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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Patrisa's picture
Replies 2
Last reply 4/4/2016 - 11:23am
Replies by: kpcollins31, geriakt

Hey guys...

 

I just registered, but i have been following your stories for quite some time now..... It really helped me, knowing that we (my fater to be precise) are not alone.....

 

My fathers story began on October 2012, when he felt an itch and began to scratch his back like a mad man... I took a look at it and saw a black mole on top of his excisting (don t know how to say it in english) "growth" he has had his entire life.. He went to check it out and dermatoligist said it was basal cell carcinoma, nothing to really worry about.... Well, it turned out to be melanoma.....

We were so shocked, we knew nothing about the disease, except that it was deadly.... The surgeon went it the sencond time and did a wider excision, along with taking the sentinel node, which came back positive, and after that the removed all the limph nodes from his armpit which were all negative..... His stage at the time III3

He then went on Interferon and managed to take it for the whole 12 months (first month was brutal) and every doctors visit after then was OK. I have to mention that every visit to the doctors was just S -100 check and phisical exam... Nothing else....

Well, ffwd, last summer I noticed a bump on his back, fairly close to his original place of melanoma and i freaked out... He went to see a dermatologist and they assured him it was ateroma and scheduled him for operation 6 months from then....  I was kind of releived, but in the back of my mind i always thought it might be melanoma.... In november 2015 he had his regular checkup at the oncologysts and he did a biopsy, just to be on the safe side (he said its probably ateroma) and it came back posivite.... After CT, we realized he had mets in his lungs and were devestated.... We knew nothing about new treatments, just poor statistics for chemo and thats it....

BUT, luckily, he is not that old and doctors offered KEYTRUDA.... that was the first time we ever heard of it and of course we took it....

He started Keytruda on Jan, 25 this year and today received his 4th dose.... His blood works are excellent, his biggest tumor (5x5cm) is at least 70% gone, and the smaller one dissapeared..... His first CT will be in a couple of weeks, but we are quite optimistic that the lungs could be cleared too.....

I have to say that he s a real truper, positive, goes hiking every day, easts 90% healthy, drinks aronia juice every day and has no side effects of Keytruda.....

He is just a little anqsious about excercise, he thinks getting a lot of oxigene to the body, on the one side helps, but helps cancer cells to live too? What do you guys think? To excercise or not?

Thank you for beeing such a wonderful place, where one can come and really feel at home and somewhat hopeful.... Many of us come here and never post, but we cheer for each and every one of you!!!!

 

P.S. I apologize for my not so perfect English, but i know all you wonderful people don t really mind... :-)))) 

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Anonymous's picture
Anonymous
Replies 12
Last reply 4/3/2016 - 10:45pm
Replies by: Maria C, Anonymous, Scooby123, Janner

Hello! 

 

My mother was diganosed last year with vaginal melanoma.  Had surgery, tried that chemo combo cisplatin/temodar, but it really messed her bloodwork up, so she had to stop.  We just found out it has returned in several places.  We do know that she is NRAS positive, but Braf negative.  Trying to do a brief eduation for myself before we go to her appointment tomorrow.  I want to be fully prepared!

My question is this, becasue she is BRAF negative, would she be able to take Keytruda? Or is that not an option because BRAF negative? 

Any information would be helpful!

Thank you!

 

 

 

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Replies by: jennunicorn

So I had a mole removed in November as I was suspicious of it and around that time I noticed a mole on the sole of my foot but it didn't look too suspious at the time. Recently I found another mole, a new mole on my foreskin(awkward) so I've been monitering it. As I was researching I came across the type of Melanoma that appears on the foot and it reminded me of the one I had on my foot. I decided to take some close up pictures of the one on my foot and I litrally couldn't breathe, it looks very suspious to me and I'm really starting to worry because of how long I've left it. I don't know how long it's been there overall.

 

I measured it and it's around 2-3mm.

 

Here's images hopefully soemone has some insite. I'm going to the doctors monday to get them to refer me to a derm. 

 

http://imagizer.imageshack.us/v2/1024x768q90/922/FeiUDp.png

 
 
 
 

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Bobman's picture
Replies 10
Last reply 4/3/2016 - 12:44pm
Replies by: desertsun, Bobman, Anonymous, DZnDef, Janner, JuTMSY4

I will have the sutures  removed this Monday  from primaries  8,and 9. Primary  number  7 was just a few weeks  earlier .  In the meantime,  I have several  new lesions  popping  up all over. Forehead , neck,back,legs,and abdomen . They all look as funky as can be...a few dark as coal. Even among my sea of a typicals the new ones stand out. I saw my primary  care nurse practitioner  on Monday ,who helps with biopsies  between  visits to the dermatologist .  I told her I  am now experiencing  fatigue  like I have never known .  She asked me what the oncologist  wanted to do,and I explained  that he said nothing  he could  offer until I reached  a different  stage. He did send me for a pet/CT scan  a couple  of years  ago when I was on about my 4th,or 5th primary , combined  at that time, with put me on the floor pelvic bowl  pain. I lit up both scans in exactly  the same area  of my pain. Was scoped front and back,with nothing  found,and in general  have only experienced  that same pain a few times since. She suggested  another  pet scan now.

I am totally  confused  as what to do here. Technically  I  am still stage 1,but something  is definitely  going on. I've  only  been  on this road for 5 ,or 6 years  now but the changes  on my body  are speeding  up. If I had Mets to anywhere  would  I  still  be throwing  out all these InSitu , and stage 1 lesions ?  My surgeon  actually  said to me after primary  number  7 that I was a ticking  time bomb. I actually  appreciated  the comment , as it seemed  real,and mirrored my thinking . Then a week  later we were  at it again , and most  likely  it's going  to be repeated  in a couple  of  weeks . .....wtf ?

Appreciate  any thoughts  on this you all may have.

Aloha , 

Bob

We are one.

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mary1233's picture
Replies 2
Last reply 4/3/2016 - 12:37pm
Replies by: Maria C, Scooby123
DragonLadyRed's picture
Replies 2
Last reply 4/3/2016 - 12:10pm
Replies by: DragonLadyRed, Janner

Background: I was diagnosed with a melanoma in situ at age 18 (I'm 31 now) and have had many biopsies of atypical moles since, with all coming back mild to moderately atypical. None were particularly concerning to me, but my doc would point them out and opt to biopsy because of my history. 

A little over a week ago I was doing a skin check and noticed a small, very dark spot on my back. I reached back and tried to scratch it, thinking maybe it was a tick (it's getting to be that time of year here), but it wasn't. The rest of my moles are a medium brown color, so it really stood out. I pulled up a picture of my back from a few months prior, and the spot wasn't there in the picture. Luckily, I already had my annual skin check scheduled for the next day. My doctor assured me it didn't look problematic, but since it concerned me and I couldn't watch it closely with it being on my back, she removed it. 

I got a call a few days later from the nurse saying, "It's not cancer, but we want to re-excise. Your doctor can't see you for a month, so we're going to get you in with someone else." I said I was fine waiting for my doctor and preferred to see her, but they insisted I not wait that long. Which, of course, worried me, so I requested my pathology report. Results are as follows:

Diagnosis: junctional dysplastic nevus with severe atypia

Comment: H+E stained sections show a small highly atypical junctional melanocytic neoplasm with an increase in bridging of large, hyperchromatic junctional melanocytes with an increase in single cell melanocytes. The MITF immunostain shows a central focus of pagetoid spread. The neoplasm is not broad in nature and is not identified at margin, however, complete re-excision with a margin of normal skin is recommended. 

So this just means that's it's just an atypical mole and that after re-excision there's nothing to worry about, right? 

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WithinMySkin's picture
Replies 14
Last reply 4/2/2016 - 7:58pm

Hello friends and fellow warriors! My onc just threw me a serious curveball, and I would love your input. 

Quick history: April 2015 diagnosed stage IIIB, 2.1mm primary on thigh, >2 mitosis, BRAF+, with ulceration.  SLNB positive 1/2 nodes. Decided to watch and wait. 

November 2015 found In-transit on leg. Stage IIIC. CLND showed 6/30 nodes positive, 2 "grossly positive" with extracapsular extension. Started Sylatron. 

March scan showed 2 possible in-transits on same leg, everything else clear. Watching the in-transits. 

So I've been watching the in-transits, and one has been growing. Just met with the Onc, thinking of dropping the Sylatron and going to Ipi at 10 mg. (Because clearly, the Sylatron isn't doing its job). But he really shocked me when he said we COULD leave the in-transits and go to the Ipi/Anti-PD-1 combo. I get the jist that he is being extremely liberal with the phrase "unresected" stage III, and giving me a balls-to-the-wall option. I clearly hadn't though of this as a treatment option, because I've only had leg and nearby node involvement so far, so this is a whole new world for me. 

SO, what to do?!? My options: 1- have the in-transits resected and go back to watch and wait. 2- go to Ipi 10 mg and have the in-transit resected 3- leave the in-transits, and go guns a blazing with the Ipi/Anti-PD-1 combo. Clearly, the side effect profile for the combo will be greater than the Ipi alone, and greater still than the watch and wait. I currently don't have any distant mets, and I'm still classified as IIIC, but clearly my Mel is knocking, and 6/30 nodes aren't good odds. I think the Onc is leaning towards being aggressive due to the pathology of my case. I'd love to get ahead of the beast, but is it OK to jump to the combo?!

This is a big fork in the road, and a big decision. Any and all input you all have, I'd greatly appreciate! Hope you are all kicking melanoma tail! 

Lauren

WithinMySkin

www.Withinmyskin.com

 

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Scooby123's picture
Replies 14
Last reply 4/2/2016 - 5:19pm

Today I went to see a specialist in Gamma Knife. I was very nervous and not been sleeping very well since told I had a spot on brain. 

I saw 3 different nurses who explained every thing in detail which made me feel more confident in the treatment.

The specialist showed me my scan of my brain and where it was he said its small but I could see it clearly. It is located at the back of my brain on the right side. He did say that this treatment is good for tumours which are small. He also said when I have my MRI on Monday before treatment if there is any more they would also treat but praying there is not.

There has been no mention on me starting keydruda  after this , I did ask my nurse she said that due to me stable eles where and just this on brain this treatment is best to treat it and save keydruda for when I need it. I am Brad negative.

Do you guys think this is what you would do , the only thing worries me if more pop up on brain but I will have scans every 3 months but like some a lot can happen in 3 months as we all know.

will have to pray it does not develop any more on brain

hope you all ok and had a lovely Easter break.

scooby123❤️

 

 

 

 

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jennunicorn's picture
Replies 31
Last reply 4/2/2016 - 12:28pm

Got my scan results this morning..

Good news: no mets in distant organs. Yay!

Inconclusive news: lymph nodes in my neck, one in my left armpit and one in my left groin lit up. My oncologist is sure the neck ones lit up from a cold that I had a couple of weeks ago. She's not sure why one lit up in my armpit, maybe also related to the cold. The groin one is most concerning since it is the area that I had my SLNB in which 3 nodes removed had melanoma. 

So, tomorrow my oncologist will be going over all of this with the tumor review board to see what to do next. If they feel it is concerning enough and they are able to get a needle in the nodes to check for melanoma then they might do that. Or, I might just get another scan sooner than planned. I would normally have another scan in 12 weeks, and now might have another in 6 weeks to check on everything.

Has any other stage 3 folks had a similar experience?

I'm relieved that it's not terrible news. Of course, it isn't fun not really knowing why certain lymph nodes decided to light up. 

Thank you to everyone for their positive thoughts while I was having my scanxiety! 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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mkirkland's picture
Replies 6
Last reply 4/1/2016 - 9:50am

Does anyone know how long this drug stays in your system once you have finished treatment? 

Thanks! 

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gcooperbl's picture
Replies 7
Last reply 4/1/2016 - 8:19am

So my dad got very bad news today....Pembro failed after three doses and it has spread to spine and gotten worse in brain. Doctor doesn't think Pembro will do anymore good, and it's having a bad effect on his body. He didn't even recommend chemo, we are devastated and we don't what to do. Palliative care I guess and make his last few months a joyful one. 

i hate this disease I hate it so much but we must continue to fight it and keep up the research

 

 

 

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OzzieK's picture
Replies 5
Last reply 3/31/2016 - 10:47pm

In the beginning of 2014 I reached out to this board for help after my then vibrant and active 69 year old dad was diagnosed with stage 3 melanoma after having a nodular growth removed from his back. After a wide local excision and the removal of several infected lymph nodes from his arm pit, the melanoma returned just several inches away from where the original growth had been. We knew it was very aggressive.

At that point and after much research and consultation, my dad began seeing a melanoma specialist in Los Angeles. With a new aggressive growth on his back, his doctor had the green light to immediately start him on Yervoy. The results came quickly and the growth began to shrink after the second dose. Unfortunately, following the third dose my dad began to experience severe diarrhea. He was immediately taken off the Yervoy and started on a short course of antibiotics.

At this point, some decisions had to be made. His doctor was involved in clinical trials for anti-PD1 (still months away from FDA approval), but my dad was not eligible.You see, a couple of years before he had been diagnosed with stage 1 LLC (chronic lymphocytic leukemia) during a routine blood test as part of an annual physical. While he had no symptoms of this disease and was seemingly not impacted by it in any way, he was still disqualified from being a candidate for any melanoma clinical trials. It was also discovered that the LLC may have weakened his immune system just enough to allow the melanoma to develop.

Because the FDA was very close to approving anti-PD1 and because my dad was not eligible for clinical trials, his doctor was able to start him on the drug as part of a program that allowed those otherwise disqualified from clinical trials to still receive the medication. Almost immediately, the growth on his back (which had grown very large at this point) began to melt away and eventually disappeared completely.

Fast forward to present day. My dad has been receiving 3mg of anti-PD1 infusions - now Keytruda - every 3 weeks for almost 2 years. He just had his 6 months scans and he is still NED. This summer, his doctor feels comfortable taking him off the Keytruda. During his time on Keytruda, with the exception of a loss of his thyroid function (easily treated with one pill a day), he has had NO side effects from the drug. He continues to bike, play tennis, and carry on with the active life he had prior to the melanoma diagnosis. Remarkably, there is also no sign of his LLC on blood tests!

I'm sharing my story now because I want to give others hope that positive outcomes are very real and very possible. The advancements in melanoma treatment have been nothing short of miraculous and they just continue to get better and better. Educating yourself to what's out there and working with specialists in the field who are at the forefront of melanoma research is absolutely key. No one knows what the future holds, but this much is true - advanced melanoma is closer and closer to becoming a manageable chronic illness and, quite possibly, an eradicated one.

 

 

 

 

 


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Battling low platelets since chemo, anyone know if Keytruda could be admininstered if low?  

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Replies by: Anonymous, ksmith27, Janner, Dada_Chris, dian in spokane, DonW

I have had a suspisious mole on my forearm for about the last year.  I called several dermatologists' offices in the last six months, but all of them have told me that they are either not accepting new patients, or their earliest appointment would be in 6-12 months.  In desperation, I went to a plastic surgeon and had the mole removed.  My pathology just came back, but unfortunately my doctor is on vacation for the next week.  The nurse told me not to worry because I have "malignant melanoma" is in-situ, but I was concerned after reading the following pathology:

"Diagnosis: Malignant melanoma.  The vast majority of this lesion is in situ.  Only focal focal superficial invasion is noted (depth of 0.3mm, level II).  Ulceration, regression, or vascular invasion is not seen.  An associated melanocitic nevus is focally seen.  An asymmetric proliferation of atypical melanocytes is present in the epidermis and focally in the superficial dermis. The melanocytes are arranged in irregular, varibly-sized nests and single cells.  Upward migration of single melanocytes is observed.  Adnexal extension is focally noted.  The melanocytes exhibit conspicuous nucleolus, irregular nuclear membrane, and moderately abundant cytoplasm.  Dermal mitotic activity is not seen.  A small area in the dermis shows nevocellular melanocytes with bland cytogenic features consistent with a melanocytic nevus.  Variable basal keratinocyte pigmentation and focal pigment incontinence are observed."

I have a follow up appointment, and the nurse told me that I would have a wide local excision, but other than that, my only follow up would be to see a dermatologist (if I can get in).  I was very concerned when I read the pathology, but all my friends say I'm making a big deal out of it, and that it's nothing I should worry about. 

Is there anything I should be concerned about in the pathology?  What does "the vast majority of this lesion is in situ" mean?  Is it "in situ" or not?  Should I also schedule an appointment with an oncologist, or should I just have the plastic surgeon do the wide local excision and then follow up with a dermatologist?  Do I have a high risk for recurrance?

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