015 - 12:12am
Replies by: Janner, Donnasue0611

Hey guys. I'm new here. My son has had several severely atypicals removed (he's 15)...and we had another removed yesterday. I understand his. I know what to look for now and I even have pointed out several to my Derm who agreed that they needed to go. 

 

I had a mole removed that bothered me. I picked at it several times (I know bad idea)...and this last time it grew back darker and stung a bit. It also looked very few around it periodically throughout the day. My Derm said it looked okay but he always takes off what I want. It was perfectly round but was elevated. It came back as "severely atypical melanocytic hyperplasia" which my Derm says isn't melanoma or melanoma in situ...but the step before it. 

 

Many questions. What do I look for in these lesions to insure that I don't have more?  How close to melanoma is it?  Do all melanomas cause some sort of discomfort???  Or  not?

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chrisholder's picture
Replies 4
Last reply 1/4/2016 - 8:30am
Replies by: chrisholder, tbh1835, jyc

I've posted a few times, but many may not remember... Diagnosed with mm in right max. sinus in May of this year, started ipi/nivo course in June but knocked out of trial after two infusions with hepatitis, blown thyroid and long hospitalization.  Once recovered from side effects started Pembrolizumab (Keytruda) in Sept which has kept tumor confined to sinus - and no mets so far.  But since the tumor is still growing I will start aggressive radiation next week for 7 weeks while continuing Pembro to retain its benefits and to possibly gain the Rad-Vax effect (synergistic effect of dying cells being transformed by Pembro into a 'vaccine' against further cancer cell growth).  Likely will lose the sight in one eye where the tumor is encroaching, but hopefully will drastically reduce tumor size.  As many of you more experienced than I know, the side effects of the radiation will be very difficult and some likely permanent.  Would be grateful to hear from face/sinus radiation veterans about how you dealt with sores/burning/loss of salivary/loss of appetite, etc.  Thanks!  Will update as I can.  Chris

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EJJ's picture
Replies 3
Last reply 12/30/2015 - 11:30am
Replies by: davekarrie, EJJ

I am a third generation melanoma survivor in my family. Dx in 06 returned 08. My Derm. I have been seeing since 06 has retired and I am now looking for a new Derm. Those of you like me know just any old Derm won't do. Does anyone have advice on Derms. At Mayo in Rochester MN?

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On Christmas Eve I noticed a dark spot on a mole that I've had since my teen years (52 now).  It is located directly between my breasts in an area that is extremely bony.  (images attached, one is closeup--I am now horrified that the discoloration is larger than I was able to see when the photo was just saved on my phone.  Glasses, soon!)  I am having it removed at my primary physician's office tomorrow and the nurse mentioned doing a shave biopsy, rather than a punch, when I told her the location.

I just had a punch biopsy done on a the lower leg for a brand new dark spot that appeared (was atypical nevus with dysplasion--clear margins on the biopsy) and it seemed deeper than it would be possible to go on my chest without hitting bone.  

Has anyone had a punch biopsy over a bony area (chest, shoulder blade, elbow, kneecap, shin, etc.)?  

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Gwenmorgan's picture
Replies 5
Last reply 12/29/2015 - 12:04pm

So, I made it through 2 treatments of ipi/nivo and then hit the ER for a night and the hospital for a 6 day IV treatment.  Paperwork says Colitis and I am on big doses of prednisone and working on the step down now.

I am a difficult patient and a control freak so my stay was memorable for many I am sure - I pulled my IV and ran for it the first night in ER after the CT and chest Xray- why stay in ER when you can go home and wait for results- and get a bath??  Plus I have children that needed to have Christmas party stuff done for school - can't do what you need in the hospital for the holidays...Anyway, I had to convinve myself it wasn't prison and the hospital did let me go outside with an escort and I napped in the super warm December sunshine one afternoon - I had secretly escaped earlier with my IV squid and the help of a friend to make sure I wanted to ask for the freedom first...it has to be fun for me too:)

The children came to visit and tortured the nursing staff with the call button - they were trying to turn the tv on...it was quite a surprise for the nurse to see 3 kids in my bed snuggled up coloring pictures but they were very sweet to everyone.

And of course, there is still the obsession with the bugs that I think are crawling in my skin that cannot be seen - that made for a memorable night of some poor nurse searching the bed with tweezers collecting dirt and sending it to the lab.  Maybe it is the brain mets, maybe the ipi?

BEST news is the news from the Chest CT is that both lung mets are no longer measurable.  There are some swollen nodules that will be monitored but it was nice to see my personal tumor chart drop from 11 mets (brain and lungs) to 9 in the brain - some of which have been hit with cyberknife but are still hanging out.

A few weeks more for brain MRI.  I am nervous.  I want to continue the treatment.  I told Dr. Gibney and anyone else who would listen that I would rather have diarhhea forever than cancer just keep me in the program...we will have to see what they decide.  If it looks good I think he will let me stay on Nivo.  If MRI shows progression then we need some new options.  He mentioned that there is a new brain met trial starting at Lombardi and possibly WBR - but I seem to feel that is palliative only and I want something more aggressive.

I want the children to be old enough to remember what I look like, smell like, what I fussed at them about.  I want them to hear my voice as their conscious when they are older and remember their mom.  I don't want them to remember only the cancer.  I am hopeful for days when I forget that it is even here.

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marceline_queen's picture
Replies 5
Last reply 1/1/2016 - 6:58pm
Replies by: jae p, JoanieM, Anonymous, marceline_queen, stars

Hi everybody,

I'm a law student in my mid 20s, and in the midst of finals I was taking a bath and noticed the mole on my leg was bleeding slightly. I'd had it for years and always meant to get it looked at, but it seemed impossible to me that it would actually be cancerous. But I guess with the added stress of my first semester of school, it started looking pretty suspect to me. I scheduled a dermatology appointment for the week after.

This was a few weeks ago - since then, I have been diagnosed with Stage IB and I'm having surgery next week to excise the skin around the mole (it was bioposied at that first appointment) and to have a sentinel lymph node biopsy.

 

Honestly, I'm still in shock. My parents and boyfriend told me it was good I was getting it checked, but surely it wouldn't be anything- and it was! It was thin, but the mitosis rate is worringly high, thus the lymph node check.

There's only a ~10-20% chance that it's spread to my lymph nodes, but less than a month ago this wasn't a thought in my mind. I can't believe I got a cancer diagnosis. I'm trying to stay positive and figure out how/if to share this news with the people in my life, but it's incredibly surreal.

I know most of the people here probably have much more dire situations and I don't mean to dramatize what I'm going through; it's hard to keep a sense of perspective with things like this. And it's strange knowing that, even if it hasn't spread, I'll be getting skin checks every few months for the next couple years, and always worrying- at least a little. 

Anyway, I just wanted to introduce myself, and I'll report back with my results post surgery. Hope everyone is finding comfort and support this holiday season. 

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jennunicorn's picture
Replies 8
Last reply 12/31/2015 - 5:45pm

I just wanted to write a short update for anyone else who is on or will be on the Yervoy 10mg/kg dose and might be anxious about side effects. 

I had my first infusion on December 15, so it has been almost 2 weeks now. The only side effects I have delt with are fatigue, dry eyes, and eczema flare ups. I have had eczema for a long time and I get it on my fingers. Every morning since the infusion my fingers have been broken out and itchy, I have cream for it so I use that like I normally would and they are fine within an hour or so. It doesn't bother me the rest of the day.

Being tired a lot kind of sucks, but it is definitely manageable. It has gotten better since the first week, I'm not as exhausted throughout the day.

Dry eyes is something I didn't really know about beforehand. My oncologist said it is something she hears frequently from patients on Yervoy. She advised me to get moisturizing eye drops and use them when needed. Those definitely help.

Overall, it has been fairly easy so far. The next infusion is January 5th, keeping my fingers crossed for continuing manageable side effects.

Best wishes to all,

Jenn

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Beehappy's picture
Replies 1
Last reply 12/27/2015 - 1:57pm
Replies by: geriakt

My husband (3c, 43yrs) has been on the ipi vs nivo trial for a little over 3 months.  All seemed to be going well and he completed the 4 possible ipi doses last month.  He has been only on the possible novo for the past month.  

He was doing well - only suffering constipation issues, hemmeroids and fatigue until the last 3 weeks - his mood has changed drastically and recently his arm has begun to swell and turn purpleish (from shoulder to finger tips).  We ended up in the ER yesterday because we were on a trip and the on-call doctor wanted him to be evaluated for blood clot possibility (because of the swelling, we were afraid to fly 3 hours home.  No blood clots were found and no one can tell us why this swelling is occurring.  It comes and goes randomly but his arm never fully goes back to "normal".  This is his "good" arm - the other arm is the site of the lymph node removal.  The side that is swelling is, however the side that has the port.

He is not dealing with this very well.  I believe the drugs are impacting his ability to handle things appropriately so I am here trying to figure out if anyone has heard of this arm swelling as a side effect?  If so, is it temporary or permanent?  

I am grateful he is getting treatment, but it seems the docs are sometimes as clueless about the side effects as we are.  They just don't seem to get the amount of fear and disruption this can have on daily life or a family system.

The weary wife of a warrior.....

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blastr11's picture
Replies 3
Last reply 12/28/2015 - 9:37am
Replies by: Anonymous, geriakt, gregor913

Hi all, I have just joined the MRF and have started reading some in the forum. I am stage 3c, diagnosed on Oct 13th of this year. My tumor looked nothing like Melanoma. It is called Amelonotic as it had no pigment or color to it. I waited a long time to have it checked. It was 5mm external, 8mm internal with cells found in 4 lymph nodes under my arm. I was sent by my Oncologist for a brain scan immediately, it was clear, thank God. I had to wait some time before my PET to let my surgical area heal. My PET was clear, thank God.

I now have started ipi in the 10mg/kg dose as it was approved for stage 3 by FDA 15 days after my diagnosis.I have had one treatment and the next one is due in 3 days. My side effects have mostly been fatigue up until the past week. The itching and rash has progressively been getting worse.

I was looking to see if anyone else may be at my stage and be using the ipi as their treatment.

God bless you all......Mike

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/7/2016 - 8:01pm
Replies by: Anonymous, ldub

Christmas night going to bed at my in laws I walked by a mirror and noticed a dark spot on the back of my arm. It looked like someone got me with a sharpie marker. I tried to wipe it off. I realized it wasn't coming off. I looked at it closer and it is a black, slightly raised, mole. I have never had a mole in this location. It is a new mole.  I have no moles that look anything close to the color black on my body. I haven't measured it yet, but it is bigger than a pencil point, maybe between 2 and 3 mm.  

I am out of state and will be visiting with my PC and a dermatologist when I return home next week. I don't think I would've noticed this had I not been at my in laws, the mirrors in my bathrooms are much higher than theirs.

Has anyone's melanoma stared out as a small new black mole? Could you share your story, or link me to a story already in the forum. 

Thanks.

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jamieth29's picture
Replies 21
Last reply 1/9/2016 - 10:33pm

Just wanted to thank everyone here for the immense information and support everyone gives. After being on the braf drugs for about 4 months and using them for as a sort of neo adjuvant I'm going for surgery dec 30th at university of Chicago. I will have a resection of my leg where I've had many intransit spots but confined to about a 4 inch area. I am also laproscopic surgery to my iliac area to clear some lymph nodes out of that area. I had one external iliac node show up on pet and ct enlarged to 18mm. The drugs reduced it to 7mm and that was on my sept ct scan. The spots on my leg also disappeared. Hopefully pathology shows necrotic tissue. I'm nervous to say the least but also know i have to get through this and see what happens. The plan is to stop drugs after surgery and see if it comes back. I am going to look for some kind of trial. Not sure what yet but might be a vaccine trial. The last four months have been almost normal going back to my carpentry job and having 0 side effects from drugs. I'm really nervous about lymphedema but if i get it i will cross that bridge when i get there. Also nervous for the kids seeing me in the hospital again. I will be inpatient for a full week through new years so that sucks. Be kind of interesting to see how this approach works. Doctor says i will still be stage 3c after surgery and if all goes according to plan 3c ned so finding a trial will be a challenge. I do believe right now the drugs have rendered me ned. Anyway have a beer for me on new years. Hope everyone enjoyed Christmas. I'll update with path results after i get motivated after this surgery. Doctors are saying 6-8 weeks till I'm fully recovered so I'm setting my sights on 5 weeks just cause i like proving something to myself. Take care everyone.
Jamie

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Scooby123's picture
Replies 7
Last reply 12/29/2015 - 11:12am

Hi everyone first I would like to wish all of you a Merry Christmas. Hoping we can forget this horrible disease for a few days.

After the sadly pass of Artie I seem to have felt so down and then another one of our family friends young lady with children has too passed away with cancer. She battled ten years god bless her. I just feel so sad and cannot stop thinking of what next.

my tumours are in my liver, lungs  3 in liver 1 in each lung and I believe in lymph nodes , been on ippi with good results had scan results still no change stable no activity in brain. Was going today Christmas Eve to get results but my consultant kindly called me yesterday with results. I am so pleased for that but feel sad. I am braf negative so not got much choice in treatments so glad ipi worked. I do not understand that they will not give me maintance dose of ipi if it worked well . I was told PD1 next but due to me not having much choice why not give me top up of ippi . People who did well on trials on ippi got top up of treatment and did very well. Feel like it is all to do with cost of treatment here in Uk not that am young and healthy at moment to take more treatment so why not give it. I had not much side effects apart from itchy and bowle movements but not too bad.

well sorry for the moan but just feeling like this at present, am still working and doing things as normal 

Love too you all and God Bless us xx

scooby❤️❤️

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/23/2015 - 11:04pm
Replies by: Janner

I'm 20 years old and have pretty dreadful anxiety about my health which really stresses me out. A couple of weeks ago I noticed a mole on my thigh that I thought looked weird, it was a bit lumpy and itched from time to time. I went to see a doctor who inspected it closely and said it looked harmles, but to come back if it changes or starts to hurt or bleed at all. Fine! Problem solved!

Except, yesterday, I remembered a mole on the back of my 18 year old brother's neck, which is a bit large. It's not colossal or anything, perhaps marginally bigger than the pencil eraser which seems to get mentioned as a good reference point. But, still, it's freaked me out. It looks completely normal apart from that, in terms of colour and symmetry and what have you, and obviously it's not my body so I can't say whether he's feeling any itching or pain with it. I know this isn't the place for a diagnosis, but should I be so panicked? Because right now I am so so panicked. I feel like on the one hand, it would be a bizarre coincidence if I got so terrified of skin cancer, turned out not to have it, but then two weeks later found out my brother did all along; it seems more likely that the fear is still gnawing at me and making me get too agitated about a normal thing. But, also, if a mole's bigger than a pencil eraser, you have to get it checked out, don't you? Even if it's only slightly bigger? So, should I point out to him that he should get checked? I don't think he even knows what a melanoma is, so I feel like it's my responsibility, but equally, I don't want to come off as a paranoid weirdo who orders him off to the doctor for no reason. I shouldn't be getting so distressed about this...

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Lucky242's picture
Replies 5
Last reply 12/25/2015 - 7:56pm
Replies by: Patina, Lucky242, Bubbles

Forum - does anyone have advice on combining immunotherapy with BRAF/mek pills? 

Brief background: my mom was diagnosed with brain & body mets Oct 2014. She was on the Taf/Mek combo for 6 months and Taf alone for a further 6 months. Targeted therapy was a great success, reducing tumors in body & brain significantly. The therapy was reduced to half a dose of Tafinlar, when she was put on nivolumab 6 months ago. In Nov, her onc stopped BRAF/mek and added ipilimumab to the mix, when scans showed activity in her lymphs. He has confirmed that she is essentially on the ipi/nivo combo as both immunos are in her system. Her second infusion of ipilimumab was last Thurs (Dec 17th). Since starting ipi, we have seen drastic and consistent rise in LDH. 

Yesterday, my mom had pleural effusion and a trip to the ER produced a new set of CTs, which showed new tumors in brain and body. We were told by hospital doctors that the situation is serious.

Tomorrow, we meet with her onc in charge (a great melanoma specialist). As a family, we question if its too soon to call the verdict on ipi working/not working. My dad has a gut feeling that a second-go on targeted therapy can kick melanoma butt again, as the disease never progressed when mek was included in the picture.

In a perfect world, we continue with ipi treatments 3 & 4 and add in some BRAF/meks. Her onc has warned us of the toxicity of combining this many treatments...does anyone have experience with resuming targeted therapy after progression on them? And in conjunction with multiple immunotherapies in the body? ANY input, whether it's links to articles, personal experiences, would be invaluable, on evidence of combining ipi/nivo combo with BRAF/mek inhibitors. 

THANK YOU (and happy holidays!) 

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Eileensulliv's picture
Replies 15
Last reply 1/8/2016 - 9:14pm

At my appointment last week, my doctor said my latest CT scans were better than stable... He said the nodule in my lung is so much less conspicuous that it is opaque and hardly noticeable... Confident the cancer is gone, and the same goes for the cancer that was in nodes in my mesenteric bowel... The nodes are all back to normal size if not even a bit smaller than normal. He said this was an excellent scan and that he is confident in saying there is no evidence of disease! 

So the plan is to continue on nivo, complete the two years (March 2017!). Some have said the full two years isn't necessary, but if it helps with a durable, longer lasting response, I certainly don't mind the treatments! I still work 40 hours/week, and live my life with minimal side effects! 

Needless to say, I couldn't be happier right now! I'm so thrilled... Christmas came early for me this year!

On a side note, I will be participating in the Advocacy and Summit Hill day for the MRF in March. Will I have the pleasure of meeting any of you in DC in March?

Eileen 

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