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 2
Last reply 8/23/2014 - 10:21pm

My mother is a case of melanoma left heel with left inguino pelvic lymphadenopathy. Wide local excision done with lymphnode dissection done on 14/05/14

We are based out of India

Docs did tell us it quite rare. Post surgery, they have opted for wait and watch . The surgery happened in May and we got CT chest and CT whole abdomen (triple phase) done on August 2. CT chest shows no abnormality. However, CT whole abdomen (Triple phase) shows subcm right external iliac node measuring 2.0x .9 cms. Docs have again called us after 6 weeks for follow up on this. I am confused and scared ..is this spreading? How bad is this?

Also, her CBC(Haemogram Complete)-C/71 shows decreased haemoglobin from 12.5 to 11.4 now. Total Leucocyte Count as 13200 (reference range 4000-11500), Monocytes as 8.6 (reference range 2.6-8.5) , MCV 76.3 ( ref range 80-101), MCH 25.0(ref range 26-38).

She is not under any medication right now.

Please suggest how bad is her condition? What is her life expectancy in this case? I am terrified and scared. I love her.

Look forward to hearing back.
 

God bless 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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Mamasgotsomescara's picture
Replies 2
Last reply 8/23/2014 - 3:46pm
Replies by: Linny, Janner
Hi all. I am 3 months post surgery for stage 0 melanoma on my lower leg. 
I have a apt next week with my dr., but I am nervous about a new freckle I discovered on the bottom of my toe. My dr hasn't checked the soles of my feet in over a year and it didn't dawn on me to check them until recently. The freckle is light brown and white. Should I be worries? I read online it's very rare to have freckles or moles on the soles of the feet.. 
 

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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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Nal64's picture
Replies 9
Last reply 8/23/2014 - 11:53pm

My 40 yr old husband found a lump in his shoulder in January. We believed it to be a muscle knot but when it didn't go away after a few months we were sent to a surgeon.  The general surgeon didn't like that the lump was underneath the muscle and took a needle biopsy that was diagnosed as melanoma. The general surgeon disagreed and sent us to a sarcoma specialist at the University of Chicago.

Our sarcoma specialist performed an incision biopsy to make sure radiation was appropriate for the "sarcoma". We also had a PET scan done that showed no other evidence of disease. The sample came back from the pathologist again as melanoma (but now from a more reputable hospital).

Our sarcoma specialist conferred with a team that included a radiation specialist and melanoma specialist and decided excision without prior radiation was the best course of action. He removed a 3cm x4cm tumor with narrow but clean margins on July 1, 2014 on the side of the neck and top of the shoulder. It was located beneath the trapezius muscle. No lymph nodes were checked because this was considered "metastatic" with an unknown primary.

We then sought the care of a highly regarded melanoma specialist within our advocate hospitals medical network. He says he believes that the PET scan is correct, that this is a "primary melanoma of soft parts which is extreamly rare and cannot be staged because melanoma is staged from the top of the skin down".  This tumor appeared beneith the muscle. We can find no other information on this diagnosis online, as it all leads back to clear cell sarcoma. 

I should also make it clear, this tumor has been tested for every genetic marker there is. It contains NO genetic mutations and a FISH test was performed that completely ruled out clear cell sarcoma. 

The melanoma specialist wants to take a "watch and wait " approach. He fears radiation would do more harm then good in the long run. He said if Yervoy were available to us that he would give it, but that the FDA hasn't approved it for Resected melanoma. 

Yesterday my husband had a follow up with the surgeon who performed the resection. Because I couldn't attend the appointment, I emailed a list of nagging questions I still had. The surgeon was then able to talk to the melanoma specialist (gajewski)  on staff at UofC before my husbands visit. The surgeon said there is no such thing as "primary melanoma of the soft parts" . They believe the PET scan missed something microscopic and want us to see Dr. gajewski who will most likely radiate and get us into a clinical trial where we will either get high or low dose yervoy or IL2.

The melanoma specialist we have been seeing with a watch and wait approach told us he would contact our surgeon twice. He has not. We are in the process of emailing him and getting answers as to why this wasn't done.  

The question becomes: do we get our second opinion at the University of Chicago (where we have pretty much been told by the surgeon what treatment will be) , or do we seek out a "third" -but second to our insurance company- opinion that proves to be a tie-breaker? Is it too late for radiation? Do we fight to get seen at MD Anderson or Sloan-Kettering? I would love another PET scan too, but will not be allowed one for one year following the resection per our insurance company.

Any info you have would be greatly appreciated. We are so confused at this point and don't know who to believe. I have all path reports and any other info needed if it would help someone lead us in the right direction.

Thank you in advance

-N

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bigb0624's picture
Replies 3
Last reply 8/23/2014 - 11:26pm

Now that i have used Zelboraf, with success, and the combo Tafinlar & Mekinist, with some success, my tumors in my liver have showed progression and now my doctor wants me to start Merck's PD-1. Has anyone followed the same course i am taking and were there any side effects to the PD-1?

Barry 

 

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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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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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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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cavsnut's picture
Replies 5
Last reply 8/23/2014 - 11:02pm
Replies by: JerryfromFauq, Anonymous, Colleen66, cavsnut, Bubbles

Hi all...just had a WLE and SLNB yesterday at the James Cancer Center @ Ohio State. It went well , doesn't hurt too bad today...the melanoma was on my calf and had 3 lymphnodes removed from groin for the SLNB.Initially my stage is 2a with the tumor being 2.1mm thick, miotic rate of 1, no regression or ulceration. My question is, if it has spread to the lymphnodes, should I have them all removed? From what I have read if it's only there microscopically is it in my best interest to have them all removed when it could cause more problems for me than taking the chance that the melanoma may not progress past that point? Just thinking ahead I guess...

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DZnDef's picture
Replies 1
Last reply 8/26/2014 - 3:44am
Replies by: rick1981

Hi all,

For those of you interested in learning more about Integrative and Alternative approaches to cancer, there is a free online summit starting on September 2nd.  You would have to give them your email address (yes, you will be added to their mailing list) then you can attend the summit for free.  They make money by having folks sign up for a monthly membership where you can watch/listen to the presentations anytime rather than just the free period.  But you aren't required to be a member to listen during the free period.

TheCuretoCancerSummit.com

I don't seem to be able to add live links on my ipad for some reason, but you can cut and paste the link above if you're interested in the material.

Be well,

Maggie

 

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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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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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The PD1 is doing fantastic but there are a few problematic tumors thus they want to do radiation.

A tumor in my skull is right at my brain. Tomorrow's MRI will show details. But today my radiation doc was thinking of doing external beams to that section of the skull where the tumor is of 39 gray in 13 fractions. After the MRI he will know if he can instead angle the beams to just that tumor or if we are dealing with further problems. The pet scan did seem to indicate several tiny tumors in various spots of my skull as well as this 2cm one.

There are also the t12 and l2 in my spine. He's thinking of doing those like last time for the t10 of 30 gray each in 5 fractions. Although they are a problem I'm not having anywhere near the symptoms like I did when the t10 almost paralyzed me last winter. Although the pet/ct scan seems to indicate from the light on the skelatal view the t12 is about 2 thirds the size the t10 used to be. It's a short horizontal bar instead of a dot.

So my first concern is over 90 gray seems like a whole lot of radiation but I dunno maybe that is common. It's certainly more than 3 times what I've had in the past.

My second concern is the plan to radiate the tumor in my skull. I was thinking something more like gamma knife but maybe that is only for inside the brain not the skull at the brain I dunno. I was also thinking intensity-modulated radiotherapy (IMRT) but again maybe that is only for inside the brain. I know mayo where I get my pd1 is still working on their proton therapy which again may not be for this. I know when my doc kept me from being paralyzed he did stereostatic radiation (SRS) with a CT scanner to more directly pinpoint the beams.

So I dunno. I'm kind of over my head again. Any advice would be appreciated.

Artie

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