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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robbier's picture
Replies 3
Last reply 8/25/2014 - 9:25pm

After 4 surgery related biopsy. Being sent to MD Anderson back in May 2014. Here is my update: July 23; 2014 pet scan showed 2 areas of concern. On in the pelvic area, the other the mid right shaft in the right leg. Was sent for a bone scan Aug 12th. I chose to go to hospital to get the results before going back to see cancer Dr Aug 12th . I wanted to know the results, because we the doctor and myself where to talk treatment. Results from bone scan no abnormalties seen in pelvic area, no abnormalties seen in mid right shaft. No evidence of metastasized disease seen. I thank God for this! Doctors appointment I ask my Doctor what's next? Treatment? His reply was you can't treat something that is not there. Again I praise my God.! At this time I will be followed next test and appointment not until October or November. Very happy lady and I still give my God the credit for helping me through. Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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gossteach's picture
Replies 20
Last reply 8/24/2014 - 9:20pm

Hi- I am new to this forum, but have learned so much from all of the info that has been posted. I am in my fifth month of interferon treatment for stage 3B. I feel like the symptoms are getting progressively worse as I get further along....I have joint pain, headaches, loss of appetite,fatigue, and I'm staring to notice myself being very irritable, which isn't my nature. I guess I thought I would get used to the symptoms and feel "normal"by now, but that's not the case. Some of you have stopped interferon due to side effects....how did you know when it was time to stop? Is it typical for side effects to get worse in the later months of treatment?

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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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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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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'm me, not a statistic. Praying to not be one for years yet.

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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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Ginger8888's picture
Replies 12
Last reply 8/23/2014 - 2:58pm

I did the 30 day Hd interferon back in april with just a little fatigue as side effects and failed it..I just finished my last of 4 infusions of Yervoy Wed and have no side effects with it either..I've been reading about the Yervoy and most people are having crazy side effects and it's working for them..I am very worried that i'm not going to respond to it because of the lack of side effects..Has anyone responded to Yervoy with no side effects?..I won't have scans for 4 weeks...I'm stage 3 C

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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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