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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Kim K's picture
Replies 6
Last reply 6/30/2016 - 3:13am

Just made 6 years this week.....  Was going to chime in with the other long term NED'ers.  Great article in cure about immunotherapy & targeted therapy, timing etc.  See post below.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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JoshF's picture
Replies 7
Last reply 6/15/2016 - 6:09pm

I know I've seen this or read this somewhere but I'm on overload...too much waiting, researching wondering what to do. Anyway simple question...

If one has failed ipi...then failed nivo. What is the possibility of responding to combo?

I went into complete remission on ipi...started Nivo late in 2015(dec) when I only had 1 subq and then as many of you know...it came back in many places and grew quickly over 6 months.

Thanks

Josh

Let's work for better treatments....for a cure!!!!

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kpcollins31's picture
Replies 3
Last reply 6/16/2016 - 7:45pm

Thought I would post another hopeful message... scans yesterday came back clear again and I continue to be NED just about 2.5 years following a bowel resection in Jan 2014 where the melanoma had spread to my small intestine. Aside from that last surgery, I have not required any treatment but it is good to know that there are many more options available now than when I started this journey. I have been on the melanoma roller coaster for over 5 years now and that stage 4 diagnosis brings with it some anxiety and dark thoughts... but my message to those going through the same thing is to stay hopeful. NED could be one surgery or treatment away.

Kevin

 

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The current issue of Cure magazine is all about Melanoma.

The online version can be read here.  See:

http://www.curetoday.com/publications/cure/2016/melanoma-2016

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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dodgedh2's picture
Replies 7
Last reply 6/16/2016 - 8:00pm

I still browse this forum since it helped me through many difficult times. Just wanted to pop in and say that it is officially 8 years now of being NED at Stage 4. There is hope out there, but NED doesn't take away all the worry about recurrance. I'm living life differntly than I was before, and starting to feel that i do have a future. Still in my mind that I may not have a long future, but making evry day count with the grandkids and family now!

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FriendofMari's picture
Replies 4
Last reply 6/17/2016 - 10:55am

Hello my friends, As you know, my friend Mari is Fighting  Malignant melanoma with mts in liver and bones. The last Pet Scan showed 5 stable mts in liver, 3 stable mts on bones and one increased mts in liver (on the last pets it was 3.1 sm, now 4.1) - after 5 infusion of Keitryda.  Doctor said that Keytruda worked partially and as the analyses said Cd-117 positive in tumors, Doctor decided to continue treatment with Gleevec (Imatinib), once per day, 400 mg, for two months and check-up after two months. Is there any results, researches, private experience about this case, about this mutation? Can you help us? we are a  bit dissapointed...

thank you in advace

FriendofMari

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/14/2016 - 5:56pm
Replies by: Anonymous, Janner, jennunicorn

Hello,

I had a Stage 1 melanoma and lymph node biopsy in 2001.

A few days ago I noticed that a mole on my back has a softer texture. I was checking it out the other day and a small piece of pigment came off in my hand. It's in a spot that is hard for me to see (middle low back). It's the darkest mole I have and is probably about 3 mm in diameter. I've had it for a couple years but it seems to have changed in texture recently. I was pregnant last year and noticed a lot of new moles since then.

I'm wondering if a soft or peeling mole can be a sign of melanoma, or if normal moles can do this as well. I have never noticed this before and it definitely concerned me.

Thank you

 

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MWlady's picture
Replies 8
Last reply 6/15/2016 - 12:32pm
Replies by: marta010, MWlady, Fen, MoiraM

Hello all, 

This is my first ever post, I've been reading the posts for months now, finallly "brave" enough to post. My sister in law ( SIL) 59 year old was diagnosed 3 years ago stage 3,, bottom of foot ulcerated tumor ( she thought it was a blister that wouldn't heal) It was removed and lymph nodes in left side of groin removed, "microscopic" traces in nodes, all this done at Mayo Clinic, no post treatment, just scans and check ups. August of 2015 she felt a lump in her thigh, Sept 2015 she began the Yervoy/Opdivo. She is Braf NEGATIVE. Jan 2016 those treatments were stopped. Jan 2016 3 tumors removed from her thigh. Now there is 5 tumors in the same thigh, spot on lung, one on her back, and in her pelvic bone, stage 4. In May she began IL 2 at University Of Minnesota Medical Center. We live in a VERY rural area, UM is 5 hours away. Thank GOD for the Hope Lodge, allowing me ot be there with her. First round of IL2 she did 7 bags, Capillary leak, rigors, minor vomiting. Her chest became so heavy with all the fluid and leak, O2 and BP were slow rebounding. Second round, side effects much milder, she ended at 5 bags, I think fear of the last time prevented her from pushing for more. They are delaying round 3 for 2 weeks to give her more time to recover. Through all of this she is not in any pain or discomfort from the cancer itself, thank GOD! Her oncologist told her after the bone discovery "statistically she has 2 years". Now while awaiting for round 3, scheduled for next week, a brand new ulcerated tumor on her other foot, which they didn't seem concerned about when she initially told them, now that it's ulcerated they will do a biopsy. WIll this affect her further treatments? She has never lost any weight during all of this, and last week she lost 4lbs and her appetite is disappearing. Has anyone expericend anything like this? Or is this the beginning of the end? Depression has taken hold of her, she is isolating, they gave her somethign for depression. Does this mean the IL2 is not working? Is it worth going for another round of it? Any advice or help would be much appreciated. It's heartbreaking. I hope this all made sense, and look foward to suggestions or advice. Thank you all for being so brave sharing your stories, good and bad. Melanoma SUCKS! 

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Here's a great new column by a melanoma specialist from Mayo Clinic:

http://melanomainternational.org/2016/06/june-13-2016-asco-update-on-mel...

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Aaron's picture
Replies 5
Last reply 6/13/2016 - 6:12pm
Replies by: Aaron, Ed Williams, MoiraM

Hey all, been following this board for several months now.  A couple of years ago I was diagnosed with melanoma.  Had a lymphedectomy with only 1 out of 32 lymph nodes showing signs of disease.  It was considered micro metastasis and no other treatment was deemed necessary.  In Feb. I started experiencing slight discomfort (not pain) in my side and pursued more investigation.  They found a lymph node that was enlarged to about the size of a golf ball.  Then I had a CT scan and they discovered a secondary lymph node the size of a marble. I thought to my self this isn't so bad, I'll have surgery and follow up with some sort of therapy and be on my way.  Went to a specialist and it was then discovered that I had faint glimmers of activity in approximately 10 different nodes and it was stated that surgery would not solve my problem.  Labeled stage 4 and signed up for an ippi/nivo combo trial where it is being determined whether or not immunotherapy should be administered before or after BRAF inhibitors.  I was randomized for the Immuno arm (the arm I was hoping for).  Had my first treatment 7 days ago.  I have experienced ZERO side effects (which I realize there is the possibility I may not) but was wondering on average how far out do some symptoms start to occur typically.  Some things I have started experience:  the unpleasant pressure that first occured that made me inverstigate further turned into lower back pain, this back pain in the past week has disappeared since treatment and my side discomfort is even subsiding, I do feel I am more susceptable to overheating but we are also experiencing our first summer heat wave where temps are mid 90s,  That is about it.  Thank you for any comments you might have.  I am not hoping for side effects but at the same time I think experiencing them would give me some relief that I fighting this disease.  On the plus side, since I am not experiencing side effects I am enjoying my summer with my sons. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/13/2016 - 9:29am
Replies by: Janner, Anonymous

https://imagizer.imageshack.us/v2/320xq90/r/922/LXbPrZ.png

There's a picture. It looks quite innocent apart from the yellow tail. I'm already getting my dermatology to remove 3 miles I don't like and honestly it would be way over my budget to remove one more unless it's really necessary.

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Bubbles's picture
Replies 11
Last reply 6/14/2016 - 12:06pm
Replies by: vickiaa0529, Bubbles, Anonymous, MoiraM, Charlie S, jennunicorn

Since May 22 I've posted the best abstracts I could glean from ASCO 2016.  I did not include all of them.  But I grouped them and noted what seemed most pertinent to melanoma treatment today and in the future...as best I could.  This last post is a little more "out there" than the rest...but the one addressing what general oncologists know and use from trial data is rather horrifying and downright embarassing.  Many us of old-timers here repeat it over and over....if you are dealing with melanoma....you NEED a melanoma specialist!!!  Not your local onc.  Not an oncology surgeon.  You may get help from these folks, along with oncology radiologists, dermatologists and many others.  But to help you find your treatment and supervise your care...a melanoma specialist and usually an institution that treats lots of melanoma patients will serve you best.  And when defining a melanomoma specialist...this is not a one-trick pony who may have done something well in the 80's.  It must be someone who is willing to move from past treatments, from past methods of treating side effects...to the best and the now.  Just think...the treatment (Nivolumab/Opdivo) that I am certain saved my life was not FDA approved in 2010 when I took it!  It was certainly not available in 2003 when I first started all this mess!!!  You need someone in your corner who KNOWS the latest...and is willing to help you find what's next!!!!

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-final-odds-and-endsa-study.html

Hope it helps.  I wish you all my best.  Celeste

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KimberlyVU's picture
Replies 3
Last reply 6/16/2016 - 2:51am

Hello everyone

I was diagnosed 1b at the end of April and had my WLE and SLNB last Monday. I have the appointment for my pathology results on Thursday June 16th. 

I am really overwhelmed with all of the information on treatment and I hope you all can help. I saw the recent post of Ccarney83 with a lot of great information against interferon. 

What is recommended if the nodes are negative? What about positive?

Are people able to work during these treatments?

How do you feel about complete lymph node dissection in the case of positive nodes?

Thank you all for your experience and sharing. 

Kimberly

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/14/2016 - 7:54pm
Replies by: Anonymous

Noticed a mole about a year ago on my leg.  It looked brown, was very small maybe 3-4mm but was a perfect circle and shiny.  I picked at it and poked at it for a year and it began to look pink, it never grew or changed.  

 

I i had my dermatologist remove it. He used a shave biopsy. I got a call two weeks later saying i needed to come back in.  The Dermatopathologist diagnosed it as a spitz Nevus.   I know these moles are oddities and the doctor told me mine really didn't concern the dermatopathologist.  This was at a rather large practice.  So they removed more. I believe 4mm-5mm margins and I got the word yesteday that no cells were detected and the original shave got it all. Is this a large enough excision ? 

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JoshF's picture
Replies 7
Last reply 6/13/2016 - 10:53am

Hi guys-

Thought I'd check in after my visit at MD Anderson. Looking at a t-cell trial with Il-2 followed by ipi. A bit different than trial that I do qualify for at Loyola Universiy Med Center. Not sure which would be better as they do cell modification at Loyola. Either way I have to have the specific HLA expression and Mart-1 to even get in trial at MD. Friday afternoon apt wasn't ideal but started moving things along....I hate the waiting, it's difficult. They're also setting me up with surgeon to harvest tumor for possible TIL in future. They offered that but they're out until Aug/Sept as they only can do 2 patients per month. I hate the decisions, the waiting...what's best etc.. Thank you Ed for sharing a bunch of info in a previous post. The TCR and TIL therapies sound promising but doesn't seem much better than PD-1 in terms of response. In future the doc said things will probably only improve as they learn to tweak with modifications, combine other therapies. At this point being wild type, what are my options? We all need research and options to accelerate....I know myself and many others would like to see kids grow up...maybe meet a grandchild. Sorry, tired and rambling. Thank you to everyone for support, sharing info and giving inspiration. Praying for all of you!

Josh

Let's work for better treatments....for a cure!!!!

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