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
Replies 2
Last reply 10/10/2014 - 6:46pm
Replies by: Anonymous

Nodular 3.5mm primary melenoma  on leg18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  Was on the ipi vs interferon trial and randomized into the 3mg ipi arm.  Completed all 8 doses of ipi in July and just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  Thank you in advance for any suggestions.

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Jewel's picture
Replies 3
Last reply 10/6/2014 - 2:49pm
Replies by: Teochasse, Jewel

Hello,

I was hoping to be writing on here that we just celebrated 3 yrs NED from a stage 3c diagnoses. Instead we got the news that my husband has a node showing up in his pelvis. 2011 CLND in groin 3/19 nodes positive, original primary on leg. Go for PET tomorrow. Depending on what PET shows our oncologist suggest surgery. What should we be planning after? Radiation was a thought. If the surgery goes well he will be back to NED status which doesn't offer much in ways of options. Will take any and all thoughts. Thank you

Jewel

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cbe's picture
Replies 5
Last reply 10/7/2014 - 1:16pm
Replies by: cbe, sweetaugust, RJoeyB, Bubbles

My 48 year old husband has stage IV melanoma (N-RAS mutation), currently in several lymph nodes and spots on liver. After 2 rounds of ippy (stopped because of elevated liver functions), he is now on Merck anti-PD 1 (Keytruda). Despite being told that there are few side effects, he's feeling quite sick --tired, lack of appetite, low grade fever, persistent non-productive cough. (He had no side effects from ippy) He's on 20mg of prednizone--he's tried going off it but then he's completely wiped out. Also being treated for Thrush which helps somewhat.  CT scan last week showed liver spots still there, possibly bigger, but no spread to lungs or abdomen. Doctor considering adding MEK inhibitor.

How long before we should expect to see effects from the anti-PD 1? Has anyone had these kind of side effects from anti-PD 1? We can't tell if its from that, the steroid, or the cancer... Anyone have experience adding a MEK inhibitor for N-RAS mutated melanoma?

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katieherwig's picture
Replies 8
Last reply 10/7/2014 - 12:02pm

I was diagnosed six years ago with Stage 3a while 22 weeks pregnant. I went through one year of interferon and had been cancer free. On July 28, 2014 I was diagosed with Stage 4. I have melanoma in my liver, lungs, bone, and had in my ovaries. I had a intense surgery on August 8, 2014 that removed my ovaries. 

On August 20, 2014 I started my tafinlar treatment. On November 14, I go back to MD Anderson to have scans and possibly start my Yervoy treatment. 

i have a great husband and sweet 6 year old daughter. I am still able to work full time and really feel pretty good. Sometimes I wonder if I am in denial or just handleing this well. To be honest I'm not sure which one it is. I do have a strong faith in God. But I'm still scared and sad. 

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Rocco's picture
Replies 2
Last reply 10/5/2014 - 11:37am
Replies by: Bubbles, Janner

A dear friend of mine just notifed me her Derm gave her a dx of melanoma in situ.  Very concerned as her brother just recently passed away from mel.  I'm not familiar with in situ and what all tests they'll run on her, etc  Her path info is as follows:

"Malignant melanoma, predominantly insitu, superficial spreading type.  Dept of invasion is 0.29mm, Clark's level II.  Melanoma is in a horizontal growth phase."

Her next step is surgery - assuming to get clear margins, etc..  She has an upcoming consult with Dr. Amod Sarnaik, surgical Onc at Moffit in Tampa. 

 Can anyone chime in on what she should request given the family history and/or what she should expect.  Also any input on Moffit in Tampa and/or Dr. Sarnaik would be appreciated.

Thanks -

Rocco

 

Luke 1:37

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Rocco's picture
Replies 5
Last reply 10/5/2014 - 11:08am

Thanks for the good thoughts and vibes last week.  Amazing how quickly the fear of the unknown came upon me while waiting for the all clear...

Last week I posted that my PCP had suggested I get a CT the neck to look at what appeared to be a small lump under my jaw/neck area.  So went to DFCI in Boston and had my Onc order it up.  Had the scan - it showed nothing (YEAH!), followed it with an ultrasound to be sure - still nothing.  Current thought it is a submadibular gland issue (could be blocked) so I'm off to an ENT specialist to figure it out.  Bottom-line - no mel....<insert deep cleansing breath here>. 

-Rocco, Stage IV since 2005, Ipi responder, NED since 2009

Luke 1:37

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cruzinsusan's picture
Replies 2
Last reply 10/6/2014 - 9:14am
Replies by: mary1233, Becky

Sorry to be on here!!  Just dianosed wtih very rare and very grim Oral mucosal melanoma!!

At stage one in sit tu and all pet scan are clear.  There is not much reasearch on this rare meanoma so I am out here looking for anything that can give me more hope!!

Thanks Suz

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ecc26's picture
Replies 9
Last reply 10/6/2014 - 6:52pm

I feel like a yoyo these days. I finally got the path report (last week) from the mass they removed from my brain about 2 weeks ago: all radiation necrosis- no live cells. 

In some ways that's great- better than having active disease! But now they can't seem to decide what to do with me. Pre-surgery the plan was to give me about 3 weeks to heal after the surgery then bring me back for gamma knife to the surgical area and a few other spots that were seen on the MRI in non surgically accessible areas. That was fine, but with the path report now they're concerned that perhaps that's not the best course of action given that what they took out was radiation necrosis. If the other spots are as well then more radiation is NOT good. I feel like I'm being tugged back and forth between some who still think I should get a gamma knife and those who don't. To be honest, not that gamma knife is such a big deal, but if I didn't have to do it, I'd be perfectly happy. 

At the moment the plan is for me to go back to the hospital where the surgery was done (Roswell Park in Buffalo, NY) on Monday for a follow up MRI. If things look at least stable, no gamma knife. If there's growth or anything new- the conversation starts all over again. I'm really hoping things are stable and I (and  my husband) can get a break from all travel and doctors stuff. I'm still not cleared to drive myself after the surgery (even though I never had any symptoms of any kind pre or post surgery and have been back to work full time this past week). Having another gamma knife would delay that clearance for sure. 

I'm happily off all medications except the anti-seizure, which I suspect will continue for at least a few more weeks.

On the bright side- I got my first dose of the now FDA approved PD-1 here locally yesterday! So excited to be back on that and to not have to drive over 6 hrs to get it! Even with the surgery I'm really not even off schedule with it (maybe a couple of days as I used to get them on Mondays and this one was on a Friday). Super excited I can get it at home now. Yesterday was dose number 6!

Wishing everyone out there all the best as you do battle with this horrible disease. Hold on to hope and remind yourself that it's becoming more managable every day- I am now almost 3 years since progressing to stage IV, and 2 years and 3 months since my first brain mets. I've been through every FDA approved therapy (currently on the Merk PD-1) had whole brain radiation, 2 (possibly soon to be 3) rounds of gamma knife, and a craniotomy for brain mets and I'm still here! You can do this, it may seem like an impossibility, but you can do this! If I can, you can

 

-Eva

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BrianP's picture
Replies 17
Last reply 10/7/2014 - 9:43pm

Just got my third 12 week scan in a row with the two key phases "Grossly stable" and "no new metastasis".  Not sure why they use the term "grossly stable".  I think "awesomely stable" is a better description.

For a quick recap, I started last August in a Nivo/Ipi/Nivo sequential trial with 4 cm and 3 cm nodes around the liver area.  After 12 weeks of Nivo the two nodes were about 40% smaller.  After the next 12 weeks of Ipi nodes were mostly unchanged but had numerous new mets in my lungs.  Ever since returning to nivo the lung mets have completely resolved and the two original nodes are holding steady.   

The durability reports of the anti-PD1 drugs gives me hope that I can stay this way for quite some time.  Not sure what will be next come August when the trial is scheduled to end.  I listen with great interest to those on the tip of the spear like Celeste and Laurie to see what they are hearing on that front.  Right now I'm just counting my blessings and so thankful for these new wonderful drug options.

Brian

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Invented by Array BioPharma Inc. and licensed to Novartis in 2010, binimetinib is a small molecule selective inhibitor of the kinases MEK1 and MEK2.  
 

Results from the 117 patient Phase 2 study showed median progression free survival (mPFS) of 3.6 months and objective response rate (ORR) of 14.5%, including one patient who achieved a complete response.  These findings were consistent with previously disclosed interim results at the American Society of Clinical Oncology 2012 annual meeting.  In addition, the median overall survival (mOS) of 12.2 months is encouraging for this patient population, which has a particularly poor prognosis.  NEMO, a global phase 3 trial currently enrolling patients with NRAS mutant melanoma, is designed to measure the difference in PFS between patients treated with binimetinib versus those treated with dacarbazine, a current standard of care.

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

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Jewel's picture
Replies 3
Last reply 10/4/2014 - 12:17am
Replies by: Janner, Squash, Teochasse

My husband had a clnd in his left groin in 2011. His lastest scan is showing a hot node in his pelvis. If this turns out to be melanoma would that take him from stage 3 to 4? We find out Monday.

Thank you

Jewel

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lidiapeters's picture
Replies 2
Last reply 10/4/2014 - 12:32am
Replies by: Janner, arthurjedi007

In the beginning of 2013 I went to my doctor with concerns about a pea sized lump on my upper right chest. I had noticed it a few months before and had kept an eye on it as my parents have both had  skin cancer, and my entire family has red hair, fair skin, and countless bad burns over the years. My lump had no colour, but after about 3 months it grew a red coloured like mole on it....my doctor booked me an appointment with a dermatologist. Took a while to get in to see him as we only have 3 dermatologists in our area, anyways as soon as he looked at my lump with his scope, he told me it looked like melanoma and then he froze it, told me I would need to come back for a shave biopsey. A month later he did the shave biopsey and told me to come back in a month for the results. When I went back for my results he told me it was not cancerous but he told me he saved my life that day?? He said he did not get the entire lump and it had to come out because it had the potential to change very quickly so he was sending me to a plastic surgeon for a wide excision.The plastic surgeon's office called me the next day and the day after that I was at the hospital for my wide excision. I asked for a copy of my pathology report, that is when I found this site and posted (My Pathology report word for word, What does it mean? 9/16/2013)

TISSUE SUBMITTED

1 shave/ excisional biopsy, right chest

GROSS DESCRIPTION

SCO one piece of shave/ excisional biopsy tissue from the right chest measuring 0.8 x 0.6 x 0.1cm

the specimen is trisected and all tissue embedded.

MICROSCOPIC DESCRIPTION

Multiple serial sections of the submitted skin biopsy sample have been examined. There is a somewhat asymmetrical 4 to 5 mm diameter melanocytic lesion in the center of the skin surface. Most of the S-100 protein positive nevus cells are seen in the dermis and there is associated marked lymphocytic infiltrate suggesting some degree of regression. A few junctional nests are noted. These are epithelloid cells with larger nuclei and nucleoli. Biopsy findings suggest the so called Spark's nevus (ie, nevus with features of Spitz nevus and Clarks nevus). Considering older age and histological atypia with some dermal nevus cells present at the dermal margin focally, conservative re-excision of the lesional area recommended.

DIAGNOSIS

SHAVE/EXCISIONAL BIOPSY, RIGHT CHEST; ATYPICAL SPITZ NEVUS; CONSERVATIVE RE-EXCISION OF LESIONAL AREA RECOMMENDED

 

. The plastic surgeon told me my lump was childhood melanoma, which he said isn't really melanoma at all and is completely safe. I went back for my second pathology report on my wide excision and he told me the margins were clean and there was nothing to worry about. Which brings me to today... I have another spot which looks like the first lump, but it is smaller, it is a couple inches from the scar of my excision, my doctor has told me to keep an eye on it for change. I have been so sick since just after my wide excision and everything my doctor has been doing for me has not helped and I am wondering if my physical symptoms have anything to do with these lumps? I have low blood count and low iron, I am always cold or sweating, aches and pains, itchy in my groin area and hands that keeps me up at night, constant severe headaches,  I feel like my brain is in a fog just cant think properly and I am so beyond exhausted all the time it is really affecting my daily life.....I am a different person than I was 2 years ago. I am at my wits end and so frustrated. Is it possible I was misdiagnosed? Do clean margins means its over and done with, nothing to worry about? I am 48 years old!! How often is someone my age diagnosed with childhood melanoma? I was recommended to get a second opinion on my first pathology report because of my age but opted to wait on my second report as I had posted just a day before getting those results... that my margins were clean, thought I had nothing to worry about but now am wondering with how I have been feeling for so long? Also in my pathology report where it says 'associated marked lymphocitic infiltrate' Does anyone know what exactly that means?

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Twistermom3's picture
Replies 1
Last reply 10/4/2014 - 9:43am
Replies by: Janner

So here's where I am. At my regular check up last month I asked my GP about a change in a mole on my face that had developed a small dark spot. She also noticed one on my back and sent me to a dermatologist. The dermatologist stated that there were actually two on my back she thought questionable and she recommended a biopsy on those before removing anything on my face. One was fairly small and she removed the entire mole and the biopsy for that came back as abnormal, not melonoma. The second was larger and she removed only part for biopsy. That one came back as melonoma in situ. I go back next week to have the entire mole removed and to re-evaluate the one on my face. 

I"m not even sure what to ask now. Was it a mistake not to remove the entire larger mole the first time? Too late to change it now, but I don't want to make things worse. If the one on my face also comes back as a melanoma does that mean by definition it has spread?

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Okay now that I am over the rush of blood to my head I am craving information from people's personal experience. Less than three weeks ago I had a biopsy for a mole, three days ago I had a wide margin excision on my right calf and a SNLB. Just got the biopsy report... One node with one "tumor" cell. They are talking about more surgery, but I haven't seen the oncologist yet. That appointment is Wednesday. I am crazy active, freaked by the idea of being laid up in bed for long periods of time. Stories will help.

 

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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