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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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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POW's picture
Replies 3
Last reply 3/14/2013 - 11:14am
Replies by: Tina D, Janner, Cielo

PBS Newshour broadcast an important segment last night titled: "What happens to your online accounts when you die?" According to this report, there are few laws-- and no consistent laws-- about how executors can get information about or gain access to online accounts. This hit me particularly hard because I handle all of our finances and they are all done online-- not only checking and savings but also investment accounts, retirement accounts, everything. My husband knows I do this, but he has no idea how to do it himself and he is completely uninterested in learning. For most of these accounts, they do not even send out paper statements anymore so how will my heirs even know they exist? The financial institutions do send me a notice that my monthly (online) statement is now available, but the notice goes to my (password protected) email!

My brother's first symptom of melanoma was a stroke. He was taken to the ER where they determined that he had had a stroke, then found that the stroke was caused by a bleeding melanoma tumor in his brain. Unfortunately, the stroke itself damaged his memory and he could no longer remember the passwords to his accounts or the combination to his storage locker or anything. Fortunately, he was still alive and mentally competent so I was able to work with him to re-set everything. But the whole process took several months.

So just a word to the wise that if you have online financial accounts or Facebook or email or Picasa or whatever, be sure to write down the account information and put it in a safe place. If you don't want to share it with anyone right now, at least put it in a safe deposit box that your executor will be able to access. And if you are an executor, be sure to check the free websites for "unclaimed money" as described by consumer advocate Clark Howard ( http://www.clarkhoward.com/news/clark-howard/personal-finance-credit/finding-and-claiming-missing-money-easy/nCySp/ )

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Some may know my history, it is up to date on my profile.  Surgery in October. Surgery in November. Interferon in December (two days after hubs mom died) to half of January then stopped per oncologist.   No current treatment now which freaked me out.  So I had two biopsies taken cuz I had some free time and they are dysplstic Nevis. Great news.  These are how my primary started so two more WLE procedures, thankfully just in the procedure room.  That's on the 5th of April.  And finally I get my scans on April 9th to see if the lung thing grew bigger than 4mm.  This is my scared to death point.  I would go to stage 4.

You can cut things out of me, pull out nodes but playing around with the internal stuff is paralyzing me with fear.  It came on when we got home from a month in Florida.  Life seemed so normal and happy and great excersing and shopping (I've gone from a size 16 to a 6 in a year, partly due to eating gluten free and then not being able to eat while on Interferon.  when I was shopping I was thinking. I wonder if this would fit my daughter when I'm gone.

I have continued to crazily clean and organize the house.  A few more degrees warmer and I can wash the outside windows.

I am continuing to teach my 17 year son life skills.  Cleaning, laundry. Kitchen, shampooing carpets. Chasing spider web's,, etc.  We have also started an herb garden, quite large. He should be a great gardener before I die.  Hubs and I do all paperwork together so he will be fine. I also keep a copy of all passwords and account numbers in a book in a lockbox with important papers.

So, yes, since we returned to the dull cloudiness of Ohio, I have lost my great attitude I have carried all along.  I just don't know where it went.  My depression is up, my anxiety is way up, and this weather makes my joints ache.  

When do you get to the point where you don't have some kind of procedure or treatment going.  Where you can catch your breath and not planning more treatment for the next stage.  People say just push it to the back of your mind and keep living.  But when things are happening monthly I cant seem to do that.  I am a naturally positive person with empathy for everyone one this board and most people in general. I am very spiritual,  take care of my chakras, meditate, use essential oils.  And match colors according to my aura.

I know I lost a few of you there but these are strategies for me to keep going and healing.

I'm tired from the last 6 months, hurrying to get stuff done at home and scared about next month.

Any advise, kind words, kick in the pants, PMA, lullabies welcomed.  Nasty remarks will be burned in the fireplace.

Thanks, Colleen 

Live!

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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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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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steelergirl's picture
Replies 3
Last reply 3/13/2013 - 5:01pm

I am having a broncoscopy with a needle biopsy tomorrow to see  and probably also lymph nodes removed from around my windpipe to see if my cancer is back, or to defintely be diagosed with sarcoid.

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nancy mary's picture
Replies 6
Last reply 3/13/2013 - 4:24pm
Replies by: nancy mary, Janner

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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Colleen66's picture
Replies 20
Last reply 3/13/2013 - 10:08am

 

My head is spinning, anxiety is over the top, depression kicking in.  Spring cleaning all days to give my mind a rest.  Could really use the chat room.

Colleen

Live!

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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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swissfarm7's picture
Replies 5
Last reply 3/13/2013 - 2:14am
Replies by: swissfarm7, buckytom, Janner

Hi, all!  Hans is 4+  months through his year-long interferon treatment.   This comes after his Stage 3B diagnosis last July and subsequent lymph node dissection.   Compared to many people, his side effects have been manageable.  He's lost 25 pounds (and was trim & fit to begin with, so he didn't have weight to lose) and is generally more fatigued, but he's continued working on our farm and takes on occasional ski day. 

His white blood cell and neutrophil counts have been critically low for quite some time, so his dosage was halved.  The counts have continued sinking, though, and he now needs to consider stopping the treatment temporarily (or permanently) or taking another drug to treat the neutropenia.  His local oncologist recommended neupogen twice weekly.  I've heard of people with other forms of cancer receiving chemo and taking neopogen.  I read that leukine might be more appropriate for melanoma patients. 

Anyone have experience with this and care to share your thoughts?  As in the past, I'm not asking for opinions on interferon treatment, though I have no doubt someone will feel the need to comment to that end. ;-)  I'm specifically looking for info on neutropenia and the drugs mentioned above.  Thank you!

Best,

Colleen

Keep on keeping on.

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ncdaniel's picture
Replies 6
Last reply 3/13/2013 - 12:34am

Since my the Melanoma in my wife has spread from her head ( Removed 2011 11.5 mm deep ) to her lungs in July 2012 meta sized to lung multiple spots with tumors a needle biopsy was done in 2012 of her lung tumor.The sample showed Melanoma (no surprise) but the sample was not big enough for Braf testing, The assumption was made that since her original tumor on her head was tested not to be  BRAF receptive so would her lung tumors. My question is should new samples be taken and tested? I have just read on this site about NRAS testing should this be done?  I am not sure I even understand NRAS but any thought would be appreciated. I know most of you are not medical people but living this makes you one pretty quick. Any advice would Help. My wife has had IL2 - not a responder, and had one dose of IPI /Yervoy and is now on high dose steroids 80mg now 60mg due to issue not sure when or if Yervoy will resume anybody with any experience with this?

Daniel

Trust in God - Live one day at a time

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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.

Login or register to post replies.

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