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
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.

tony9511's picture
Replies 10
Last reply 3/30/2013 - 10:10am

My Onc just called me in this morning.  I was wondering about the results of the node pathologies from last weeks wide excision.  Was concerned the first time I dxed with mel the tracer showed it only draining to my neck.  When the mel recurrence came back and I had my surgery last Tuesday, the pet scan was neg but the tracer showed it draining to both my neck node and armpit node.  Well the neck was pos for cancer so I have the surgery set for neck disection April 12, than I will be on interferon (sp) for a year.  Thanks to all who viewed my ramblings and replied.  I am positive I can beat this crap and live a good life.  Being 39 my goal is to make it as long as possible.  To all the brave souls affected by this terrible disease and their loved ones god bless and I pray for you all.  I am still learning so much about it.

Tony

tonysaratoga@hotmail.com

Login or register to post replies.

parkmk80's picture
Replies 11
Last reply 3/27/2013 - 7:10pm
Replies by: parkmk80, Janner, Anonymous

I have dysplastic nevus syndrome and my derm only gets clear margins on Moderately to severe dysplastic nevi.  I have had about 25+ biopsies and have been reading through my path reports and I noticed that he doesn't get clear margins.  I asked him about this and he said it is not cancer and even if cells are left behind that is not a concern.  What are ya'lls thoughts and opinions on this?  Honestly, it scares me to death!

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 3/26/2013 - 8:11am
Replies by: Tina D, Anonymous

Efficacy and Safety of Retreatment With Ipilimumab in Patients With Pretreated Advanced Melanoma Who Progressed After Initially Achieving Disease Control

 

Clin Cancer Res. 2013 Feb 26;[Epub Ahead of Print] , C Robert, D Schadendorf, M Messina, et al

 

TAKE-HOME MESSAGE

The investigators in this retrospective study of patients with late-stage melanoma who responded to initial treatment and were retreated with ipilumumab after progression, concluded that durable response/stable disease was achieved without added toxicity.

 

SUMMARY
OncologySTAT Editorial Team

It is well known that the immune system plays a dual role in cancer. It can suppress tumor growth by destroying cancer cells or by inhibiting their outgrowth, and it can also promote tumor progression by selecting tumor cells that are better fit to survive in an immunocompetent host or by establishing conditions within the tumor that may facilitate outgrowth.

The immune response against cancer centers on three stages: elimination, equilibrium, and escape. In the absence of complete elimination, persistent immune activation is required to sustain equilibrium between tumor growth and immunity, thereby delaying or preventing disease relapse. However, persisting immune responses are also capable of altering the phenotype of the tumor via a process known as immunoediting. This process has application to the treatment of many cancers, including melanoma.

Developing more effective treatments, including those that target relapses, may center on agents that are able to restart immunotherapy after disease progression to reactivate the primed immune system to recognize and respond to any remaining tumor or tumor cells that have appeared during the tumor escape phase.

One such agent is ipilimumab, a fully human monoclonal antibody. Ipilimumab, unlike chemotherapeutic agents that kill tumor cells by direct cytotoxicity, is known to block cytotoxic T lymphocyte–associated antigen-4 (CTLA-4), thereby potentiating T cell–mediated antitumor immune responses. With that in mind, Robert and colleagues conducted a retrospective study of the use of ipilimumab as retreatment in patients with pretreated advanced melanoma who progressed after initially achieving disease control.

The investigators analyzed the medical records of patients with unresectable stage III or IV melanoma. Patients were previously treated with one or more of the following: dacarbazine, temozolomide, fotemustine, carboplatin, and interleukin-2. Patients received ipilimumab with gp100 peptide vaccine, ipilimumab alone, or gp100 peptide vaccine alone.

The investigators identified 32 patients who met the criteria for consideration in the efficacy analyses. Response rates for the groups receiving ipilimumab with gp100 peptide vaccine or ipilimumab alone were 13.0% and 37.5%, respectively. The disease control rate for the groups receiving ipilimumab with gp100 peptide vaccine or ipilimumab alone were 65.2% and 75.0%, respectively. Of note, 61.3% of patients retreated with ipilimumab survived > 2 years and 6 patients achieved a better response after retreatment than after their original treatment.

There were no new toxicities associated with retreatment with ipilimumab, and toxicities that were seen during initial treatment did not predispose patients to retreatment toxicity.

In closing, this retrospective study demonstrated that the majority of patients with late-stage melanoma who were retreated with ipilimumab achieved durable disease control lasting longer than 2 years. The investigators suggested that if patients meet defined criteria, retreatment with ipilimumab can translate into clinical benefit with no deleterious morbidity.

Access this article »

Login or register to post replies.

atcchris's picture
Replies 6
Last reply 3/26/2013 - 9:33am

Hi All,

Originally diagnosed in Jan 2009, surgery, interferon.  In remission at stage III.  Stage 4 came in Jan 2012. Node in Lung, laprospcopic excision, watched, but more tumors popped up soon after. Started Zelboraf in February of 2012.  Responded and NED until about Jan 2013, tomurs in abdomen and subqutaneous. 

From the abdomen ones, I developed ascites.. drain tube was inserted and I drain approx. 2 liters per day.  We stopped Zelboraf and went to YERVOY.  Symptoms have been fairly mild, but getting more and more winded and fatigued.  Still working except for Doc appointments.  There are about 4 subqutaneous lesions I've been watching.. hard to say if there has been improvement recently, but we have done no scans since starting YERVOY.  Doc says, you're the patient.. be patient.. YERVOY sometimes takes time. This seems to be confirmed by some of your stories.  Now, Potassium levels are somewhat high 6.2.. and sodium is low.  Doc said that MAY be due to YERVOY, but also might be dying cancer cells.  I am on 25mg hydrocortison acetate twice a day, plus .1mg fludro(cortisone? Forinef is what I think he called it).  Been also having some nausea, so have been taking a couple of nausea medications.  Difficult to sleep through the night sometimes, so I use OTC PM medicines sometimes.

Anyone else have anything similar?  Anyone with some good news about what I'm experiencing?

 

My spirits are pretty good.. God is in control, and I know where my future and hope is... but wonder if I have enough time to be patient with YERVOY before trying to get in trials, etc.  I know BRAF-MEK is coming.. is it possible I can switch to that when the FDA approves and have a change it will be effective? 

Thanks for any insight!

Chris Rowlette

Bedford, TX

Login or register to post replies.

belloui's picture
Replies 19
Last reply 3/31/2013 - 4:07am

Hi all, this is my first time on a forum, here is a little bit about me:

I am a 41 yr wife and mother of 2 – daughter 16 & son 10, I thought I was healthy however it turns out not so much...  I was recently (7 weeks ago) diagnosed with melanoma.  My doctors haven’t actually labeled me with a stage yet, well I’m sure they have but they haven’t told me and I guess on some level perhaps I’ve been afraid to ask even though I’ve been at my plastic surgeons office at least once a week for the past 7 weeks.  

I had a ‘suspicious’ mole on my back/right shoulder and knew I should have it looked at, I spotted it August 2012.  It wasn’t until November that I decided to bite the bullet and make an appointment to have my skin checked, figured I probably should as I had NEVER had it done before, yes I know, 41 years old and clearly v. stupid!  I couldn’t get an appointment until January and if I’m honest felt some relief, on some level I guess I knew there was something not right but never in a million years did I suspect it could be anything more than just having it cut out and that in itself was enough to scare me, how little I knew and still do...  

Jan 15, 2013 I went to my first skin check appointment and the doctor confirmed it would need to be cut out, I had plans for that w/e (at the beach) so she told me to come in when I got back, I had it removed Jan 22.  Received a phone call less than 24 hours later asking me to come back in to see the doctor, I was at the theatre with my son so made an appointment to go down first thing the next morning – still completely clueless...  Thursday 24 Jan 2013 I walked into her office only to be told I had a level 4 melanoma.  I had absolutely no idea what she was telling me, she did show me a diagram which made me realise this was pretty bad news as there were only 5 levels, thank goodness my husband isn’t as clueless as me and had cancelled his breakfast meeting to come along, he asked all the questions and I still have no idea what else was said, other than I needed to make an appointment asap with a plastic surgeon to have a WLE.  Called the plastic surgeon’s office to make appointment and was a little surprised (and scared) at how quickly they could get me in – that afternoon!  

The plasic surgeon explained how melanoma works and that she would need to take a v. large area from the site of the tumor and it would require a skin graft (taken from my leg), because of the position of the tumor she didn’t recommend a SNB, explaining it could go to either my neck or armpit so isn’t v. accurate, sent me for a PET & CT scan, the radiologist decided at the time they would also do a brain scan – can’t even begin to tell you how much that panicked me, I was convinced they had seen something in my brain and that is why they were now also doing this extra test my dr hadn’t ordered.  I had the WLE done the next day and was sent home to wait....  4 long days later (did include a w/e) my doctor called to tell me the pathology & scan results indicated the melanoma hadn’t spread yet but I should also remember the scans are not always accurate and can’t detect a tumor unless it is 5mm in size, so now I sit and wait like a ticking time bomb.  

I have nearly recovered from the surgery, skin still hasn’t quit healed over yet but it’s not too far off.  But what do I do now?  I feel like I just don’t know enough about this dreadful disease.  I’ve read all the pamphlets from the doctors and from ‘The Melanoma Patients Australia’.  I’ve trolled the internet reading blogs and personally that is really where I’ve learnt the most - honest, heart breaking stories from real people.  I’d love to hear from anyone that can direct me in the direction for more honest, real information.  

‘Pale girl speaks’ has been recommended to me to read, but I have to order online as I can’t seem to get in here in Australia from a bookstore and it’s not available as an ebook.  Any other recommendations would be greatly appreciated. And what I should do now...  I feel like I need to get a second opinion, my doctors are both going to do skin checks and lymph node physical examinations every 12 weeks but I have no idea what my other options are, they just tell me not to stress...  Really???  I feel like I am on an emotional rollercoaster and a bit of a drama queen when my thoughts turn dark.  Like me so many of my friends and family had/have no idea about this horrible beast, they think you can cut it out and you’ll be ok.  I know I am one of the lucky ones (if you can say that) because It hasn’t shown up in any tests anywhere else in my body but I feel like I need to do something to be more proactive.  I had a clean diet before but I now have become quite extreme – no sugar, processed food or red meat at all!  I’ve been given the all clear to go back to the gym (on restricted program until the skin heals) and both of these things do help but I need more... Any suggestions form others that know what I am going through would be more than welcome. 

Login or register to post replies.

tony9511's picture
Replies 6
Last reply 3/25/2013 - 8:31pm

Hi I was first dxed with Melanoma stage 2 clark IV last march and had the WLE surgery in May 2012.  My lymph node that was discected was near the neck area.  In Feb 2013 the Melanoma returned.  I just had the surgery.  The Pet scan was negative, although the Melanoma showed that it was draining to another lymph node near my armpit as well as the neck (same node as before).  I still have not got the pathology reports back from the lymph nodes from this recent surgery.  My question is 1. is it bad to have melanoma recurrance, and 2.  is draining to a second lymph node bad as well.  God bless all that are affected by this disease and I would appreciate any feedback.  The melanoma was on my arm.

 

Tony

Login or register to post replies.

Moodypoodle's picture
Replies 4
Last reply 3/24/2013 - 9:32pm

 

On Friday I got the results of my first post-Yervoy PET/CT scan (also results of brain MRI done the same day).  By the way I’m happy to say I was able to tolerate all 4 doses with minimum side effects. The good news is that the scans show no evidence of disease in the previously involved areas (liver, lungs and abdomen).  YEA Yervoy!!  Looks like I am a responder—woohoo!

However, the brain MRI shows a teeny spot of disease that wasn’t there in January when I had a problem with my pituitary.  The way I understand it, that teeny spot is what we can see.  There may be others we can’t see at this point.  Doing nothing is not a good option!  Next stop: radiation.  My retinue of docs now includes a radiation oncologist and a neurosurgeon.  All that training yet I’m the one who’s stuck with the decision. Sigh. I can go with whole brain radiation and not leave anything to chance OR do cyberknife and zap what is showing.  I am leaning in the direction of the cyberknife initially and then at the first hint of another spot, doing the whole brain thing. What have others done in similar circumstances?  What would you do??

Ann

Every Second Counts!

Login or register to post replies.

bluevit's picture
Replies 7
Last reply 9/21/2014 - 7:32pm
Replies by: bluevit, Pamelarun, Janner, Anonymous

Hello,

I have a biopsy scheduled in 2 days of my thumb nail.

Is there anyone that has experience with subungual melanoma, or Acral Lentiginous Melanoma?

Please see this picture of my thumb.

http://nz.skyflux.com/IMG_2416.JPG

This is after watching it grow out from the cuticle for 2 weeks.

What kind if biopsy will I get? (punch biopsy?) and where exactly is the best place for them to take it? What kind of accuracy should I expect from the biopsy?

I am scared and trying to get a diagnosis asap because I have had other rare health problems over the past year that a heap of blood tests was unable to figure out other than probable psoriasis and food allergies. I was 99% back to normal curing myself through a healthy diet, but now this!!! As you can see my thumb nails used to grow out split back when my skin was leaking lymphocytes and falling off all over my body. All my other finger and toe nails are growing out perfect now except this one.

Thank You

Login or register to post replies.

MaryD's picture
Replies 6
Last reply 3/25/2013 - 12:37am

I want to share some news that I hope will encourage all of you who are battling this difficult disease.   I was diagnosed 12 years ago with melanoma, had 5 recurrences including a lung metastatis in 2007, did 1 yr INF, peptide vaccine trial, radiation, Ipi trial, and 6 mos of pulsed IL-2 treatements.

Last Wednesday I had my 6 month scan which revealed all is clear - 4 1/2 years since the last recurrence!    I am now on the countdown to strive for that 5 year milestone in September.

I thank God every day for this gift and will never take it for granted.      This is a difficult journey to be sure, but know that there is hope, and there are many of us stage IV survivors out there thanks to those who devote their lives to research and finding better treatments.

I also have to thank the MPIP for playing a huge part in helping me learn so much about this disease and bringing amazing, courageous people into my life.

Wishing all of you strength .  .and hope . .in your battle

Mary

 

Login or register to post replies.

SteveT's picture
Replies 14
Last reply 4/5/2013 - 3:46pm

Hello,

Just got back home from Chapel Hill after a WLE and neck dissection. Post-op pathology reports showed some activity atop my head at the primary tumor site (pushing me to 3c) and no sign of spreading beyond 3 lymph nodes (out of 21 removed) in my neck. I have a follow up on Tuesday when I will also meet with a radiologist.

Apart from some stiffness, I feel great. I just got back from a long walk to the grocery store. 

How necesary is radiation? The docs want it and they haven't failed me. What is the liklihood that all the cancer was removed? Can someone point me at a study showing definitive benefits of radiation in my circumstances? How much fatigue is involved? Side effects? Has anyone opted out of all post-op treatment in favor of watch and wait and diet and exercise? Has anyone regretted getting radiation?

Thanks for all the support while I was in the hospital.  Steve

Make today count

Login or register to post replies.

Pages