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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dentholla's picture
Replies 18
Last reply 4/23/2015 - 9:07am

I posted a few weeks ago about my husband being newly diagnosed with melanoma.  He had a shave biopsy that I was not excited about (method) and pathology results that were all pointing to >than what was estimated.  As it stands we received the results back from the SNB and the node (in parotid)  was positive for microscopic melanoma cells.

His melanoma was on his temple, all removed and all told 1.5mm (over twice what the shave said it was) and UT Southwestern thinks the surgeon did appropriate excision of 1cm.  So for that we feel grateful and do not have to do another WLE.

I need some advice guys.  We feel lost, helpless, and while I have been on this forum for weeks now he has not.  We haven't really been able to talk about all of this until today.  We are getting a 2nd opinion next week at Baylor (Dr. Cowler is who our ENT referred us to) and I understand there are some on this forum that are participating in Stage III trials at Baylor.  I'm interested to hear if anyone has feedback on that.  Also, UT Southwestern recommended a PET scan before we proceed with the moderate neck dissection to see if it has spread.  Is this a normal course of action?

Thanks, sorry I'm all over the place.  I honestly don't know if I can catch my breath still.  I am trying to stay positive and let him know this isn't a death sentence and a lot is being done now to treat and prevent reoccurrence.

 

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Jeffreyd's picture
Replies 3
Last reply 4/22/2015 - 11:35pm
Replies by: Anonymous, Julie in SoCal, mary1233

Hi All - First time posting here. I have stage IV melanoma that's spread to the brain and liver. I've done TIL therapy at NCI and have been on Dabrafenib/Trametinib for about 7 months. I'm planning to start Yervoy soon but would really prefer to do an anti Pd-1 (Keytruda or Opdivo) first if I could. 

Does anyone have experience getting insurance to pay for Keytruda or Opdivo before Yervoy? I understand it may be easier now with the NCCN guidelines and with the new studies coming out this week in the NEJM. Any suggestions?

Thanks!!!

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Speedster's picture
Replies 9
Last reply 4/22/2015 - 11:22pm

Today I was patient #1 at Baylor Samons for the Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III Clinical Trial.   Designed for Stage III patients - resected tumors, NED to determine if either is effective as an adjuvant therapy.

The trial will have 800 participants across the country.  Who else is in and what are you experiencing as you ramp up the treatment? 

Nothing noticeable for me after the first treatment today.  

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newmanmark's picture
Replies 5
Last reply 4/22/2015 - 11:55am

Hello,

I started Mekinist and Tafinlar today and I'm looking for some positive stories from people who are having success with this treatment.  I am 35 years old and stage 4.

Thanks

Mark

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/21/2015 - 6:22pm
Replies by: Ninniditti

Does mucosal melanoma respond to immunotherapy treatments differently from cutaneous?  My father has a ery high tumor burden and was just taken off one of the pd-1 trials after only 2 mts since his scan showed many new nodules and no improvement.   His oncologist is now recommending yervoy.  Have any of you had experience with a similar situation?  

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/21/2015 - 2:56pm
Replies by: Janner

Hello,

I unfortunately am not new here.  Although, I have been fortunate that I have never gone to this board to get information for myself, I now need it for a second family member. 

Here is what I know:

Diagnosed with superficial melanoma less than 1 millimeter thick.  I have not seen the path report yet to know whether or not there was ulceration or what the mitotic rate is.  The WLE was done last week and the path results are not yet in.  Met with oncologists today and they are opting to do a PET Scan.  Seems to me this would classified as Stage 1A or 1B and the SLND should be warranted.

Thoughts?

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Twistermom3's picture
Replies 2
Last reply 4/21/2015 - 1:50pm
Replies by: Anonymous, Julie in SoCal

I had my first check-up after a WLE in October on my back for an in situ melanoma and full body check. The dermatologist described the scar on my back as keloid. It is irritated. The MD suggested steroid injections and I declined. The thought of annoying the scar more made me shudder. The scar is slightly raised . Has anyone done this for a scar?

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Hi all,

We're working with a reporter who is writing a story about skin cancer in Latina women. If you or a loved one is Latina, has melanoma and would like to share you/their story with the media to raise awareness of this cancer, please contact media@melanoma.org. Thank you!

Lauren - MRF

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"Acute heart failure due to autoimmune myocarditis under pembrolizumab treatment for metastatic melanoma...... it is important to be aware of such rare, but severe immune-related adverse events."

http://7thspace.com/headlines/506871/acute_heart_failure_due_to_autoimmu...

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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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