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.

Expand/ Collapse Topic
 
Replies By
View Topic
Beth_A's picture
Replies 3
Last reply 7/25/2014 - 8:47pm
Replies by: Beth_A, hbecker

I just received a phone call this past Tuesday letting me know I had melanoma. I got a copy of the pathology report that was obtained from Mayo Clinic - apparently my local lab sent it to them due to coming back "atypical."  The patho report is pretty frightening, especially when paired with excessive web searching. I was going to wait for my family practice NP to refer me to a dermatologist, but instead I called the Melvin & Bren Simon Cancer Center in Indianapolis, IN  to try and get an appointment. They were super nice and helpful, after getting a copy of my patho report they set up an appointment for next Tuesday with a Dr. Swartzentruber. I looked him up and he has a great reputation, so I feel good about that. I'm really anxious though and hope my appointment will help resolve some of the incredible anxiety. Nice to land somewhere that has people familiar with this problem :)

Beth A.

Login or register to post replies.

arthurjedi007's picture
Replies 5
Last reply 7/25/2014 - 8:32pm

Just thought I would share some good news for those who have struggled through failed medicines and have landed in Merck's EAP PD1.

I confirmed with my Mayo doc the visible lump on my head that was bigger than my thumb is almost all gone with only 3 doses of this stuff. He was suprised to see a response so soon. He doesn't expect to see responses until after the 6th dose but everyone is different. The other 2 visible tumors are staying the same size according to his tape measure. Of course we have no idea about the internal ones but I am feeling better. My back spasm twinges are far less frequent. Blood work is ok with the ldh finally starting to go down a little from 423 to 399.

Someone said on here that no matter how many medicines fail you only have to stay strong and find that one that works for you. That has kept me going so much and I finally believe this is the one for me.

Unfortunately Mayo has an institutional policy that I have to have a scan before my 5th dose which is august 13th. My doc does not agree but his hands are tied. I really hope they keep me on this stuff because it works for me. He did say they evaluate immunotherapy results different than other results.

Good luck to everyone. Keep the faith no matter how dark things seem. There is hope.

 

Login or register to post replies.

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

Login or register to post replies.

Just wondering if anyone heard from melfighter? I know her husband is going through a lot and was supposed to see his UCLA doc last Monday. Am hoping everything turns out good.

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 7/25/2014 - 12:58pm
Replies by: Gene_S
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

robbier's picture
Replies 1
Last reply 7/25/2014 - 8:59pm
Replies by: Ginger8888

smiley  Bringing everyone up to date.  I had biopsy April 14, then Biopsy April 24, sent to MD Anderson May 26th of 2014.  Came home, Biospy June 20th here at home (with home being south alabama).  I live in  a small town that is approxiately 20 to 30 minutes from Gulf Shores, Al.  Had a pet scan July 23, saw my doctor yesterday.  Being sent for a Bone density test.  The findings on Pet scan states: Metastatic disease suspected in the left symphysis pubis and right mid femur.  (2) Activity with the right chest compatibile with recent surgery as well as midline abdominal pelvic incision.  So bone test, then back to see Doctor to discuss clincial trail, wich Yervoy was discussed.  I have that BRAF gene, and that could mean a combo of drugs. 

I have  already told doctor that when I do the medicine, for them to go ahead and put port in, I only have one vein that can be used due to lymph nodes missing from my right one.  I was stuck three times Wednesday befind finding my vein for the pet scan, (veins deep) and small in hand, they blow.  Stuck twice onThursday at Doctors office, then the vein qit giving that blood they wanted. 

I keep my head up, and I still have a strong faith in God and believe in him.  I know that is where my strength comes from in handling this situation.  So any infromation someone might have that can help me make a good deciision on medicine or treatment will be benefitul.  

 

Iam now considered Stage IV MIB for Melanoma, I have had no kind of treatment and been battling since august 2011.

robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

Login or register to post replies.

Maureen038's picture
Replies 1
Last reply 7/25/2014 - 8:43pm
Replies by: Maureen038

Bill was allowed three more infusions of nivolumbab instead of being taken off the trial. He argued that because it was a terrible allergy season and his esophills count was so high that that might be a reason his hilar and mediastinal lymph nodes were slightly enlarged.  Scans on Monday showed shrinkage in all of his lymph nodes and his esophills count is still extremely high. He had two percent shrinkage and he has now had ten infusions. On his seventh infusion he developed vitiligo that continues to spread from his face, arms and now legs.

Hear are my questions:

1. Is it possible for the nivolumbab to also be causing the esophills count to be so high because it amps up the immune system?

2. Bill has one lung nodule that continues to grow slowly each scan. It is now 2 cm. Is it more effective to do VATS surgery if after the next scan it grows more or would you use radiation?

Thanks for any advice!!

Maureen

Login or register to post replies.

Polymath's picture
Replies 5
Last reply 7/25/2014 - 3:23pm

After going Stage 4, I went on Zel (Dabrafenib) being BRAF positive.  Horrendedous side effects, but very effective in dissolving tumors.  But after only 3 months I progressed.  I took a 2-week break off all meds and immediaily began to recover from the Zel side-effects.  Then started the TAF/MEK combo, which has had virtually no side-effects but has been much less effective.  Stable for a couple of months, but by 3rd month progressing again.  So I am again going to do a washout, this time for 3-weeks or more before beginning Yervoy.  My question is have others had what they feel as better experirinces and results with the cleansing period between drug therapies, or do I run a serious a serious risk of rapid tumor grouth with no inhibitors at work?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 22
Last reply 7/25/2014 - 6:36pm
Replies by: becky15, Teochasse, RJoeyB, Anonymous, LuckyMan51, CHD

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!!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 9
Last reply 7/25/2014 - 5:58pm
Replies by: RJoeyB, OzzieK, Anonymous, Bubbles, Ed Williams, shanemcdonald99

My mom is starting MK-3475 on Tuesday after no success with Yervoy.

Matted nodes removed mid-February 2014. They had to leave a small piece on her vein so as no to compromise the vein/leg.

Lymphodema of her leg and extreme swelling of her abdomen. Fatigue, sleep deprived, can't get comfy, swollen stomach causing loss of appetite and nausea. Scan Last Friday shows cancer moved to nodes in stomach, hence the fluid in her belly. Brain scan negative.

Starting MK-3475 on Tuesday. I'm not sure what to expect.

Doctor stated that if she waited and gave the Yervoy more time to work that she could find herself bed ridden with organ failure in a couple short weeks. This seems to be her only chance.

I can't seem to find anything definitive on what her chances are with this trial drug. It's now an expanded access protocol, so we do know that she won't get the placebo.

Does anyone know where I can find anything that outlines the effectiveness of MK-3475? I know there is no black-and-white here, but I just need something, anything, at this point.

We are all a mess. Worst nightmare. There is no other way to say it. Watching the most important person in your life go through something like this is beyond heartbreaking. Watching my parents cope with it, together, is beautiful and also so incredibly sad. My mom is such an amazingly strong and profound life force to SO many people. I am still in denial and coping - if you can call it that - poorly. I don't even know where to begin.

Login or register to post replies.

MattF's picture
Replies 3
Last reply 7/24/2014 - 6:56pm

quick question...

hey everyone...various bone mets....Spine (few spots), bilateral humerus and bilateral femurs, pubic bone hips etc.

currently in between Chemo Treatments

switching from BRAF Combo to Yervoy in the next week.

 

I have pain in hips and legs and understand that pain from 

Has anyone had physical pain on the skin over or above a bone met?

 

I mean the outside of my shoulder/arm is burning....in a very small spot. But it is intense.

please let me know

Matt

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 7/24/2014 - 3:25pm
Replies by: jualonso

Is there a washout period for Dabrafenib required before the start of antiPD1?  My hubs was supposed to start antiPD1, so he was taken offf Dabrafenib for a month long washout and almost immediately he started to feel sick, nauseous, tired.  Also, in 4 days, he started to feel some of his tumours starting to grow.  Dr. phoned a week later ( my husband was feeling progressively worse) and said it will be another month until hubs gets antiPD1, and when he heard my husband feels this's sick he recommended to go back on Dabrafenib until pd1 is available.  In two days his vomiting stopped, and  his tumours started shrinking again.  

It was shocking -to say the least- how fast everything changed.  I know it's a matter of time until he will get antiPD1. But now I'm really worried that his condition will deteriorate very rapid when he'll go off Dabrafenib in the washout so I'm wondering why a washout period and not take it  until the day before the first pd1 infusion.  Also, let's say, he's taking it without dr's knowledge, will this show up in blood tests?

we were aware how quick things may change when interrupting Dabrafenib, but to get this sick in a matter of days was shocking and eye opening.  And very scarry.

Login or register to post replies.

ncdaniel's picture
Replies 8
Last reply 7/25/2014 - 12:50am

Velma Krumm my wife of 44 years died of melanoma. I want to thank all the people from MRF who post and read this site. I received advice several times on this site that was vital to my wife,s care ( thanks nykaren) . All who post and answer perform a vital service to all.  My wife and I were very fortunate to have a doctor in Boone, No who after removing her tumor and telling us she had stage four cancer to go to a melanoma specialist for treatment. We did that and in am sure because of her care at the university of Michigan she live a lot longer than initially thought.  So for all who read this please make sure you are seeing a melanoma specialist it could extend your life or pro idea cure. I know without a doubt Velma is in heaven and now NED.  All who post , read and answer keep up the good work.

    Daniel

 

 

Trust in God - Live one day at a time

Login or register to post replies.

Velma Krumm my wife of 44 years died of melanoma. I want to thank all the people from MRF who post and read this site. I received advice several times on this site that was vital to my wife,s care ( thanks nykaren) . All who post and answer perform a vital service to all.  My wife and I were very fortunate to have a doctor in Boone, No who after removing her tumor and telling us she had stage four cancer to go to a melanoma specialist for treatment. We did that and in am sure because of her care at the university of Michigan she live a lot longer than initially thought.  So for all who read this please make sure you are seeing a melanoma specialist it could extend your life or pro idea cure. I know without a doubt Velma is in heaven and now NED.  All who post , read and answer keep up the good work.

    Daniel

 

 

Trust in God - Live one day at a time

Login or register to post replies.

casagrayson's picture
Replies 2
Last reply 7/25/2014 - 12:38am
Replies by: Swanee, vicuk

I'm worried.

Strength and Courage,

Susan

Login or register to post replies.

Pages