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 6
Last reply 1/19/2016 - 4:34pm
Replies by: Maereard, Rlukas79, Anonymous, Janner

I went for my regular skin check last week and while I was there I asked the doctor to check a spot on the back of head that was itching like crazy. I expected him to send me home with medicated shampoo. What I got was a small chunk taken out of my head with the smell of burning flesh to stop the bleeding and a terrible anxiety ridden wait on a pathology report that still is not back. I have been NED for 3 years. I was stage 1 at diagnosis (it was on my shouldler blade/ back)and have only been hit with basil cell about 5 times. Anyhow I did not prepare my mind for anything on my head!!!! Now I'm panicking and loosing sleep. My head keeps itching but the dr. refuses to prescribe anything until he sees the report. He usually reads them himself but this time they sent it out to MAPS "to be sure." Sure of negative or positive they won't tell me. I'm so scared. If it comes back on my head I'm terrified and the Internet odds are NOT helping my paranoia:(

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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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Rlukas79's picture
Replies 1
Last reply 1/13/2016 - 8:23pm
Replies by: casagrayson

First off I would like to express how tough everyone of you on this board are.  Whether it's dealing with this disease in your body or caring for someone that has it or have lost someone to this disease.

I can start by saying I'm lucky.  My spot that was removed was indeed a mole.  It came back with Severe Atypia.  Here is the entire pathology report.

Pathology report reads:
Junctional melanocytic nevus with elongated. fused rete ridges and concentric lamellar fibrosis within the underlying papillary dermis.
A mild superficial dermal lymphocytic infiltrate is identified.  Cytologic atypia is severe.
 
The whole path report reads:
The lesion appears to be completely excised, but is close 
to a lateral (peripheral) inked edge.  Conservative
re-excision is recommended to ensure all atypical melanocytes are removed.
Immunohistochemical staining was performed using Melan-A (A specific marker of Melanocytes)
to ascertain the degree of melanocytic hyperplasia and presence of intraepidermal melanocytes.  Aprropriate postive and negative controls were 
performed.  Melan-A primarily stained lentiginous cells along the elongated rete with occasional pagtoid cells.  These findings support the above histological diagnosis.
[b]THIS CASE WAS REVIEWED AT THE DAILY INTRADEPARTMENTAL CONFERENCE.....[/b]
I guess this was an interesting mole.
 
So the Derm says the prior damage (nair chemical burn and ruptured the mole pretty good andTook a few months to heal) definitely could have played into the architectural and cytologic atypia but the problem is, it doesnt matter.  Understandably when a cell is atypical it's atypical, it doesn't matter how it got that way.  It could have been a normal mole, could have been a mildly atypical mole etc.  Regardless iIt's severe and needs to come out.  Which I 100% agreed with.  Comes out next Wednesday.  He explained When you have a severe dysplasic mole it gets treated like Melanoma in Situ - 5mm margins. 
Also said it may have never turned into melanoma but being severe it has a greater chance than just being mild or moderate.
 
Told me there is no need to come for bi-yearly visits.  My yearly visits are all I need and to just to a self examination maybe once a month and he said if anything should seem outof the ordinary or if I'm unsure just make an appointment to get in.  He says way to many people make the mistake of thinking something isnt a problem and may be embarrased to come get it checked out.  He would rather tell you it's nothing right away than a serious problem several months down the road.

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ecc26's picture
Replies 16
Last reply 1/31/2016 - 9:42pm

I know I've been absent from this board for a long time, but I find myself apparently failing the Merk PD-1 I started a year and a half or so ago. I won't go into a lot of details about my past as you can find my other posts on here by doing a search

I had 2 masses in my chest that I underwent radiation for in the fall and those look great at this point, but I also had 5 new brain mets (that turned into 14 by the time I got up to the center for gamma knife). I've got an enlarged lymph node in my neck and after yesterday's scan results apparently a new tumor in my spleen and one near the cranial pole of one of my adrenal glands. Since they treated 14 with gamma knife instead of 5, my medical oncologist is reserving judgement on that until the scans get up to that doctor, but there were still a whole bunch on the MRI. Hopefullly I'll have an answer about which were treated and (hopefully) responding. 

I've been fighting off my oncologist's suggestion that I switch to the PD-1/Ipi combo because I remember well how I felt on Ipi and I've had no side effects on on the PD-1 over the last year and a half. I should also note that if not for the scans, the only tumor I'd have known about is the lymph node in my neck- for which I was hoping to possibly use the recently approved Herpes vectored vaccine (since it needs to be injected directly into the tumor). But I think I've run out of time to stave off changing therapies, especially if the MRI shows no improvement or worsening. I've been spending time today looking for trials and other possibilities. 

The other possibility my oncologist mentioned was a vaccine trial happening in Buffalo, NY, but he didn't seem to be that excited about it- probably because the melanoma specialist I used to see up there has moved out of the area and is no longer there, but also because vaccines in the past have not really panned out very well. I'm not sure he has as much faith in the the department that's there now, and he did call my former specialist to get his opinion- who suggested the combo therapy. He has also contacted Dana Farber (Boston, MA) and they have not implemented that for their patients, despite having run trials for it at their hospital. 

Does anyone on here have any other suggestions? I'm on a bit of a time crunch to get it figured out as he'll be looking for an answer likely tomorrow evening after I see the radiation oncologist. I'm not critical (yet) but know myself well enough to know not to hold off too long. I don't want to give up the no side-effects if I don't have to, but I don't want to waste time on a vaccine trial either. I know there's no way to tell if it will work or not, but I have no idea (I'll be reading about it this afternoon) what is involved with the trial or if I'd even qualify for it. Any help/suggestions would be greatly appreciated

 

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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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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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Asc08's picture
Replies 3
Last reply 1/13/2016 - 9:40pm
Replies by: Asc08, Fen

hi all - new to this board so please forgive me if I am doing this wrong. My dad was diagnosed with stage 2c back in September 2013 on his head. He had surgery and a years worth of interferon therapy. All was well until a few months ago a new mass appeared on his pet scan behind his ear. He just had a neck dissection to remove the mass and lymph nodes. 6 came back with melanoma out of 61. They are recommending radiation pending another pet scan in a month to make sure nothing else shows up. 

Wondering if anyone here has had radiation to the neck area? Truthfully I'm not sure what I'm looking for other than trying to see if anyone can share a similar experience. 

thank you

 

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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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scots's picture
Replies 11
Last reply 1/13/2016 - 11:14am
Replies by: scots, Bubbles, BrianP

I may be starting a clinical trial using glembatumumab - vedotum. I was wondering if anyone had any experience with this drug? Side effects/ opinion.    I'm braf negative. The oncologist is also trying to see if she ca get my insurance to pay for MEK Inhibitor.  Any opinions the MEK inhibitor?

 

thanks,

scot

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/13/2016 - 1:21pm
Replies by: Janner, Scottw, Anonymous

Anyone have a good experience with oncologists in Oregon. Looking for suggestions.

Rebekah

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Tessie64's picture
Replies 1
Last reply 1/11/2016 - 7:09pm
Replies by: Janner

I had a small mole (6 mm) removed from a toe by punch biopsy three weeks ago. Pathology came back as lentiginous junctional melanocytic proliferation with mild to moderate atypia. I was told that I need to have a complete excision done; appointment is in a month from now.

The area is still very sore. When I look closely, there seems to be mole left around the punch incision. Could this be new growth already, or do they only take a small  specimen of mole for testing? If it is regrowth, should I call doctor for sooner appointment? I wanted to say above that this a fairly new mole (started as tiny dot about 4 years ago) that has been growing.

Waiting is hard. Should I be concerned that after the excision, the pathology could come back as melanoma, or would they have told me that the first time?

thanks

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Christine.P's picture
Replies 8
Last reply 2/7/2016 - 2:51am

A brief history: I am stage 4A with current tumors in my left breast and near my sternum. I started Opdivo alone (insurange dragged its feet on the Yervoy combo and my doc didn't want to wait. That's a whole other story.) in November and will have my 5th dose tomorrow.

Scans last weeks showed "significant decrease in size in breast tumor." My surgeon wants to take it out anyway. (The ultrasound tech told me it was "half the size" - even though she's not supposed to tell patients anythins. Not sure about the other tumor; will find out the CAT scan results at my appt. tomorrow). I just recovered from several procedures - removal of two primary tumors, one on my leg so deep I needed a wound vac and skin graft, full axial lymph node removal, biopsies of the breast and sternum tumors, and a port implant. I just don't want more surgery right now if I don't have to. 

I know everyone's experience is different and what works for one may not work or be best for another, but I am just curious about others' opinions on surgery if tumors are clearly shrinking with chemo. 

Thank you!

Christine P. 

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My mother has battled stage 4 since October 2014. Successfully got WBR and taf-mek combo for 6 months, then started opdivo while continuing low dose taf for a further 6 months. During this time, when mek was onboard as well, she was hospitalized with hepatitis. 

Opdivo and low dose taf worked until October 2015. Then, we added Yervoy 2 doses, stopping taf. As my mother got fluid buildups and new multiple brain mets, we restarted low dose taf and added Temodar. That also didn't work and she is now also too weak to receive more Yervoy. The only option we can think of is restarting mekinist with the thought that maybe the aggressive cancer progression in her body is using the Mek pathway, its 2nd best option after it has found a way around RAF. Due to the high toxicity of 3 treatments at once, Mekinist was dropped from her regimen 6 months before she then progressed on Taf.

Has anyone had experience progressing on taf (tried twice) and then reintroducing mek? We understand that Taf/Mek is the same pathway but a Google search of diagrams of the pathway seem to suggest that the cancer tries RAF first, then MEK, then ERK (in trials?). 

Also - those who have tried Temodar, any knowledge as to a) how quickly it worked and b) how soon it is flushed out of the system? Google says halflife is 1.8 hours. Right now our last options to buy time are Temodar alone or Mekinist alone. 

 

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knittingirl's picture
Replies 1
Last reply 1/13/2016 - 4:44pm
Replies by: _Paul_

I followed a ipi/nivo treatment at the end of the year 2015, but after the third infusion I had to stop because of diarrhea and raise of liver enzyms. I have been on prednisone since December 14th at 60 mg /day and the doctor had to increase the dose at 80 mg per day on December 30 th as things got worst. He prescribed me also some budenoside.

Over the last 3 days, my diarrhea has improved and we have started to taper the prednison. I am now at 70 mg/day.

I have few appetite and the poor diet made me loose 8 kg. I am tired but stay positive as my diarrhea gets better and I still don't feel anymore the tumor in my groin. My liver enzyms are normal. I had also some hypothyroidism but it is now under control.

I heard that the tapering of prednisone can be bad. Also, when I will be recovered of this colitis, my goal is to start nivo only but I read that it can trigger also diarrhea.

I am now on medical leave, and I was wondering when I will feel better so I may go back to work . Can you work in a stressful environnment ( I teach in a demanding private school) on low dose of prednisone ?

Is anyone would share his or her experience ?

Thanks

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