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 15
Last reply 1/16/2016 - 12:33pm

Hi Everyone,

In October 2013 I was diagnosed with melanoma stage 4 with many metastases in my liver and both ovaries. I started to participate in clinical trials ( Nivo/Yervoy). Everything went really well, without any side effects and my CT scans were showing that liver metastases are not spreading and one on the ovary is getting smaller. Although there was a small tumor in my spine, the doctors told me there was nothing to worry - the treatment is doing its job. 

In April 2015 i was rushed to ER with severe pain in my right side of the hip and the whole leg. CT didnt show anything. I was on strong painkillers for two months and begged to do MRI. MRI showed I had new tumor on my hip bone. I was withdrawn from the trial and told I was getting Ipi. In July I had a radiation on my hip and spine tumors. At the same time headaches started and there was constant noise in my left ear. MRI of the brain showed one tiny metastasis which was  treated by cyber knife and I also got treatment for vertigo. Then my doc decided to put me on Keytruda.

At the end of July my headahces got worse, I started to have double vision, nausea, lost control of my left arm and almost couldnt walk. The urgent MRI of the brain was performed and my oncologist told me I had leptomeningeal metastases . I stopped Keytruda and switched to Tafinlar/ Mekinist combination which stabilized my situation.

My oncologist refused to do lumbur puncture saying there is no point in it.  I was told this is terminal complication and there is no cure. When Tafinalr/ Mekinist combination stops working, there is nothing they can do. 

I live in Israel and the medicine here is considered to be one of the best in the world. But I feel that my doctors gave up on me. I read that many patients with leptomeningeal complication in US are getting brain radiation and spinal chemo and other treatments. I am 31 year old woman, my body is still fighting. I dont understand why my oncologist doesnt want to do anything. I feel very desperate and depressed since the diagnosis.  Because of the high fevers and other side effects I had to quit my job and now the only thing I am doing is looking for any treatment in the internet. But there is almost no information on leptomeningeal metastases in melanoma.

Please let me know are there any options? Can I ask my doc to go back to Keytruda? Is there anyone with the same diagnosis? please help me, I am very desperate

 

Maria 

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Over 2000 folks come together!

http://melanomainternational.org/safefromthesun/

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stevecathy's picture
Replies 8
Last reply 1/15/2016 - 11:11pm

My husband is stage 3A with original melanoma on 4th right toe that was amputated July 2105. He had a lymph node disection in the groin with 4 positive nodes. He has now had 4 infusion of yervoy ending Dec 3rd of 2015. Last week went to dermatologist for 3 month check , he had approx 5 to 6 spots by the surgery site that looked like blood blisters but came back melanoma. Wondering if anyone has experienced anything like this with yervoy? Thank you

Cathy Jewell

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Anonymous's picture
Replies 5
Last reply 1/15/2016 - 10:46pm
Replies by: KMick, Azcaddyman, Anonymous, Empire

I was just diagnosed.  Dermatologist excised.  It was 4mm, which I understand is relatively large.  Have been referred to a Surgical Oncologist.  I expect discussion/suggestion of SLNB.  How soon should this be done?  What is the typical wait for such a test?

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Scared99's picture
Replies 3
Last reply 1/15/2016 - 7:52pm
Replies by: Anonymous, Scared99, Janner

Hey guys and girls,  I am new to the forum and apologize but I did not know where to turn.   Let me start by saying I have not been diagnosed with Melanoma.   I am 35 years old in good health.  

My concern is in July of last year I had my first full body scan since 2005 with a new Dermatologist.   I have always had alot of moles.   On my torso I have 7 that are around 4mm  and about 60-100 tiny pin point sized moles.  I was an idiot in my 20's...  I used tanning beds during my 4 years of college and 2 years after.   I sun bathed and rarely used sunscreen when outside.  I would only burn the first sun after the winter so I was ignorant and did not think I needed sunscreen because I would get very dark.  I regret all this now and it makes me sick.   My dermatologist in July commented on my moles and said that I had several funky looking ones and I need to consider having them removed at some point.    She biopsied one on my back that I never noticed and it came back very mild atypia.   She called me in and explained that I have a very high risk for Melanoma because of this atypical mole  and would need checkups every 6 months.    I had several noticable moles on my torso and she did not comment on them at all. 

Fast forward to this Dec.... I made an appointment with a new dermatologist closer to my home.   I had another scan with him.   He photographed a mole on my leg and said it was an inflamed nevis but wanted to watch it.   He scanned all my moles and said everything looked good.    He wanted to see me in 3 years,,, unless I noticed a change in the mole on my leg.   I was somewhat in shock after my visit in July and asked him if I had any atypical moles.   He said the only one that I noticed is the one on you stomach it looks somewhat atypical.   He asked me when I noticed it and I said I remember freaking out about it in 2003.    I went to a derm back then and they did nothing.   He said since it has not changed since then keep an eye on it and if you notice anything please come back in.    So the two differing attitudes of my dermatologist's confused me.    I made a 3rd appointment which I had Yesterday.

The third derm did a body scan on me.  He commented on my moles and said you know you have a good deal of moles.  Keep an eye on them.    He went right to the mole on my stomach and told his nurse we will get this one off.     He did not ask me about the history of the mole or anything.     This alarmed me and I asked him does this look like melanoma ?   He reponded it does not scream melanoma but it looks different from your other moles so I want to investigate it..  So he measured it and shaved it off.    It was 4mm directly above my belly button.    Right now I am confused and scared about the whole situation.   I did not notice ANY change in that mole since I first noticed in in 2003.    I am playing the what if game at the moment and making myself sick.    THe derm in July did not even pay it any attention,  the second derm in Dec made a fleeting coment on it and this derm wants it off.     Should I be alarmed about this ?  I am worried that this has been a melanoma for along time and no one did anything .

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Azcaddyman's picture
Replies 6
Last reply 1/15/2016 - 11:54am

I had a large melanoma lesion on the back of my neck (it's the first picture in the melanoma picture gallery). I was diagnosed through a small shave biopsy (maybe 20% of the surface. Barely a scratch). The pathology report showed no clear margins. Depth of biopsy was only .66mm deep. So my tumor was at least that deep. No mitosis, nothing remarkable on the biopsy other than ssm at least .66mm with signs of regression present at base. Again this was only a small spot sampled on a large (3" x 1.5") lesion. However all the data my pathologist has go go on put me at pt1a. I was referred to a head and neck surgical oncologist. She scheduled my wle and decided we would go ahead with a slnb due to the incomplete staging from partial biopsy. 

 

I had my surgery yesterday. I look like I was attacked by a shark. Again this was a large lesion. The surgeon  cut the back of my neck ear to ear and used a flap to close the wound so I have this nasty "U" shaped scar under the line from ear to ear.. But that's another story.

 

Here's my issue/question. After they injected the radioactive tracer I was told to move around/exercise for 30 min followed by 30 min laying in that nuecular imaging machine (don't know what it's called). I was told the dye wasn't draining from the injection site. I was given another shot and made to rub the area for 30 min. Back into the machine. Still not draining (nurses were accusing me of not exercising or rubbing correctly). Now I was made to walk the hall of the hospital with squishy balls in my hands and asked to exercise my arms and hands while I walked back and forth. I was getting quite the amused audience. So yeah I felt like a fool. Now back in the nuecular lab I was told the Dr wasn't allowing me to leave there until they found the right nodes. Back into the machine. Still not draining from injection site. Now they change their mind and tell me the Dr will just use a handheld scanner in the or to find the node. After surgery my Dr said she couldn't positively id any sentinel nodes. She did mention that there was some tissue showing increased radiation (which she did cut out ) however she wasn't even sure it was a lymph node let alone the sentinel node. 

 

I asked if that would impact her ability to correctly stage me. Remember the inadequate initial biopsy already made that a challenge. I was told she could clinically stage me even without the sentinel lymph node results. 

How? Isn't the definition of stage III lymph node involvement? I asked if they're would be any follow up imaging (pet-mri-ct) performed. My Dr said they don't do that. If she was suspicious enough she would use a sonogram to look for enlarged lymph nodes. 

Important information: I'm also a c.o.p.d patient and on a high daily long term dose of prednisone. This is the same drug used to treat lymphoma because it reduces swelling in the nodes. Knowing this how effective could a sonogram even be?

Is this a problem or am I worried for nothing? Anyone else experience a failed slnb and if so how did your Dr's handle it. Should I run like mad to another Dr? I'm limited on what my insurance will cover and I already chose what should have been the absolute best option available to me. I'm being treated at fox chase cancer center in Philadelphia PA. 

 

Oh p.s. 

Immediately adjacent to the scar is a spot (lump, bump) that has been rapidly growing and evolving that I already suspect could be modular melanoma. Of course this was completely ignored and now would be a nightmare to treat given its now moved location adjacent to a scar line. Although I admit this could be simply my own paranoia. Although the evolution is apparent thanks to the many pictures I was taking to chronical my melanoma. 

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katieherwig's picture
Replies 1
Last reply 1/15/2016 - 11:43am
Replies by: marissav

I'm doing some research on taking Plexus and would appreciate anyone's feedback. I'm currently on Keytruda and Tafinlar capsules. I'm considering multi vitamin, cleanse, probiotic, and the slim drink. 

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scots's picture
Replies 3
Last reply 1/15/2016 - 7:54am
Replies by: scots, kylez

I'm looking for anyone with a MEk mutation. What treatments/drugs are you taking. Any experience with this mutation.

scot

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Rlukas79's picture
Replies 3
Last reply 1/14/2016 - 10:49pm
Replies by: Rlukas79, Janner

There is so much conflicting information about severe atypical Moles vs melanoma in situ. 

my pathology report says Severe Atypia and was confirmed by other dermopathologists at the lab. The original derm I used says to me not cancer but severe and just get it excised in about a month or two. 

i had already planned switching to another derm that just has a much better foundation for their practice. I brought the pathology report to him and he broke it down for me on the malignancy and benign spectrum. Instructed me that of course severe moles have to be excised like melanoma, 5mm margins. Still insisted that I have no other concerns as he did a skin check two weeks ago and that a yearly visit is all that I need. My history with moles is mixed

1 severe atypia December 2015

2 moderate atypia, 2014 and 2009

1 moderate to severe Atypia 2010

and 5 mild Atypia 2009 and 2014

with this history should I be doing bi yearly visits?

i have no more atypical moles just normal moles scattered from my back (5 or so)

and about 25 on my legs. These are all normal. 

My derm says that while I may think that's a lot of moles and taking into consideration the ones that were removed and properly excised, he doesn't deem me as even a moderate risk. I'm fair skinned. 

 

My family doctor says Severe might as well be melanoma in situ because labs will under diagnose sometimes.  I thought it was the exact opposite. Over diagnose MIS rather than severe Atypia when it's just to hard to tell. Or refer to it as severe Atypia starting to evolve into MIS. 

 

So my questions refer to am I high risk and do bi yearly screenings?  And Is severe Atypia really just MIS?  If the normal risk of melanoma is 2% for an average Caucasian, anyone have an idea what it is for people that have varying degrees of Atypia?  

Thanks i was just bringing the anxiety down and my Family doctor of all people raised it back up. At least she gave me Xanax. 

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jbronicki's picture
Replies 6
Last reply 1/14/2016 - 2:21pm

Hi all,

Just passing along some positive news.  We got my husband's scan results at MD Anderson yesterday and still No Evidence of Disease.  We have done the wait and watch since his surgery 2 years ago.  He was initially thought to be Stage 4 nodular metastatic melanoma (scary words to hear) since his Breslow depth was 19 mm (I'm not missing a decimal point :) ) and there was no overlying epidermal component.  He does have the NRAS mutation.  I still remember getting his initial pathology back and seeing that everything he had (breslow depth, Clark level, mitotic rate, etc) was at the highest end of the spectrum and I would research and he had every indicator of immediate negative outcomes.  Our doctor here knows us as the couple who argues (we argue all the time at the doctors since I'm a researcher and my husband sees no point in researching, he is a "it is what it is" kind of guy).   It's hard to believe we are two years out.  As I was waiting on the 9th floor where the Melanoma wing is located, I always look around and think that maybe one of the MPIP bulletin board members is waiting too.  It's sobering to see all the people in the waiting room and hoping they are responding to treatment.  And of course, my thoughts drifted to Artie sitting in the same spot just several months before and it hurts the heart.   I just wish good stuff for everyone.  I'm going to lay off the research for a little bit, since our doctor told us that any adjuvant treatment and vaccine trials are not an option (too far out from original surgery and they would not risk the side effects at this point with NED) so we are in wait and watch path for the foreseable future.  We have a 7 yr old and now we have been approved for adoption so hopefully more good stuff to follow.  

Cheers,

Jackie

Jackie <3

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/14/2016 - 10:33am

Had my appointment with my doctor yesterday about what to do next after this last huge surgery. The options that were given to me are consistent with what most others here with stage 3 are getting. Dr Luke's opinion was watch and wait, ipi 10mg or trial, his personal opinion was watch and wait. He again stated the reason as ipi has shown about the same statistical numbers if you do it now or later. He did say some docs may get pd-1 off label but he doesn't agree with doing it now. The reason is that no trial data is in for adjuvant setting. He stated that if we give you pembro and the cancer comes back is it because it didn't work or because we used it the wrong way? There may not be enough cancer present for the drug to do it's job and then docs and insurance may be hesitant to give it to me again. I would also lose clinical trial options because of prior treatment. I am very high risk probably about 80% of relapse. The braf drugs cleared almost all cancer from the 1 positive node but did show microscopic cells still. He said that is the paradox with those drugs they work like magic but almost 100% of the time don't kill all the cancer. I have had a bunch of other nodes that were positive when i had my original superficial groin dissection that have all been removed by surgery. The other 6 on this surgery were clear. The one node was full of macrophages that had replaced the cancer. They dont know why but it is something to do with regression they think. So the hope is that was All of it and it has been cut out. They are going to try and laser dissect the cells that were still viable and see if they can learn anything about why those cells showed resistance. I did ask about staying on braf drugs and he didn't think it was a good idea. I didn't show resistance and we might need them later so he doesn't think we should burn them. Median time to full response is about 2 months and I was on them for 4. I am going to see if my local doctor will check into pembro and see if insurance will give me that option. I also asked about ipi with leukine as there was a trial that showed that combo to be a little better response rate wise and less side effects. He agreed it would lessen side effects but most people think leukine may actually suppress your immune system and it was to small of a trial to be relevant. Last thing will touch on is he said they are writing a paper on the bacteria in your gut. He said they have evidence that people on the east coast have a higher rate of colitis than people in the midwest because of the bacteria created in different environments now if that's not crazy! I need a scan soon since its been 3.5 months but I'm going to take a week or 2 and think about things before i make a decision if a could find a trial i think I'd look hard at that option but almost all are placebo or interferon. I have now had braf drugs so that will make a adjuvant trial that much harder to find. Long post sorry. Like always ask me questions i like feedback.

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/14/2016 - 10:30am
Replies by: Anonymous, AllysonRuth
emagdnim83's picture
Replies 9
Last reply 1/14/2016 - 8:20am

Just sharing the end of our story.

My father passed away on 01-01-2016 after battling stage 4 melanomas for 8 months. After being diagnosed with mutliple bleeding brain mets early October we had 2 really good months (compared to the time with zelboraf) with hospice care at home but without further cancer treatment (he had serious heart issues after one single dose of nivolumab). He didn't have any permanent cognitive issues after the bleeding had stopped and dexamethasone took care of the swelling. Doctors were really suprised how good he recovered. So he was able to enjoy all meals, drinks, could walk a bit but we all knew it wouldn't last forever. Then, some days before christmas he developed hemoptysis and was really short of breath the whole time. To fight his fatigue he received a blood transfusion which unfortunately didn't help anything. He didn't suffer great pain thanks to low dose morphin drips and after he became bedritten he got a morphin pump together with lorazepam. Final days were really tough for us all - the mechanical-like breathing in the last few hours will haunt me forever.

Now, i am not sure about hospice care only. It really was a great help and he could die at home, surrounded by his family. He didn't have to suffer pain i think. But, for the last 2 days or so i don't know because he couldn't answer any more. Doctors assured us he wouldn't have to endure pain with his medication.

On the other hand, with all the great news about new treatments all around it was especially hard for me not to do anything and i think i will forever think about the "what if..." and "maybe we should've continued nivolumab". Sure, his quality of life with zelboraf was really bad and even nivolumab knocked him down with fatigue, loss of appetite and heart issues... maybe even the bleeding was caused by it? We don't know for sure.

Thinking of Artie. He replied a lot to my posts and gave advice how my father could maybe make it until christmas. Artie literally tried everything and had to fight a lot of side effects and pain. He lost the fight, too. This reminds me that there still isn't a cure for lots of people even with all the good news about immunotherapy all over the media...

So, for all late Stage 4 Warriors out there: please write down your will how you want to be treated when you can't decide for yourself any more, for example when brain mets hit really fast or suddenly begin to bleed. Just in case. It is super hard for relatives when they have to decide wether to continue treatments or going into hospice care. 

Thanks everyone around here for giving good advices and sharing lots of information and even good news in some cases. Its good to hear that new treatments help more and more people fighting this ugly, horrible disease. Keep up the fight. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/14/2016 - 6:02am
Replies by: Anonymous

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