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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_Paul_'s picture
Replies 1
Last reply 3/15/2013 - 8:50pm
Replies by: hbecker

Just met with my melanoma oncologist at Johns Hopkins following my last clinical trial GVAX treatment. He wants me to get a spot in my original excision site biopsies as he noticed some discoloration. My
primary was a 1.3 mm deep modular on the back of my head.

Is local recurrence common?

Thanks - Paul

To exist is beyond fantastic.

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Tim--MRF's picture
Replies 10
Last reply 3/15/2013 - 10:59pm
Replies by: kylez, Cielo, Charlie S, Anonymous

We have all been frustrated with Chat not working and with some issues related to posting.  Here is an update.

I just had a call with Janner and our IT folks (thanks Janner!) and I think we have a  better understanding of the chat and posting issues.

Apparently Chat requires "flash" and some recent updates to flash are incompatable with the current Chat software we use.  Our IT folks are working with the vendor on an update that is compatible, but are not sure how long that will take.

In the meantime, we have asked them to find an "off the shelf" chat software program that will allow us to have some kind of chat capability.  This will likely be a stripped down version with less functionality, and may be prone to spam.  Our feeling, though, is that it is better to have an inelegant solution now rather than a perfect solution at some future time.  This will hopefully be up and running in the next couple of days, and will only be in place until we get the main chat room software working again.

Also, we have all seen long delays between when we hig "post topic" and when the post actually occurs.  This results in some people accidentally posting multiple times.  Apparently this is because of some issues with the service that blocks spam.  Again, they are working on a solution but it may take a while.  In the interim, they will put a message on the board saying that posts take a few seconds to process and asking people to only hit the "post topic" button once.

Again, I apologize for the issues we have had and appreciate your input and patience.

Tim--MRF

 

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ncdaniel's picture
Replies 1
Last reply 3/15/2013 - 9:47am
Replies by: d1i2x3i4e5

My wife had her first Dose of Yervoy on 2/6/13 now has had major problems colitis  now on 80mg Prednisone reducing to 60 for 3 weeks then further reduction. Has anyone had bad first/second dose reaction and then able to continue with Yervoy? What happened on restart any better? Hoping to continue but wondering what  others experience was.

Daniel

Trust in God - Live one day at a time

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Anonymous's picture
Replies 3
Last reply 3/15/2013 - 12:05pm
Replies by: lou2, Anonymous

Sorry, don't know why article titles are such small type.  There doesn't seem to be anyway to make them larger.

Table of contents here, in case links in articles below don't work:  http://www.nature.com/jid/journal/v133/n4/index.html

-------------------------------------------------------------------------------------------------------------------------------------------------------------------
 

NRAS and BRAF Mutations in Cutaneous Melanoma and the Association with MC1R Genotype: Findings from Spanish and Austrian Populations

Elke Hacker, Eduardo Nagore, Lorenzo Cerroni, Susan L Woods, Nicholas K Hayward, Brett Chapman, Grant W Montgomery, H Peter Soyer and David C Whiteman

J Invest Dermatol 133: 1027-1033; advance online publication, October 25, 2012; doi:10.1038/jid.2012.385

Abstract | Full Text | PDF | Supplementary information

See also: Commentary by Fink et al.

 

 

Chemovirotherapy of Malignant Melanoma with a Targeted and Armed Oncolytic Measles Virus

Johanna K Kaufmann, Sascha Bossow, Christian Grossardt, Stefanie Sawall, Jörg Kupsch, Philippe Erbs, Jessica C Hassel, Christof von Kalle, Alexander H Enk, Dirk M Nettelbeck and Guy Ungerechts

J Invest Dermatol 133: 1034-1042; advance online publication, December 6, 2012; doi:10.1038/jid.2012.459

Abstract | Full Text | PDF | Supplementary information

 

 

Familial Melanoma–Associated Mutations in p16 Uncouple its Tumor-Suppressor Functions FREE

Noah C Jenkins, Jae Jung, Tong Liu, Megan Wilde, Sheri L Holmen and Douglas Grossman

J Invest Dermatol 133: 1043-1051; advance online publication, November 29, 2012; doi:10.1038/jid.2012.401

Abstract | Full Text | PDF | Supplementary information

 

 

The TWEAK Receptor Fn14 Is a Therapeutic Target in Melanoma: Immunotoxins Targeting Fn14 Receptor for Malignant Melanoma Treatment

Hong Zhou, Suhendan Ekmekcioglu, John W Marks, Khalid A Mohamedali, Kaushal Asrani, Keeley K Phillips, Sharron A N Brown, Emily Cheng, Michele B Weiss, Walter N Hittelman, Nhan L Tran, Hideo Yagita, Jeffrey A Winkles and Michael G Rosenblum

J Invest Dermatol 133: 1052-1062; advance online publication, November 29, 2012; doi:10.1038/jid.2012.402

Abstract | Full Text | PDF | Supplementary information

 

 

Liver X Receptor Activation Inhibits Melanogenesis through the Acceleration of ERK-Mediated MITF Degradation

Chang Seok Lee, Miyoung Park, Jiwon Han, Ji-hae Lee, Il-Hong Bae, Hyunjung Choi, Eui Dong Son, Young-Ho Park and Kyung-Min Lim

J Invest Dermatol 133: 1063-1071; advance online publication, December 6, 2012; doi:10.1038/jid.2012.409

Abstract | Full Text | PDF

 

 

cAMP-Binding Site of PKA as a Molecular Target of Bisabolangelone against Melanocyte-Specific Hyperpigmented Disorder

Eunmiri Roh, Cheong-Yong Yun, Ji Young Yun, Dongsun Park, Nam Doo Kim, Bang Yeon Hwang, Sang-Hun Jung, Sun Ki Park, Yun-Bae Kim, Sang-Bae Han and Youngsoo Kim

J Invest Dermatol 133: 1072-1079; advance online publication, December 20, 2012; doi:10.1038/jid.2012.425

Abstract | Full Text | PDF | Supplementary information

 

 

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Ali's picture
Replies 14
Last reply 3/18/2013 - 5:14pm

Hi guys, just wanted to share my good news from last week.  Brain MRI remains CLEAR (25 small tumors in there in June, all disapeared by September after one dose of IPI and monthly Temodar).  Two adrenal tumors that we radiated in January are dying off.  One tumor in armpit still growing slowly.  That's it folks!!  We are deciding now what to do with the axillary tumor, most likely radiation as my tumors seem to respond well to that, and there may be some benefit to the immune system treating it that way. 

I am full of gratitude.  I often wonder at how amazing it would be to live like this for many years (is 50 more too much to ask?).  I am seriously just so happy to be alive.  Every day.  

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POW's picture
Replies 8
Last reply 3/16/2013 - 11:42pm

In trying to help Janet Lee and her husband, Don, get insurance coverage for Zelboraf, I looked into what's going on with the FDA and their approval process. It turns out that the manufacturer of Zelboraf, Genentech, only applied to the FDA to use Z in people with the V600E mutation, so that is what the FDA approved. Therefore, Zelboraf is not FDA approved to treat people with other V600 mutations like V600K, or V600D, or V600R. That is why Don's insurance company would not approve payment-- that would be considered an "off label" or "not medically necessary" expense.

That makes me wonder how many people are being denied insurance coverage because they have the "wrong" V600 mutation. How common is this problem, and what did you do to overcome it? If you have a non-V600E BRAF mutation, is your insurance company paying for Zelboraf? Did you have to fight for coverage? How?

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bikerwife's picture
Replies 14
Last reply 3/18/2013 - 8:06am

Lynn was put to sleep at 8 this morning for gamma knife. It lasted till 6 this afternoon. When they tried to wake him his heart messed up and his breathing couldnt get  off ventilator. Started sending out pray request he came out of it and is breathing on his own. We have to stay over night though. please pray for us

What God leads u to he will. Lead you through

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Replies by: Fighting Mama, Tim--MRF

Hi,

Haven't posted in awhile. I have been on Zelboraf since January 2012 with a good response (with usual SE gi upset, gas, hair loss, extreme photosensitivity). My last CT was very encouraging and continued to show marked regression. I have been pretty stable from the head down. My brain on the other hand has had a mixed response to Gamma Knife. In 2012 I had three sessions of GK and my last brain PET/CT, done last week, showed marked progression. Since the scan I have had some seizure acitivity. I now have plans to initiate whole brain radiation this Friday. It seems so surreal to hit the end of the road, so to speak. Would like to hear from those who have gone through whole brain under similiar circumstances or if there are any new trials taking folks with brain mets?

Fighting Mama~ Amy

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SteveT's picture
Replies 8
Last reply 3/14/2013 - 11:38am

Hello,

On Monday I had a WLE on top of my head and a modified radical neck dissection. During surgery my thoracic duct was nicked and now the lymph fluid won't stop flowing. The docs want to use a PICC line to help dry up the duct so it will heal. They want to keep me here (UNC Chapel Hill) for a few more days to perhaps a week. I'm having trouble summoning the extra strength to take on this procedure.

Is this a big deal? Are there other options to halting the flow? It's only been 48 hours and this drain tube is real old. I'm ready to begin healing and rehab but I can't seem to get out of the hospital.

 

Steve

Make today count

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Tim--MRF's picture
Replies 6
Last reply 3/14/2013 - 3:20pm

I sat through some presentations yesterday on melanoma, and one in particular that discussed resistance to BRAF therapy.  As you know, after 6 months on a BRAF inhibitor about half of patients will see their tumors start to grow again.  A lot of people have tried to understand why this happens, and the MRF funded a researcher who has done good work on this area.

I have also heard that some doctors have started cycling BRAF inhibitors on and off. In other words, give the drug for a while then stop for a while before starting again.

Finally, I heard that a lot of colorectal cancers also have BRAF V600e mutations,  but BRAF inhibitors haven't worked in those cancers 

A researcher yesterday said that colorectal cancers readily activate a compount called EGFR, a receptor on the cell surface that signals pathways that lead to cell growth.  One of those pathways, the MAPK/ERK pathway, includes BRAF.  Another is called the AKT pathway.  

Inhibiting BRAF shuts down the MAPK/EFK pathway.  In colorectal cancer this causes upstream activation of EGFR, which in turn activates the AKT pathway.  Imagine having a favorite road you drive to go to work.  if there is a wreck on that road you find a different path.  You may not like it as well, but it gets you there.  The same is true here.  The cancer prefers growing by an activated MAPK/ERK pathway, but is perfectly happy using the AKT if it needs to do so.

It turns out that melanoma cells really don't like to activiate EGFR.  Unlike colorectal cancer cells, which activate it easily and flourish under that system, melanoma has a hard time with this.  (Imagine that your alternate path to work is a dirt road through the mountains instead of the 4 lane highway you normally use.)  With enough BRAF inhibition the activation can and does occur, but the cells that grow with this mechanism are weak and don't do well.  Removing the BRAF inhibition allows the stronger cells to come back and wipe out the EGFR activated cells.  Then re-inducing BRAF inhibition wipes out the other cells.  

Bottom line is that cycling BRAF inhibitors on and off may provide longer lasting benefit.  Hopefully this will be studied further and, if it is validated, become a new approach to treating BRAF mutant melanomas.

Tim--MRF

 

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joy_'s picture
Replies 8
Last reply 9/27/2013 - 5:44am
Replies by: mdewees, Rocco, kylez, joy_, Gene_S

Hi all.  My husband is starting a trial that will begin with 6 weeks of vem. followed by ipi every 3 weeks.  I noticed that the dosage of the ipi will be 10mg/kg and that the FDA approved dose is 3mg/kg.  I understand what the side effects are at the "standard" dosage but am wondering what we should expect at the 10mg/kg.  Should we expect the same side effect just more intense?  Should he prepare to be out of work during this time?  Is there anyone else here who has been on a trial at this dosage?

Thanks in advance for any advice.

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bikerwife's picture
Replies 4
Last reply 3/13/2013 - 10:50pm

Lynn is having his 5th gamma knife this morning they put him to sleep for the procedure this time. He had his first treatment with abaraxene last Monday. Just tired no other problems so far. 3 weeks on one week off en repeat then scans. Blessing and prayers for everybody out  mpip land.

Belva

What God leads u to he will. Lead you through

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bikerwife's picture
Replies 1
Last reply 3/13/2013 - 7:24am
Replies by: POW

Lynn is having his 5th gamma knife this morning they put him to sleep for the procedure this time. He had his first treatment with abaraxene last Monday. Just tired no other problems so far. 3 weeks on one week off en repeat then scans. Blessing and prayers for everybody out  mpip land.

Belva

What God leads u to he will. Lead you through

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Hi everyone,
Well after a hectic ten days or so of making, then rearranging, then again rearranging appointments and treatment schedules I have started on the Novartis BRAF and MEK inhibitor combination trial, as well as starting radiation for the tumour behind my left eye.

Things were really getting rough for me over the weekend just gone, I was suffering dreadful pain around the eye, our family GP prescribed me some Endone but I think that didn't agree with me and I became nauseous and couldn't keep anything much down, finally when I got to the radiation planning study on Monday the doc prescribed me steroids and brought the treatments forward, the steroids had an immediate effect and I am feeling way way better although there is a long way to go with dealing with the orbit tumour.

The first two trial days have been ok, day 1 involved a whole day at hospital being blood tested prior to dosing then taking the tablets (I have to take 3 MEK 45mg and 5 BRAF 450mg in the morning, and another 3 MEK at night), then continuos blood testing throughout the day, I think 6 samples all up, to check uptake of the drug. I basically rested in a quiet hospital room all day, listening to some music and trying to recover a bit from the rough weekend.

So I've now had a grand total of three doses of the meds, nothing to note as yet, there are some potentially nasty side affects on the eyes so they monitor that situation closely with regular ophthalmic check ups. I am just counting down the days until I can get to see my husband and little boy again, they are travelling to be with me just before Easter and over the holiday.

Would love to hear how anyone else on this trial is getting on,
Cheers
Ally

A bad day's fishing beats a good day's work everytime

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nancy mary's picture
Replies 4
Last reply 3/14/2013 - 9:08pm
Replies by: nancy mary, Anonymous, Tim--MRF

Hi.
I have a question about my path report.
from what i,ve read mine does not include mention of most of the item talked about or read about
Online. It is from Columbia dermatpathology NYC.
It reads: " I interpret this as in situ melanoma, possibly arising in a dysplastic nevis.
The lesion extends to one peripheral margin in the plane of bisection."
This was ashave biopsy.
Micro: the specimen is bisected and shows confluent junctional melanocytic nests as well as many
Single melanocytes extending upward within the epidermis.

Is this sufficient? I,m puzzled that thi eas all that was written.
Appreciate your opinions. Thanks.

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