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.

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Kdw2012's picture
Replies 5
Last reply 8/1/2014 - 1:20pm

I need some knowledgable information on which of these treatments I should choose to do? I was told that the Yervoy has a curative rate of approx 20% while Zelboraf is not.

We are waiting to see what the insurance will cover but my doctor told me to do some research and make a decision on which I prefer.

i am BRAF positive

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RJoeyB's picture
Replies 5
Last reply 8/1/2014 - 11:52am
It's been about six weeks since I posted about this and wanted to give an update following my most recent set of scans.  Rather than recap what's been happening, here's a link to my post from June (apologies in advance, it's entirely too long, as is this post, but no one ever accused me of not being thorough ;-)
 
 
So I've been on Decadron for the past six weeks to try to reduce the swelling and perhaps resolve the motor control symptoms I've had in my left leg, e.g. limp and awkward gait, knee weakness, reduced ankle motion, can't curl toes, etc.  I've continued to take my daily walks, 2-3 miles in the evening and some longer ones on the weekend, but really didn't see any improvement in motor control.  Some days a little better, some a little worse, but overall about the same.  I've also noticed in the past couple of weeks new weakness and range of motion in my left arm — the top half of my left humerus is a 10" titanium rod from back in 2010 to remove one of my original mets, so it's limited to begin with, but this limitation is new and definitely related to the motor control issue.  My expectation going into the scans these past two weeks was that things would be stable at best, with no indication if this was new tumor growth or radiation necrosis.
 
My regular three-month PET-CT was last week and in addition to the continued vigilance for the dreaded "new met", there were a couple specific things we were on the lookout for:  continued response of the lung met that was treated with SBRT in February and an area of possible concern in my distal ileum (near where the small intestine and large intestine connect) that lit up on my April PET.  We know that the PET will rarely be able to show anything in the brain because it naturally lights up "hot" throughout, so weren't expecting any answers, only looking to keep things uncomplicated as we try to focus on whatever is happening brain-wise.  Good news with the PET.  The lung met didn't even get honorable mention in the report for either size or activity.  The intestinal area is lighting up still but doesn't appear to be associated with any mass; given that it was also scoped (lower double-balloon enteroscope, longer than a colonoscopy into the small bowel) in May with no clinical finding, there is string belief that it's transient GI inflammation likely associated with the partial small bowel resection where the tumor used for my TIL cell harvest was removed about three years ago.  We've seen it before but have to continue to watch it.  And no new areas of concern elsewhere on the PET.
 
Monday was the repeat brain MRI.  Given how things have progressed, or not, I was expecting that things were going to look about the same and we were going to be in the same position as we were six weeks ago, without any real answers and looking at another period or observation — and more cursed Decadron.  The news was a little better, considering that I haven't had any improvement in the physical symptoms.  The "enhancement" or new activity all around the edge of the original tumor bed has substantially reduced, and the area of cerebral edema (swelling) extending outward from there is perhaps half to two-thirds of the size it was on the last scan.  This isn't activity that would be expected of new tumor growth on its own — remember, I'm not currently actively receiving any PD-1, ipi, or BRAF/MEK therapies — so this is likely radiation necrosis. Still potentially serious, as necrosis can continue to advance and be as problematic as a tumor.  But it can respond to steroids or even on its own over time.
 
The fact remains that I'm still experiencing motor control problems, but they believe that the necrosis should continue to resolve and as it does, the symptoms will also improve.  Even if the swelling is only half of what it was before, it's still squarely centered in the "motor control strip", so may not improve until it fully dissipates.  The plan is to try tapering off the Decadron over four weeks, to see if the necrosis will continue to improve on its own.  We're going to add Trental and vitamin E, which can assist but aren't nearly as effective as the steroid — I don't know a lot about either with regards to necrosis so won't say much about them — then repeat the MRI in eight weeks.  Should I experience any worsening of physical symptoms, resuming the Decadron is an option, but they want to get me off them as soon as they can...  no argument from me, it's a miserable thing — I need a good night's sleep and look like Humpty Dumpty, among other things, and my family is probably ready to toss me on the street from the moodiness.  Truth is, I've managed O.K. compared to the severity of Decadron stories I've heard from others.
 
So, it looks like radiation necrosis that is improving.  There is a possibility that this could be cyclical, with "flare-ups" of activity, which means continued vigilance for necrosis or new tumor growth if things change and periodic or longer-term use of steroids.  But my radiation oncologist also said that even if that happens, there is usually a "hump", often around two years, where even cyclical RN starts to settle down.  
 
Altogether, though, the news is as good as we could have hoped compared to where we were six weeks ago and allows our family to collectively exhale a bit — time to focus a little more on daughter #2's college search and break some of these crazy Decadron food cravings — back to the Stage IV limbo.  Hopefully the physical symptoms start to improve soon.  Just wanted to share — we learned a little more the past six weeks, if only I could apply the time spent to learning to play piano or something...
 
Best to all,
Joe
 

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Shelby - MRF's picture
Replies 2
Last reply 7/31/2014 - 10:10pm
Replies by: jahendry12

Dear MPIP Community,

We are looking for volunteers in the Chicago and Dallas areas. Our partners at the American Academy of Dermatology (AAD) need volunteers to help with skin screenings at a few NFL games in those cities. Volunteers are needed for the Chicago Bears Family Fest on Saturday, August 2nd, the Dallas Cowboys home opener on Sunday, September 7th and the Dallas Cowboys Rally Day on Monday, September 8th. If you’re interested in volunteering, please email AAD’s Tina Shepherd at tshepherd@aad.org

Have a great weekend,

Shelby - MRF

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dodgedh2's picture
Replies 20
Last reply 7/31/2014 - 10:07pm

I was originally diagnosed at Stage 4 (met to bone) w/unknown primary. Following resection and gamma radiation treatment at surgery, I have been NED for just over 6 years now. My Onc released me from oncology and turned me over to PC for monitoring. No scans (unless I have symptoms or some other reason to suspect return). I'd like to hear from other long-term, late stage NED survivors. Has anyone experienced long-term NED then had recurrence? How long were you NED? Just going through one of those periodic anxiety moments about having survived Stage 4 and looking over my shoulder again.

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Anonymous's picture
Anonymous
Replies 33
Last reply 7/31/2014 - 4:50pm

Has anyone else been told they WILL have a recurrence? I have and I'm totally confused when I was told my nodes are clear. Help me understand!!

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Brigitte's picture
Replies 4
Last reply 7/31/2014 - 4:25pm
Replies by: Brigitte, Janner, Kim K

I was wondering if someone could help me understand my biopsy report. 

On top is says clinical diagnosis  Lentigo VS. MM  (does that mean what my docter dignosed and sent to the patholoogy, or what the pathologist diannosed? 

 

under that is says: Diagnosis: Compound Nevus with dysplastic Features.

Sections show a compound nevomelanocytic prolifeeration exhibiting dysplastic features, primarily in the form of lentiginous architectural disorder and asymmetry, accompanied by random, relatively mild, cytologic atypia. Junctional changes are focally advanced, perhaps indicative of progression, such that a conservative complete excision is recommended. 

Im a little freaked by the words focally advanced, perhaps indicative of progression. Does that mean that maybe I do have cancer but they cannot tell until they get the excersion biobsy?    Please help me understand what all this means. 

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KimP's picture
Replies 6
Last reply 7/31/2014 - 3:43pm
Replies by: Janner, CHD, KimP, washoegal

Hi. Used to come here. First husband had melanoma and passed away 6 years ago. I just had mole biopsies with the subject line. Derm says it is cancer. I say it is not. What do you all say?  I was Horski or Kimmyie back then if any of you were here then.

KimP

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/31/2014 - 1:48pm

Hello,

 

I'm not oncologist, just a GP and I wish I can help one of my patient and friend here in Europe to access this treatment (or the other anti-PD-1 antibody) ...

Is there a way to get it under "compationate use" she will pay for it , is she can afford...

Looking for any assistance in this way,

 

thank you for this usefull board

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Tracy Chicago's picture
Replies 2
Last reply 7/31/2014 - 11:43am
Replies by: Tracy Chicago, Janner

Hi! I had my second melanoma removed (level 1) and it's pretty small. Who should I have do my wide excision?  My choices are a plastic surgeon who specializes in melanoma or a surgical oncoglogist.  Would a surgical oncologist be over kill for a melanoma that was less than 1mm?

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jualonso's picture
Replies 1
Last reply 7/30/2014 - 5:17pm
Replies by: Anonymous

In the 16 and 17 page of thie document there is a interesting study, because oc my english i dont understand as well as i would like, could someone do a easier conclusions?

www.seom.org/seomcms/images/stories/recursos/Boletin_91_pub.pdf

 

 

Thanks

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Nell's picture
Replies 2
Last reply 7/30/2014 - 5:15pm
Replies by: Anonymous, Mat

Has anybody had loose green stools during treatment with yervoy?

One voice can make a song; one life can change the world.

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Sherri's picture
Replies 1
Last reply 7/30/2014 - 1:10pm
Replies by: Janner

Hi this is my first time posting.  I'm especially interested in Janners response:). I've read a lot of your replies.  I had a .3 mm depth stage 1A in November.  In June of this year I was told I had an in situ on my back but I go to U Of M for surgeries and my derm sends the oaths to them....they changed that ex to moderately atypical hyperplasia.  We still did the surgery as if it were in situ.  I know I shouldn't worry about recurrence?  But what are my chances of a second primary with dysplastic nevus syndrome?  I've had so many answers from we don't put a number on it to 20% from a good derm who said whether a person has one dysplastic mole or 50 their chances are 20% for a second primary.  I have two boys so young and this consumes me where I'm going to counseling.  I know someone who sees an oncologist and a derm for a stage 1 and yhe oncologist just does a second body scan and checks nodes and blood.... Thoughts?  This is so new to me that I need info!  I sure am afraid of this:(. 

 

Sher

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/30/2014 - 12:03pm
Replies by: Anonymous, arthurjedi007

Hello -

Im currently a care taker (along with a few others). My "patient" was diagnosed stage IV in January of this year. Primary was a mole on his side, but the initial diagnosis came from the removal of a tumor on his side. Pet scan showed melanoma had spread to liver, spleen, pelvis, abdomen, spine, right arm & lungs. Before the test results came back for the BRAF mutation he did one round of Ipi. Before his second round they switched treatment and put him on the the MEK combo. In the end of April his LDH started coming down and tumors show stabilization and some decrease. Things stayed like this till end of June. His LDH started rising again and although the origin tumors still remained same and some decreasing two new  tumors came up in his soft tissue. He started back on the Ipi three weeks later. He's now had two rounds and of Ipi and radiation on his arm and pelvis to help levitate some pain he's in. Recently he's started having spasms and twitching. I don't know whether to attribute it to the disease that may have moved to the brain or all the medication he's taking? The other think I wonder is if the Mek combo caused the stabilization or if it was the initial round of Ipi that kicked in. My fear is that he won't make it long enough to see if the Ipi works.

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curious12's picture
Replies 2
Last reply 7/30/2014 - 11:03am
Replies by: curious12, Anonymous

Hi! I've had melanoma in-situ and my sibling has. We have tons of moles and I've probably had 50+ removed. I'm pretty knowledgeable on all things melanoma. My 8 year old son has a a new small, red/flesh colored bump on his forehead. It's very harmless looking (doesn't itch or hurt) but it isn't going away. It has only been maybe 12-14 days. I know melanoma in kids can present this way. I WILL get it biopsied if it doesn't go away of course, but what timeframe do you think is reasonable to wait? I was thinking 2 more weeks and then get it cut out, but is that crazy? I don't want to let my anxiety take over and cut into his face too soon! Don'T care about scars, but realize there are a million benign things that are more likely. Saw a derm today-- she wasn't sure. Said looks harmless- - maybe cyst or insect bite. There is no head to it. She said to come back in 4-6 weeks if still there.. but I don't even want to wait that long!!   He also has a very dark brand new dark spot on sole of foot that two derms say looks fine, but I don't like it (it's 1mm) It's almost black and on the sole of foot.. considering biopsy as well.. Would love to know if I'm being reasonable or overboard. thanks!

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Tracy Chicago's picture
Replies 4
Last reply 7/30/2014 - 10:47am
Replies by: Tracy Chicago, CHD, 5dives

Has anyone sucessfully insisted on lymphatic mapping for a Level 1 melanoma? I ask because my first primary was level 1 and then three years it spread to my lymph nodes, making me stage 3.  I now have a second level 1 melanoma in a different place. I'd like to request lymphatic mapping considering my history.

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