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
Lyssa's picture
Replies 5
Last reply 3/28/2013 - 3:31pm

Hi, my mom (age 71)  was recently diagnosed with stage 4 mucosal melanoma.  It started in her nose, she had polyps removed and they turned out to be melanoma.  She was sent to Rush University in Chicago and was to have surgery and radiation to her face.  However, a PET scan turned up melanoma in the bones of her spine and liver.

She is currently getting IL-2.  They had her do high dose radiation to the spinal bones last Friday and then started IL-2 on Monday.  Dr. Kaufman reported that recent research is finding doing that radiation before the IL-2 may dramatically increase response rates to the IL-2.  I just found out she is going to be released from the hospital tomorrow.  She got six doses of IL-2.  I guess she had a rapid heart rate, mouth sores, and was just generally very out of it so they are stopping.  They said six is an average number of doses.  I am having trouble finding information on the number of doses, does that seem about right?

She will have two weeks off now, then go back in for another week of IL-2.  I guess after that they will wait six weeks and give her a scan, then go from there.  Here is praying that it will work!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 3/30/2013 - 12:02pm
Replies by: lou2, SoCalDave

Can melanoma look like a tiny black pinprick on the skin?

I realize this can only be known for sure with a biopsy, but wondering if anyone has ever seen this manifestation in a patient not under any kind of systemic treatment.

Login or register to post replies.

G-Samsa's picture
Replies 6
Last reply 3/29/2013 - 12:38am
Replies by: jeffjohn78, jim Breitfeller, Anonymous, G-Samsa

I noticed that in an earlier post a member (is that what we are?) indicated that he was having a very positive response in a trial that paired Ipi with a new compound (INCB 024360). How much promise does this approach offer-- anyone know? It seems to be different than anti-PD-1 and Ipi in it's attack objective..... I noticed that restrictions in the current trial require that you've had no prior treatments with immunotherapy compounds. Just wondering if there is a belief that this may eventually open up another avenue for us to follow. I myself am in an anti- PD-1 trial --but it would be nice to know that the arsenal I may eventually need to rely on is growing.

Login or register to post replies.

meeshka6059's picture
Replies 7
Last reply 3/31/2013 - 3:23pm

It is with great sadness that I tell you that I lost my father to this dreaded disease yesterday morning at 7:30am. He went peacefully and pain free, surrounded by love. Thank you for all your support and kindness, and thank you for being here with me on this journey. With love and light. ~Michelle

Login or register to post replies.

buffcody's picture
Replies 8
Last reply 3/30/2013 - 9:50pm

I was at my oncologist's today, and he feels the course of ipi was probably successful given the fact that the one tumor I have has not grown much if at all and, despite having had two brain tumors, there have been no new tumors anywhere over the last two months.  After one more set of scans two months from now, if all stays more or less the same (I will have the one tumor removed surgically), he would recommend a reinduction of ipi.  He did warn, however, that, as I am on Medicare, that Medicare seems to not pay for a reinduction of ipi.  Have any of you faced a similar situation?  Was that your take also?  Can you think of a path around paying $200,000 or more out of pocket.  The University of Michigan Hospitals, not surprisingly, are not going to pick it up.

Login or register to post replies.

Wolverine's picture
Replies 4
Last reply 3/28/2013 - 11:06pm

I am stage IIIC melanoma with unknown primary.  I have been taken Interferon since November 2012.  Overall I have done fine with the exception of being wiped out (tired) and a little weight loss.  I haven't had the energy to exercise.  I am seriously considering taking off for the spring/summer.  As I understand, Interferon has not been proven to extend overall survival rates.  I have come to the opinion that I have a better chance of survival if I am not worn down and unable to stay active.

Wishing everyone well.

Everyday is a Gift so Fight Strong, Live Long

Login or register to post replies.

DonW's picture
Replies 24
Last reply 4/11/2013 - 7:41pm

Unfortunately, the news isn't good. Dian's husband, Bob, called me this morning with the news that after going home from her IL2 treatment, Dian had a brain hemmorage and is now back in Sacred Heart hospital in Spokane. Apparently the bleeding is stabilized now, but Dian is in and out of consciousness and she has motor problems on one side. Bob thinks she might have had an undetected brain met that caused the problem. Not much else to say other than I'm hoping she come through this.  

Login or register to post replies.

jeffjohn78's picture
Replies 7
Last reply 3/28/2013 - 11:29am

Hello,

 

Got great news today!  Had previously a 1 cm tumor in y arm, 4.3 cm nodule in my lower left abdomen and 1.9 cm nodual in my upper left abdomen.  As well as 7 mm and 2mm spots in my brain.

 

Found out today, both brain spots are gone, the arm tumor is gone, and both abdomen tumors are shrinking!  best news I could have heard....

 

I am currently in a clinical trial at the Angeles Clinic in Los Angeles...Ipi and experimental pill.  pill doesn't have a name just an bunch of letters and numbers lol.  Its a new trial as I believe I was only the 2nd patient enrolled.  I believe the ful name of my trial is on my profile.

 

Feeling very grateful today to say the least!

 

Jeff

Login or register to post replies.

randallgford's picture
Replies 1
Last reply 3/27/2013 - 6:20pm
Replies by: Anonymous

Several times I've gone back to my profile to put dates and details.

I save it, then the next time I come online its not there. What could

I be doing wrong?

Login or register to post replies.

Tim--MRF's picture
Replies 3
Last reply 3/27/2013 - 11:33pm

I have good news and bad news.  

The good new is that we now have a functioning Chat room.  We purchased an off the shelf, bare-bones module while trying to fix the fancier version.  

The bad new is that because this is a free standing module it doesn't link back to the "who's chatting" section of our website.  People may be in chat, but you won't be able to tell without entering chat yourself.

I have a couple of suggestions about this:

1) Try dropping in to Chat when you have time to see if anyone is there.  If possible, linger for a while in hopes someone else will drop in.

2) When you know you have time to be in Chat, post on the main bulletin board that you will be there.  Others may see the post and choose to join you.

3) Find a set time when you will be in chat and post a message about that.  (Be sure to include time zone information!)

I hope we can revive the chat community.  I have great memories of meeting new people, talking about good food, good fun, melanoma issues, family issues.  

Oh, and we think we have solved the problem with slow posting as well.  A glitch in something called Apache....

Tim--MRF

Login or register to post replies.

mbaelaporte's picture
Replies 5
Last reply 3/31/2013 - 11:49pm

I have enjoyed reading of the improvements in health and disease recorded by some of the participants in these trials..Praise be

most recently noticing Melanoma in the City ( I've tried clicking reply to your blog for communicating  but maybe doesn't work ) and the team of Randy & Amanda

Would you please talk to how your participation is being financed - does your insurance company fund trials? Is there a charity or organization that  recognizes  that patients  play a huge part in the development of these medicines that are providing hope & wellness and that we need assistance in the evolution of said medicines.

I touched on this in prior post but some fine print and elaboration has come to pass.  Upon hearing of my rejection from my ins. co. I asked about self pay not wanting to let pass maybe the only thing that will help prolong my life.  There was no real follow up other than yes I could be considered if I chose to go that route.   Without hearing back I had to formally request a study budget from my provider and after a little prodding  I received an email from my provider 15 plus days later called a "breakdown" of my costs:  just south of $ 160,000.00 with an itemization of say ten costs like CTscans  -  $78,932.00 - no designation of how  many or for how long a treatment schedule this deposit was to cover.

I replyed back re: their breakdown;  you call that a breakdown; a breakdown is what I'm having right now contending w / this news.

this email was cc to a number of others & I received  a more compassionate letter the next day from someone directly involved w / the trial and the deposit number had been reduced to a little under one hundred thousand dollars and given a time frame of six months treatment.

I'm looking for a "competitor" trial provider,  organization that supports all the legs of trial costs,  etc...

news on how you are doing it,  your success... all stories most encouraged, thanks,  john 

Login or register to post replies.

sailinjeffnk's picture
Replies 4
Last reply 3/27/2013 - 2:10pm

I'm going in for a VATS lobectomy to take the lower lobe of my left lung this Thursday (3/28/13).

 

I'm a 29 year old male.

I was previously stage iiib with 2 involved lymph nodes in right neck, had full rt neck dissection, radiation and 1 mo high dose interferon and 3 months low dose interferon before stopping in October of 2012.  Scan in November of 2012 showed a dim spot in the lung and we watched and waited.  Unfortunately it got bigger and brighter and is too deep in the lung to biopsy so docs are going to nip it in the bud and take the lobe.  This is the only spot that is showing up anywhere, so I'm hoping that this procedure is the end of it.

Has anyone had a VATS lobectomy?  

 

Would love to hear some tips from warriors that have been through this one.

My photography: http://jeffreyswansonphotography.com/

Login or register to post replies.

LynnLuc's picture
Replies 9
Last reply 4/14/2013 - 3:15am

Today is my 3 year NED ( No Evidence of Disease ) Anniversary with Stage 4 Melanoma!e 4 melanoma!- Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

randallgford's picture
Replies 4
Last reply 3/26/2013 - 1:40pm

Sunday morning after coffee and shower, my husband got a heart palpitation. He has a history

of minor palpitations (about 120 -130 bpm) and lies down, meditates, bears down, takes a lo-dose

xanax and it goes away. Only 1 or 2 times a year. This time it wouldnt stop and we have a monitor

I checked it was 189! Hospital is 5 minutes away, so i rushed him to er, they gave him a iv med

that basically stopped his heart for a few seconds to interupt the rhythm. Worked immediately.

Then of course,, ekg, ct, blood work, everything normal, kept him overnite for observation.

MEANWHILE, we have 2nd Yervoy scheduled for Tuesday, mti/ct prep Wednes. for cyberknife Friday

for 5 small brain mets. Oncologist came in and saw him and sees no problem in continuing the plan,

does  not think treatment effected heart and suggested a long-acting beta blocker for the heart palp. issue. Hubby feels

better and we are going for it! but honestly what a roller coaster. But the great news is, BRAF test came back positive,

so Zelboraf is on the table but doc ants to continue Yervoy and assess after scans, then depending on response may 

start Zelboraf. I am hopeful, we at least have a plan B. Meanwhile Im fighting cold/sinus/sore throat/who knows what,

pretty miserable and trying to care for hubby without getting him additionally ill. Tough couple of days.

Vicki

Never give up!

Login or register to post replies.

Janet Lee's picture
Replies 6
Last reply 3/27/2013 - 2:25pm

My husband Don began Zelboraf on March 15. At that time, his LDH was 286. One week later, his LDH was 201.

How long does it typically take to know if the Z is working? Does it matter how much disease there is? (Our doctor says Don's disease is very advanced.)

Janet Lee

Login or register to post replies.

Pages