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 3
Last reply 11/22/2017 - 5:55pm
Replies by: Dhva, jennunicorn, Anonymous

Has anyone experienced flushing of the face while being infused with Nivo?  The flushing (deep red) has occurred about halfway through the infusion for the past two (4 treatments so far) treatments. Severe fatigue at the same time and then a sweaty sheen. Is this common?

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/22/2017 - 1:03pm
Replies by: Anonymous, Richard_K, Prd10

Question:  once you have been on taf/mek, can zel still be an option if needed?

thanks in advance. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/22/2017 - 11:29am
Replies by: Anonymous, Polydad, Janner

I do not have a pathology report yet but received a call from the nurse today to let me know the biopsy of my nail matrix revealed no cancer. She said the report stated that the nail matrix tissue was completely normal. I’ve asked for a copy of the report obviously, but i was expecting some sort of explanation as to what is causing the pigmentation in my nail, this has been such a stress to me and I would like to have closure. Should I just accept that this is benign Melanonychia with no explanation? I’m afraid of a missed diagnosis. I’ve had three dermatologists look at it before the biopsy and all were of the opinion that it was benign. I’ve had it for at least 3 years and there has been no noticeable change (although I haven’t monitored it closely), can I be sure that if it were subungual melanoma it would have been revealed via the biopsy? 

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sweetaugust's picture
Replies 15
Last reply 11/22/2017 - 11:22am

Hi guys,

I haven't been on the site in ages.  I just haven't had the time with two jobs.  I wanted to update you all that I started the trial for Pembro (Keytruda) back on Halloween in 2012 and I came off of the trial back in January 2017.  I had a great response and am totally healthy.  So lucky! 

So I just wanted to check in and say hello and give a great update. 

All the best, Laurie

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/21/2017 - 9:24pm
Replies by: Anonymous, jennunicorn

I had my biopsy last Wednesday, my dermatologist told me I should have results by Monday (yesterday) and assured me I would have them before the holiday (Thursday). Still no results, and now I am freaking out thinking that the reason for the delay is because it is not going to be good......I emailed this morning and received a response from the nurse that they were still in process. Can someone please give me some insight, is the delay a bad thing? It's Kaiser, not sure if that makes a difference. My anxiety is so bad and this process has taken so much time, it's been 3 1/2 weeks since my initial appointment, and that was only because I was lucky enough to grab an appointment someone else canceled. 

Any thoughts or insight is appreciated......

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/21/2017 - 2:43pm
Replies by: Anonymous, jennunicorn, Becky

I had my biopsy yesterday for the streak I had under my nail. My dermatologist sampled my proximal nail matrix and did not remove my nail. I sent her an email today asking if a dermatopathologist or general pathologist would review the samples and she said it would be a general pathologist. Is this a big deal for the biopsy? It’s Kaiser so I don’t know if I have any other options.

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Radhe's picture
Replies 12
Last reply 11/21/2017 - 1:56pm

Hi all,
I'll start by saying I hope this finds you as well and content as you can be.

I am looking to connect with others/hear experiences about individuals who have had multiple primary melanomas and/or atypical mole syndrome; and how things have gone for you/what you have done to cope.

My brief history is that my first diagnosis was in 2009 with a stage 1 (.43 breslow/clark level III) on my back.  WLE came back with clean margins, but due to some discomfort on my part with the first dermatologist I saw who made the original diagnosis, I transferred my care to a nationally known private hospital that had melanoma specialists and cutaneous oncologists. There I underwent about 15 more biopsies since August 2009, that came back with things ranging from moderately atypical nevi to another melanoma (in situ). I've had 6 WLE's to manage the more severe atypical and the second primary melanoma. 

In an effort to do more than just "stay out of the sun" to prevent more melanoma, I sought the integration of a naturopath on my healthcare team. I am all for integrated health care and think there are pros and cons to this just like everything else, so I'm not trying to spur a big debate on that topic! What I will say is the naturpath zealously drew what seemed like gallons of my blood and had all these marker tests done. One, a TA-90 glycoprotein that is associated with immune response to melanoma, came back "abnormal."  I went out of my mind researching the sensitivity and specificity of this test, have read everything on PubMed, - even meeting with an oncologist who was involved in research to develop the test. Basically, no one can tell me why it is abnormal or if it being abnormal means anything because the research lines were pretty much dropped in the mid 2000’s.

I hate ambiguity, but am resolved that I will have to suck it up. It is NOT an FDA approved test and the naturopath probably did not have any business ordering it, but here I am with this stupid result.  It has been more than a year now (I stopped seeing the naturpath!) It makes me crazy because data on survival rates for people with positive TA 90 are not good, and the test was developed to detect “occult metastasis.” Like I need any more motivation to worry that my headache is not just a headache and is actually a tumor after having cancer 2X by age 32!

So now, since I have the genetic stuff that goes along with the atypical mole syndrome, two melanomas, this stupid positive TA 90, and many, many strange looking moles, I spin into this place where I can’t help but feel like this is chronic, and will someday take me out.  I’m not trying to be negative (PLEASE no power of positive thinking comments) – I am just honestly scared and it is starting to get the better of me the longer time wears on and the more things I have to have biopsied and re-excised.  I am surrendering to the fact that this is just how life will be, but I thought reaching out to those who have had to deal with multiple primary melanomas and/or atypical mole syndrome would be helpful to get tips on how y’all are coping with an ongoing issue.  Thoughts?

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Anonymous's picture
Replies 1
Last reply 11/21/2017 - 8:31am
Replies by: Abbygx2589

Partner had stage II melanoma removed 3 years ago and has received CT scans and blood work every 4-6 months since then. He has several lung nodules but they've been stable this whole time. Now one of the lung nodules has increased in size fairly significantly since his last scan 6 months ago. Have any of you heard of something like this before?

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Anonymous's picture
Anonymous
Replies 8
Last reply 11/20/2017 - 4:56pm
Replies by: Anonymous, Claroni10, Janner, ThinkingPositive, jennunicorn

How after a wide excision with a sentinel biopsy do you usually have results?  Also after the procedures how long should I expect to be out of work.  I have a fairly demanding job.  My excision will be on my back.

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momof4boys's picture
Replies 6
Last reply 11/20/2017 - 10:51am
Replies by: cancersnewnormal, Anonymous, Prd10, jennunicorn

Ok, so long story short... I was diagnosed nodular mel, 3b in 6/13 in my right calf. Did the SNB, CLND, and 1 1/2 years of Ipi 3mg. So I've had a couple things pop up in my lungs which have been biopsied and showed normal tissue so I probably get scanned way more than most people at this stage in the game. Anyways, my Ct last week showed a new, enhanced nodule on my left ovary, suspicious for metastatic disease. It's small, only 1.7 cm. So when my onc told me this initially I wasn't worried because I have had a follicle cyst on that same ovary in the past. But I could tell my Dr's demeanor had changed after reading the report. She didn't even notice the spot on a quick glance because that is not typical of melanoma. So what she said is because they are saying it is enhanced it actually has blood flow which is why it sucked up the contrast. My last scan was in May and it was a PET, my last CT was last Nov and I had a vag U/S in April of 2016 due to heavy bleeding/clotting. Nothing has ever showed on any of these scans and I've probably had 10 pet scans and 15 or more CT's since diagnoses in 2013. So ladies, any input here would be much appreciated as my mind is wandering today. I go back tomorrow for U/S. I have a couple in my church that is going through Ovarian cancer right now and he agreed it was his understanding if it has blood flow that would be more like an active tumor, right? I could see having a functional cyst show up on imaging but would it really have blood flow if it was just a normal cyst? BTW, Im 35.

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newmanmark's picture
Replies 5
Last reply 11/20/2017 - 12:27am

I have been on Opdivo/Yveroy for the past year with very good results.  We are now taking a break and will likely wait and watch what happens.  My wife and I have put off having a third child due to my health and the treatments I have been on.  I was wondering if anyone has had the discussion with their oncologist or knows of any literature on the subject?  I am male so my concern is whether the treatment has any affect on my sperm and is it not advised to have children while this immunotherapy is still working inside me?  Or is there a period of time that I should wait before conceiving?

Thanks!

Mark

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jjk17's picture
Replies 13
Last reply 11/19/2017 - 9:40pm

I am possibly going to start some treatment for my Stage III B melanoma. Doctor highly advises Nivolumab...Wanting some input from anyone who may have or is on this! We need to make a decision soon. The next step is to contact insurance ect. I am absolutely dreading that part.

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Ed Williams's picture
Replies 4
Last reply 11/19/2017 - 4:45pm

This is a link to a SITC "Society for Immunotherapy Of Cancer" really good, especially for those new to the Melanoma world. https://www.youtube.com/user/SITCancer

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obtu.bt's picture
Replies 3
Last reply 11/19/2017 - 2:42pm
Replies by: obtu.bt, TexMelanomex, Anonymous

Hi Folks,

Have you ever seen any comparison between pembro and opdivo?

What do you think about those 2 drugs?

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