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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dotty's picture
Replies 8
Last reply 8/23/2014 - 1:57pm
Replies by: dotty, oldblue, sweetaugust, Anonymous, JerryfromFauq

Hi, my biopsy results came back yesterday showing Stage 1a, 0.5mm from a mole on the sole of my foot. I'm 20 years old and this was a big shock for me in the middle of a busy week at university. I'm having a wide excision done this thursday w 1cm margins and am told that apart from regular checkups every 3 months with my derm, there's nothing else I should be doing.

Now, I consider myself very lucky to have caught it early and know that for my stage WLE has a good cure rate, but I'm wondering if there's anything else I can be doing to prevent recurrence? My derm told me my type of melanoma is unrelated to sun exposure and possible more genetic (often occuring in patients with asian ancestry), but that I should be using SPF 60+ from now on. Do I need to go out of my way to avoid being in the sun? (i.e. no surfing/beach, limit going outside??)

I also get colds pretty often so boosting my immune system up is one of my priorities. Do you guys have any tips for diet, excersice or lifestyle changes that are working for you?

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I heard the most shocking news imaginable. For the last year my whole town and actually people from all over the country have been rallying around a 4, now 5 year old with metastatic colon cancer only to find out it was all a hoax on her mother's part. The mom was arrested and so far has been charged with felony child endangerment and another felony for giving her cannabis oil. This girl had a Facebook page showing her bald with a feeding tube in her nose. She even had a bucket list so she was told she had cancer and was dying. In just two websites they have received over $7600 not to mention the countless benefits our town has had or just people donating to them. This is so hard to fathom a mother doing this. Riley' s #1 on her bucket list was to meet Ariel at Disney and that was made possible. Her mother would be on Facebook constantly updating on her and even said it had spread and they had stopped chemo. Her father is the manager of our local Walmart and worked a lot so they are saying he didn't know but that just seems crazy. Did he never occumpany his wife to the Dr? If not then shame on him. Personally I think she was drugging her with cannabis oil and it was making the child not feel well and sleep a lot. That's when she would take her picture to post on Facebook. This all was figured out when Riley was to start kindergarten. The school was trying to make a plan for her and her medical records weren't adding up so they called police. I can't imagine what this poor little girl must be thinking. Google Riley slauson.

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I am sharing my experience of reduced dosage and then every other day reduced dosage in the hope that it helps others.

A brief history. Melanoma found around 20 years ago through mole on back. Excised. No treatment. 2011 another mole was melanoma. Lung nodules. VAT lung surgery. IL2. Numerous small lung nodules grew extremely slowly and all under 1 mm through 2013. September 2013 2 small brain mets (.2 & .3). Gamma November 2013 worked on those two. January 2014 two more small mets. Gamma February 2014 due to growth of those.

Started TAFINLAR + MEKINIST February 2014 to combat brain and lungs (which since November had grown where now 2 were >1 mm.

For the first 50 days I needed 4 breaks due to shakes and loss of appetite. At that point daily Tafinlar dose was lowered from 300 to 200. By day 75 still having side effects so changed to every other day. Now almost 6 months in still getting results on a reduced, every other day dose.

April brain scan shows significant resolution or non visible mets.

May chest scan shows mets reduced 70%. Dose reduced and then changed to every other day.

July brain shows continued resolution.

August chest shows further 15% reduction.

My message is that not every person must follow the norm. I had a difficult time accepting from my doctor that this was a reasonable dose. I was scared that the low amount of medicine would not work. Turns out she was right.

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/22/2014 - 2:04pm
Replies by: MacMac, Anonymous, Janner, kab07011, JerryfromFauq, Momrn5

 I have recently been diagnosed stage 1b.  The melanoma was 1.8 mm- no ulceration- mitotic rate of 3- which I know is bad!  I guess I just read everywhere about all of these stage 1 and 2 patients who 10 years later have it return. Is there no chance of long      Term survival?  I already had lymph nodes check and they came back negative.  I guess I'm just not seeing to much positive about this and feel like I am just waiting for it to progress to stage 4.  I'm a terrified new mom and afraid I won't be here see my little girl blow out her birthday candles. 

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G-Samsa's picture
Replies 10
Last reply 8/21/2014 - 10:48pm

I thought this might be interesting for others on this path.  I am nearing the final scheduled trial treatments and have had little difficulty tolerating them.  My most recent scan showed, amid all other stable or reduced tumors, two new less defined spots in my lungs.  The Drs. felt that while new melanoma could not be ruled out, it was more likely a reaction to the drugs.  You may have seen that there was an important paper presented at ASCO on the serious side effects to the lungs from the combo (translates to high mortality)  The course of action was to skip treatment and schedule an interim scan (4weeks). It's hard to for me to skip a treatment since I believe  this has been a life raft---you forget how powerful the drugs are and that the things they set in motion can build, and that you sometimes have to let go and hope you can swim.  Don't know whether anyone else has had this experience, so I thought I'd put it out there to stimulate awareness.

 

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RJoeyB's picture
Replies 7
Last reply 8/21/2014 - 9:01pm
I thought I'd report a phenomenon I've experienced over the past year or so which others may find interesting or have even seen yourselves.  If you read my profile or have seen my other posts, you’ll see that I've had three different immunotherapies in the past four years:  high-dose IL-2 and TIL cell therapy (at NIH in 2010-11) and Yervoy (at my home cancer hospital in Spring 2013).  Even prior to Yervoy, I started to notice very mild vitiligo in my hands, feet, and neck — mild enough that you might not notice it if I didn't point it out, but knowing my skin as well as I do now, I can see it.  My doctors have always been pleased to see it and the incidence of vitiligo and immunotherapies are pretty well documented elsewhere on this forum, but this isn't about vitiligo per se. 
 
Much more dramatic for me has been the complete disappearance of many moles all over my body.  I was never officially diagnosed with any sort of dysplastic nevi syndrome or disorder but have always had a significant number of moles since I was a kid, too many to count and always something we knew we had to keep an eye on.  I never had a dermatologist say flat-out that I should have a photographic mapping, even after I was diagnosed with melanoma; I asked a couple of times if they recommended it, and they were always borderline as to whether I needed to or not.  In hindsight, I probably should have just done it, but ultimately, my primary disease didn't present as an existing mole, but a new reddish bump that looked more like a cyst and my dermatologist was pretty sure was a basal cell carcinoma until the pathology report came back as melanoma.  Just pointing out that the photographic mapping wouldn't have done anything to help me with an earlier diagnosis, but I still wish I had done it.  I had a lot of moles of varying shapes and sizes, especially on my back where they're harder to watch, but all over my body, really.  Worth noting here that since my diagnosis, all of my skin checks, typically every six months, are with the dermatologist at my cancer hospital, which is an NCI-designated Comprehensive Cancer Center.  At each of my skin checks, there has often been one mole that would look “a little odd” and which my dermatologist would biopsy.  They usually came back as mildly to moderately atypical, sometimes we’d need to do a wider excision and sometimes the margin on the biopsy was sufficient.  At Stage IV for four years, I don't get too worked up about these things any more.  Some of you can probably relate that the ABCDE criteria aren't all that helpful to some of us, they all look a little odd, with the most significant indicator being moles that are either changing (the “C”) or look different than any of our other already odd-looking moles.  My dermatologist basically said that pretty much any of my moles we biopsied would likely come back as atypical to some degree.
 
Over the past year especially, though, while the vitiligo has been relatively stable and hasn't changed or progressed muc), we've noticed that many of my moles have completely disappeared.  By many, I'd say about 90% of them (this is where a good mapping would have come in handy; instead, I've compared now to pictures of my face or arms, unfortunately no good pictured of my back) are gone and many others are faded.  Where they've disappeared or faded, they haven't been replaced by vitiligo spots of no pigment, they've just returned to my "normal" looking skin.  I don't know if this is also classified as vitiligo or has another name...  "nevi depigmentation"?  Regardless, like the vitiligo, it's something my medical oncologist was particularly pleased to see when I showed him a picture a few months ago that was a close-up of my arm from a few years ago, just before I had TIL, compared to today.  
 
We know that this and the vitiligo are no guarantees of continued response of any kind, but are certainly not bad things in the context of immunotherapy; the reason they can occur in the first place with immunotherapy is pretty clear.  We don't know if we can attribute this to the TIL cell therapy or Yervoy, perhaps it's both.  We started to see the vitiligo before I had Yervoy, but didn't notice the disappearing moles until the past year or so, but it may have started earlier.  While both my medical oncologist and dermatologist have seen vitiligo before, they haven't seen this "disappearing mole" trick, at least to the degree that it's so obvious with me.  Frankly, it makes my skin checks, both self-exams and with the dermatologist, quite a bit easier, as I have many fewer existing moles that I don't have to track and wonder if they have changed.  I still have to be on the lookout for new ones, certainly, but that's become a simpler task now.  I also imagine there may be an increased risk of one of these disappeared moles becoming an amelanotic melanoma, but again, I'm still vigilant for new irregularities — as I said earlier, despite a large number of moles, my original primary didn't present as an existing mole that started to change.
 
I thought it was worth sharing, and am curious if anyone else has seen this with their own moles?
 
Joe
 

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Resilient4Life's picture
Replies 2
Last reply 8/21/2014 - 7:39pm
Replies by: Resilient4Life, Janner

This post is a follow up to "Informed Yesterday". My report came in the mail, naturally after business hours. Please decipher.

DIAGNOSIS: Skin (left forehead): Consistent with actinic keratosis, I

Note: No evidence of carcinoma is identified in multiple sections. Only a small amount of dermis is available for the specimen study.

Skin: (left upper arm): Malignant Melanoma, II

Thickness: 0.25 mmm, Clarks Level II, no ulcer or mitosis

Note: Most of the lesion is malignant melanoma in situ, lentigo maligna type but it extends focally into the superficial dermis. In situ melanoma extends to the side margins.

CLINICAL HISTORY:

Left forehead-6mm atropic pink macule, basal cell carcinoma

Left upper arm-7mm pin and brown macule, basal cell carcinoma

GROSS DESCRIPTION:

Left forehead coded I: A 0.5cm. specimen is pale tan.

Left upper arm coded II: A 0.5 cm. specimen is pale tan.

James A. Seab, M.D.

My untrained eye sees the words Malignant melanoma and basal cell carcinoma. I thought these were two different things. If the first forehead note says no carcinoma, why does it say in the clinical history basal cell carcinoma? Should I push for a removal of the forehead area as well? Thank you in advance for your replies.

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Nell's picture
Replies 14
Last reply 8/21/2014 - 6:33pm
Replies by: Bleeds, Nell, Anonymous, Mat, BrianP, Marianne quinn, kylez, jogo

Next week I was to have a 4th  infusion of Yervoy. Diarrhea has become progressively worse, so I have been taken off Yervoy and put on prednisone. Just wondering what side effects of prednisone any of you have experienced.  Also, what happens if this doesn' t stop the diarrhea?  Then I wonder if there is a possibility that I could still have the last infusion at some point? I know only a small percentage of us will be Ipi responders, but is it still possible now that I will miss the last dose? Disappointed....:(.....also nervous because I know this colitis can get serious....Thank you for the help.....I wish blessings on all of you.

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

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cerabell18's picture
Replies 4
Last reply 8/21/2014 - 6:07pm

Sorry if this is a bit lengthy.

I had a mole on my arm for as long as I can remember but over the last few months people have been commenting on it. It has always been raised and multicolored. I went to a GP and he made it sound like there was nothing to be concerned about but that I should go to a dermatologist because it was suspicious. I went to the dermatologist and the doctor definitely didn't help me feel less nervous.

I told her all the needed info (burns, family history, how long have I had the mole, are there others) and she took a look. The first thing out of her mouth is "This is bad" and then she left the room to grab another doctor, not saying anything to me. I think she realized how upset she made me when she came back in with the other doctor and found me crying. I'm not an overly emotional person so it takes a lot to get me to cry. When I went to their office today I figured I would just be getting the mole removed to be safe, not be told that they believe it's melanoma and I need to get a biopsy. I was not mentally prepared for that conversation.

I got a incisional biopsy and heard from them one week later. The main tests were inconclusive. The mole was deep but since it is something I've had from a very early age that is not uncommon. It was strange because they were seeing atypical cells with normal cells but nothing that screamed melanoma, it was just something they were leaning to. The doctor said that she was sending out for 'special testing'  to get a firm diagnosis as they can look for specific things in the tests to say one way or another.

I just got a call from the doctor saying that it is "kinda bad news." The special testing results came back negative but since the cells were so atypical they are diagnosing it as melanoma and want me do a sentinel node biopsy and a wide excision. They said even if the mole wasn't melanoma that the atypical cells can still travel to my lymph nodes and they were a concern enough that I don't want it in my body. She said it's possible that this mole would have never caused problems for me or it could be very serious.

I really am at a loss on how to feel. On one side, I guess the special tests look for specific markers all came back negative, which I think is a good thing? It sounds good but she kept saying "We are still diagnosing it as melanoma because they are so atypical." I'm picking up my pathology report this afternoon to see if I can understand any of it. I'll have to do the dreaded Google to see what I should look for. I'm trying to be hopeful and think positively but I'm just so overwhelmed. I had hoped this call would give me some closure, either I have cancer or I don't, but the doctors are still unsure but are playing it safe. I want to just accept that I do but with the uncertainty on their end it leaves me with hope that this is just a nightmare I'm going to wake up from.

Has this happened to anyone else?

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Anonymous's picture
Replies 8
Last reply 8/21/2014 - 1:35pm
Replies by: Anonymous, deardad, casagrayson, dodgedh2, Janner

As taboo as subject as this is, I need and want to know what it will like and what I can expect to see as my loved one gets closer to death from melanoma.  Does anyone have insight that they can share about this?

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OpalSay's picture
Replies 3
Last reply 8/21/2014 - 10:59am

I was just recently diagnosied with Desmoplastic Melanoma. Don't really know to much about it, or any specifics. All I know that its very rare and usually happens in elderly males. I am a 28 year old female. I am going in for surgery Sept. 13 2013 for removal and to biopsy my lymph nodes. Other than that, I really have no idea what is going on or what to expect from that. I found one other person who has been through this, but it wasn't as big or had to go through the lymph node biopsy. They told me the staging will come after the lymph node biopsy as well. 

 

If any of you have any more information on what to expect, I would greatly appreciate it. 

Also, they say melanoma isn't painful but mine hurts so bad, and makes my whole arm hurt. It also turns bright red and a large area around the lesion gets fire hot to the touch. It also feels like someone is burning my arm with a cigarette. I have been keeping track of the lesion for about two years now, but not sure how long it has actually been there. I started to keep track once I noticed it wasn't getting smaller, but was getting bigger and bigger. 

 

Thanks

Opal 

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mary1233's picture
Replies 0

As many others of you have experienced, the removal of lymph nodes can create lymphedema which is a pain in the neck to manage. I had a number of nodes removed in my groin which resulted in lymphedema in one of my legs. Combining that with the chemo induced neuropathy has caused a fair amount of concern.

I was doing all I could: drinking water, wearing a compression hose during the day and compression bandages at night. Fluid still pooled in my ankles and knees causing pain.

Two days ago I read a piece on the Sloan Kettering website about neuropathy and they briefly mentioned MLD - manual lymph drainage. Youtube has videos on how to do self MLD massage. I tried it two nights in a row, and my knee feels so much better.

There are also Youtube videos for arm MLD but I did not watch them.

Hope this helps someone.

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Anonymous's picture
Replies 1
Last reply 8/21/2014 - 8:08am
Replies by: Anonymous

http://www.webmd.com/melanoma-skin-cancer/news/20140820/high-risk-melanomas-often-on-head-or-neck-study-finds

 

 

"We may now get more aggressive in the treatment of melanoma that is not deep but has a high mitotic rate. Instead of just cutting it out, we may add in chemotherapy," she said. "So we may change how we evaluate melanomas and how we treat them."

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curious12's picture
Replies 5
Last reply 8/21/2014 - 6:18am
Replies by: Anonymous, curious12, Janner

My son (age 9) had a spot removed from his heel. It was removed via punch and apparently was mildly atypical, but with margin(s) involved. The derm thinks completely unnecessary to re-excise. I am bummed there are margins (although thankful it is nothing)  Would it be overkill to take him elsewhere to re-excise? I have read that acral nevi on kids appear atypical under the scope anyways. It was 1mm,dark and on his sole? It's also painful to have a shot there, but will do it if need be! I'm not comfortable asking the derm to do it-- he really didn't even want to remove it in the first place. Another derm thought it was slightly atypical but she couldn't do a punch so I went to him. guess that backfired!!

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Had a large tumour removed from my back (13mm, mitosis 12, ulcerated), and WLE/SLND in January '13. Have felt great since. Surprisingly, my last scan (August 1st) showed 3 growths in my lungs (2 on left, one on right). All 3 are about 1cm x 1cm. I'm at Sunnybrook, in Toronto, and have signed up for a clinical trial. I'm BRAF positive. The trial has three arms Vemurafenib, and two others. Haven't been told what the other two are yet, but at least I will definitely be getting something. Has anyone else done this at Sunnybrook? I know it's pretty vague info right now, but will update, when I find out for sure...

 

 

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