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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jbronicki's picture
Replies 3
Last reply 4/21/2015 - 10:26am
Replies by: dentholla, JoshF, yazziemac

Hi all,

Just to keep the trend going, wanted to post about our news yesterday from MD Anderson.  Last year in February, my 48 yr old husband was diagnosed with Melanoma.  Believe it or not, he had a 19 mm (almost 2 cm) lesion on his upper left back.  Apparently, it had grown immensely in 6 months and my daughter noticed it while they were swimming and then he said it woke him up one night, felt like he was lying on a marble.  He actually never told me about it and I didn't see because he gets ready for work and leaves about an hour before I do.  So he went to a dermatologist up by his work.    I can still remember bursting into tears when I first saw it before his surgery and how I could have missed it.  He ended up telling me he had melanoma while we were watching a movie on Saturday night  and it finally made sense why that afternoon he told me where the life insurance policies were (I couldn't figure out why he was telling me where the policies were). I got on the phone with MD Anderson the following Monday after I had calmed down. The Saturday night he told me he gave me the path report the doctor had given him.    I had the path report (my husband actually never looked at it) and it had the highest ratings for everything, depth, Clark's, etc and all the prognostic factors were off the charts.  I was a medical librarian and I used to work with biostatisticians that work on outcome studies so I looked up the evidence-based research outcomes that night and knew it was not good.I got on the phone with MD Anderson the following Monday after I had calmed down and scheduled his surgery for the following week.  I also burst into tears randomly at work that week, it was pretty intense.

My husband has a scar almost across half his upper back, he actually went back to work the day after surgery.  The tumor had no skin component so our first appointment with oncology after the surgery but before the scans, they said he was probably stage 3 or 4 nodular melanoma (of course one of the most aggressive) and considered it metastatic melanoma.  SNB came back negative though and also his scans later that month came back negative. 

Just had our 1 year scans yesterday and they came back clear.  Never thought we would be here, still remember reading that pathology report and then researching the various outcomes with his numbers and breaking down.  Been a wonderfully hard year and we seem to live in 4 month increment, but hard to believe so far NED.  I hope we can pay it back to whoever needs it. 

Many hugs to all of you out there, I've been on this board for the past year.

Thanks,

Jackie <3

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MixtaJones's picture
Replies 4
Last reply 4/21/2015 - 10:12am

Hey all,

 

I just got a call from my derm talling me that a mole they just did a shave biopsy on came back as a Superficial Spreading  Melanoma. Clark level 3. This mole was about 8 inches from my "primary" site on my back which was removed about 2 years ago. I have already had 22 lymph nodes removed, Radiation, and Yervoy to treat remaining tumors. The mole they removed has been there for years but every doctor has said it is nothing to worry about until my derm agreed to take it off.

Is this a second "primary" site? Or is it a sign of the first site spreading? I don't see my Onc till Wednesday ans I am a little freaked out. Has anyone had more then 1 melignant mole?

 

 

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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eturner82's picture
Replies 4
Last reply 4/20/2015 - 10:41pm

Just wanted you to know thinking of you and saying a prayer!!

Emily

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/20/2015 - 10:36pm
Replies by: Bubbles

Anyone heard Weber was leaving for NY?

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jennifer83's picture
Replies 3
Last reply 4/20/2015 - 1:25pm
Replies by: Anonymous, MattF, Janner

Hi there,

My surgeon told me I was cured of my melonoma, originally diagnosed in November 2014... stage 1B - middle right side of my back... WLE and SNLB (came back negative).  I've been going to my three month check ups and have had a few more biopsies that have came back negative.  

Just this last week, my WLE scar has developed quite a lump and is super itchy.  The scar is still a deep pink/purple and has always had a textured feeling.  The color hasn't changed, but you can see the lump area has expanded the color, marble size.  

Of course, I'm going to make an appt with my derm first thing on Monday - but I was just wondering about thoughts/ looking for support/ seeking experiences.  I'm a very positive person and am banking on this just being scar tissue that may be inflammed.  Has nyone here had a similar experience?  What was your outcome?  

Thanks for listening!
 

Jennifer

Jennifer

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MindyD's picture
Replies 15
Last reply 4/20/2015 - 1:25pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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Aiden's picture
Replies 4
Last reply 4/20/2015 - 1:08pm
Replies by: looptwelve, Aiden, kathycmc

Hi everyone!

Here is my story.

I am 35 white male. 

In january 2015 I went to visit my new primary doctor.  I was wearing simple black tshirt and just like that my primary doctor said, " You do have lots of moles on you, you should see a dermatologist. We white people tend to have skin cancer"  Well, that  wasn't my purpose of that visit. Ok.

Anyway, after that visit I schedule a visit to the dermalogist. 

End of January 2015 I am in the office seeing dermatologist. After quick conversation, she told me to undress for the full body skin check. Ok 

She started examining my skin walking around. Suddenly she stopped and said " you do have suspicious mole on your back. I have to do the biopsy of it"  I said are you serious?  Doctor said yes, you have 50/50 to have skin cancer. I was in shock. 

Biopsy done. I am waiting 10 days to find out my final results. Very difficult time for me. 

Finally on Friday afternoon my dermatologist called and said. " I have a good and bad news. Bad news is it's Melanoma, Melanoma in Situ found in the mole, good news it's very early. It's just on the surface of the skin, and didn't even break the first layer of the skin" 

What now, I asked? She said " I don't want you to worry about it. It's very early and the prognosis are great in your case. You need to have a surgery to be done soon. After that you will be under regular check ups" Ok

Mid of February 2015 I had my surgery done at University of Chicago Hospital.  After my surgery I had my final results. All margins are clear. No additional treatment. Continue fallow up with dermatologist. 

Eventhough, my case was cought early, I can't find a peace. I think about that everyday, and trying to stay positive. Soon I am going to see my dermatologist for the first check up. 

How to live with the thought of being diagnosed with skin cancer?

Thank you all for reading my story  

Aiden. 

 

 

 

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Anonymous's picture
Replies 7
Last reply 4/20/2015 - 12:59pm

For those with Brain mets, how do you deal with them?  Are any of the therapies that you are on crossing the blood brain barrier?  Do you get yours radiated as they pop up?  And does it work?

My dad has had 3 brain mets to date, not counting the new one found today.  2 were resected via a craniotomy and then radiated.  The last one was radiated.  All 3 were totally gone for almost the past year.  Then scans today revealed another one popping up (only about 1cm).  They feel that they can radiate it easy enough, but I'm just scared of what is next.  There are clearly cells in his brain with melanoma, so this could happen again at any time.  What is working to rid the brain of melanoma, other than surgery and radiation?

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braunerk's picture
Replies 2
Last reply 4/20/2015 - 11:36am
Replies by: braunerk, Ed Williams

Is there any difference with different therapies with having 
Acral version of Melanoma I have Acral and have not responded to Ippi or it seems Keytruda. Don't know where to go next for treatment. My doc is thinking doing  Ippi again but not sure. Any suggestions would be helpful 

 

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jahendry12's picture
Replies 4
Last reply 4/20/2015 - 11:32am

I wanted to post a question that I have not been able to get answered via internet searches.

My husband is Stage IV and NED for over 2 years now :)  I know that we will be having scans for the rest of his life, but if he remains NED for > 5 years, would he then be considered a lower stage or is it once Stage IV, always stage IV?

Thanks for any input.

 

Julie

 

 

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Janner's picture
Replies 4
Last reply 4/20/2015 - 11:12am
Replies by: Janner, ldub, Bubbles, Aiden

 I was diagnosed stage 1a (translates to stage 1b with today's staging) 23 years ago.  I've had two other primaries but am still stage 1b. I just realized that my adoptive father passed away 1 year ago on my anniversary from melanoma.  The anniversary was forgotten last year but I realized the connection tonight when someone emailed me about my responses here and I put into words my long history.  I miss my Dad but he was 89 and had lived a full long life.  The irony that he would get melanoma and pass away from it after my long history never failed to amaze me.  

Anyway, there are lots of early stagers who go on with life and stay early stage!  Never assume the worst!

http://www.MelanomaResources.info

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JerryfromFauq's picture
Replies 4
Last reply 4/20/2015 - 10:09am
Replies by: mary1233, Anonymous, tschmith

I am looking for info on c-kit mucosal melaonma patients responses to Ipi.  Not much info found.  Here is one article.          The overall response rate by irRC in evaluable patients was 6.7% (2 of 30 patients; . By the mWHO criteria, at the time of the first radiographic assessment (approximately week 12), one CR, one PR, and five SD cases were observed. Twenty-three patients had PD at the time of the first scan. One patient classified as irSD was reclassified as having PD by mWHO given the appearance of new lesions. The overall response rate in evaluable patients by mWHO (6.7%, 2 of 30 patients) was identical to the response rate by the irRC.

   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063400/

These numbers are scary.

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

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lesli's picture
Replies 4
Last reply 4/20/2015 - 8:00am
Replies by: _Paul_, arthurjedi007, lesli

Hi All,  my scans at 7.5 weeks on Keytruda are showing universal growth in all lesioins.  In all hope, could it be inflammation?  How long to proceed treatment before considering another option (there is still a question about what that is)?  That is, what is the definition of "failed" on Keytruda?

Thanks in advance. Leslie

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410451's picture
Replies 12
Last reply 4/19/2015 - 11:20pm

My dad was diagnosed with melanoma last summer (originally diagnosed as Stage 2b but Breslow scale 5).  His primary tumor on his trunk was removed in May.  In October it was discovered it had spread to nearby lymph nodes and a baseball sized lymph node full of cancer was removed.  The radiation oncologist strongly encouraged radiation (which I tried to discourage my dad from taking).  In December he started 30 sessions of radiation.  CT scans after radiation showed the cancer had spread to both lungs (at least 10 spots).

Dad is 73 and has less than a healthy heart and lungs before the cancer had metastasized to his lungs and several other issues common with aging.  Because of the side effects of treatment and the low success rate, he has opted not to take treatments.  He could change his mind but  would have to before the cancer burden was too high on his body. 

Recently he has feeling good and had returned to normal activities. He's still pretty active and enjoys outdoor activities, wood working, etc.  But, most of this week he has felt nauseous and has slept a lot during the day.  This is very unusual for him.  So, at this point, I would like to think it's just some bug he's picked up but can't help but wonder if it's the cancer making him sick.  I will call the nurse on Monday to get her input but I also would appreciate if others would share their knowledge.  I live a few hours away from my dad so I know a time will come when I will have to spend a lot more time taking care of him but with a full time job, my own family, the unknown is tough.  So, if anyone has a family member that has gone through something similar as my dad, I would appreciate the candid feedback.

Thank you.

Melissa

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arthurjedi007's picture
Replies 15
Last reply 4/19/2015 - 10:23pm

I have my next scan Monday and my doc is already thinking I should be on his ERK trial. Zelboraf and the taf/mek combo both failed me wih zelboraf having really poor quality of life side affects while I was on the med. So I'm very Leary of these targeted therapies for me. If they had shrank even one tumor I might be less skeptical but they didn't. Yervoy didn't shrink anything either. Only keytruda has done that. So for me at least I don't see how this ERK will be any different. It just targets a gene further up the same chain. Granted I'm glad they have something.

They did say they have had 2 people have partial remission so it does help some people. So am I being stupid to not do this or is there something better for me?

For about 4 weeks I've been feeling great and my LDH has continued to drop to 301. Way better than 840 in January. I can walk non stop for 30 minutes again. Sure I have issues and pains and tire out fairly quickly but nothing like a few months ago before the ton of radiation which I think I've fully recovered from.

I think TIL is a good option since Im strong enough now but I doubt if the scan will show any non radiated tumor they can harvest but it might. They wouldn't do the harvest and store it for later at Bethesda at least not for me when I asked.

i also think pd1 combined with some other med like maybe antilag3 might be good for me. The plan was after this scan if needed to go to dr Gajewski in Chicago to see what he thinks is best for me since he has that trial.

Otherwise I'm not seeing other options for me. Most I'm excluded because I've done standard treatments. Some like the awesome virus treatment in Utah I'm excluded because I have bone metastasis.

So I'm very frustrated about not seeing good options and very worried especially since the nurse called me about this ERK thing today. Same trial they said at my last scan in november. I'm still hoping though the scan Monday shows no new stuff and everything shrinking or staying the same. That would be a first for me and I would stay on keytruda and thank God for such a miracle.

Sorry to bother everyone. I guess the scanxiety is really getting to me especially after that call from the nurse today about ERK.

Artie

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