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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cld's picture
Replies 9
Last reply 3/17/2013 - 9:18pm
Replies by: Tina D, cld, jcmp, aldakota22

I had surgery in December and it's returned already!  Sigh!  I need Al to tell me to beat the beast!

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I ran across this program OnDemand on XFinity.  It talks about understanding your genetic code but has a segment about a fellow with stage IV melanoma taking Zelboraf.  I found it online at this location, too.  NIH is the sponsor.

http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html

http://www.MelanomaResources.info

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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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doro's picture
Replies 7
Last reply 3/16/2013 - 11:02pm

Hi all,

 My dad (in his 60s, Stage 3c) came down with diverticulitis after a week on interferon; fortunately, antibiotics seem to be working to reduce the inflammation. The oncologist said he can't be sure that interferon is not the culprit so he doesn't want Dad continuing with it.  This leaves us wondering about possible treatment options and, as a secondary question, how this recent illness may affect his ability to get into clinical trials. It seems like side effects for most treatments involve potential bowel/intestinal issues (e.g., ipi and colitis). We are supposed to talk with the oncologist again in a couple weeks when the inflammation has further subsided.

Does anyone have any experience with diverticulitis or thoughts/suggestions on how to procede or ideas to bring up with the oncologist? We know at his current stage there aren't a lot of approved treatment options. There don't seem to be a lot of clinical trials out here - there are a couple for ipi (vs interferon) and braf/mek (with a placebo) but we aren't sure those seem appropriate.

Thanks!

Doro

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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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_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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dellriol's picture
Replies 8
Last reply 3/15/2013 - 2:21pm

Just over a year ago I lost the use of the entire right side of my body when a brain met I didn't know I had started bleeding.  After craniotomy, scans showed more tumors: one more brain and 5 or six lung tumors.  I spent a month in rehab learning to walk again, then started on zelboraf for the tumors. I started taking an arthritis class at the YMCA in case the medicine started causing joint pain.  I've been hospitalized twice more, for liver problems from meds, and for a transient ocular ischemia. We are now a year later,and my tumors have shrunk but are still there.  I've stayed out of the hospital for 6 months.  My YMCA class morphed into lap swimming. So for my 1 year anniversary, I swam a full mile.  It was amazing to me to think that in one year I've accomplished that much, from being right side paralyzed to a one mile swim.  LET ME TELL YOU, GOD IS GREAT!

This ain't no hill for a stepper.

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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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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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markdz's picture
Replies 11
Last reply 3/15/2013 - 2:58am

Last friday i found out that i have nodular mel.. Doing what most normal people do, i went to the internet. I am at my wits end. I am 41 military in good shape. This is not supposed to happen to me. I had a growth on my earlobe that i didnt bother with until i found a mole that i didnt like. The mole was benign but the growth turned out to be NM. Tomorrow i go to Brooks Army Hospitol to do tests. The information i have about my growth is what my derm.gave me. They shaved 2.7mm off but didnt get the root for right now and this growth was on my ear for about 4 months. scared to death. I have no one to talk to about this. My wife is at her nevres ends also. I know that this is fast moving and dont want to die...

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ruby's picture
Replies 1
Last reply 3/15/2013 - 1:10am
Replies by: democat

Hi all

I would welcome anyones advice here please

I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

 

I have now bee told to take interferon for 4 weeks high dose and then 12 months delf administered... I have a 8 month old baby to look after a 13 year old daughter and am scared I will not cope whilst on the course I also live in ireland away from all my family I am put off my the bad side effects but also dont want to regret not taking this chance to see off the monster your thoughts advice anythink welcomed as this is the hardest of decisions..

 

thank you

 

rachel

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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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Janet Lee's picture
Replies 8
Last reply 3/14/2013 - 5:01pm

Briefly, my husband was diagnosed Stage IV on January 18, 2013. He has had 11 rounds of radiation to his pelvic area for two large masses and a tumor at L1 causing significant pain (1 to go!). He also had cyberknife this past Friday morning for a tumor in his parietal lobe. The plan was to start Zelboraf this coming Wednesday, Feb 13, at Dana Farber. I believe the Zelboraf appears to be a sound, valid first choice of treatment, since Don did test positive for the BRAF mutation.

Insurance company says he was 600R instead of 600E and is therefore ineligible. Has anyone else had this experience? We have appealed the decision, and the DFCI doctor has sent supporting documentation that the 600R is clinically identical to the 600E.

Don't these insurance companies know they are dealing with peoples' lives here?

Help?

Janet

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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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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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