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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Charlie S's picture
Replies 116
Last reply 3/26/2013 - 12:20pm

Been a lot of dying going on around here due to melanoma  of late, but there is also a lot of living going on as well.

For those of you that don't know me, please do not think I am being cavalier about people dying from melanoma.  My girlfriend died in my arms as a result of melanoma(who I met from here by the way).  I have been Stage IV melanoma since 1996 and was Stage III 9 years before that and am now in my 8th recurrence as I am in the middle of my 23rd year since diagnosis with an unknown primary.

  Many people from here, both dead and alive I have met physically over 10 years  of posting here when it was MPIP and more than once I wish it was me that died and not them.  They fought hard, did the stinking surgeries, did the stinking treatments, did the stinking clinical trials and suffered and fought with silent screams as they awaited scan results and fought hard with many by their side

.  Even today, those caregivers and families continue the fight against melanoma in the honor of those they lost on the cancer battlefield with events, fundraisers, quilts, campaigns and are standing on the doorsteps of government to build on their legacy.

Every one of them bitch slapped melanoma, drug it down the glistening hallways of clinics, radioology departments,  hospitals, and with broken bottlles jabbing at melanoma with real anger and rage in an effort to defeat it drug it to the gutter and gave it their all.

So, to those we have lost and their families and caregivers, I salute you.

However, to paraphrase my supercalifragilisticexpealidocious super melanoma buddy Amy Busby,,,,,,,,,,,,,,,,,not today.

So I would ask that all of you Stage Fouries chime in, declare yourself undead irrespective of the odds and say "not today"

Sick, lame and lazy, speak up Stage IV people.  One of our only many jobs is to show others that in spite of the odds and statistics, people DO live and survive melanoma.

Call me undead.  Speak up please Stage IV people!

 

Charlie S

 

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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

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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 »

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eric w's picture
Replies 20
Last reply 3/26/2013 - 12:37am

Hi my wife found out she is BRAF negative. Can someone point me in a direction of new drugs targeted for negative types besides Yervoy, IL-2, PD-1...just trying to stay ahead of the curve if the Yervoy that she is to likley start in a few weeks does not work...first choice if it does not would be PD-1 likely...but just trying to figure out other options for negative types. Thanks

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Bobman's picture
Replies 5
Last reply 3/25/2013 - 10:03pm
Replies by: CLPrice31, Janner, Bobman, Anonymous

Its been about two years since I first posted about my first primary on my neck. Since Januarary of this year I have had four more located on my back, with depths from .4mm-.7mm. So this makes five in two years. All treated with wle, and I am still a little sore from my last two wle's last week. I have the dysplastic nevi syndrome, and have north of 500 on my body. My derm told me I have tied his patient record for multiple primaries, and the surgeon told me it was a bit unusual.

So, my questions are, how unusual is this to get so many primaries so fast? With the atypical syndrome, is this what I can continue to expect? Am I now getting into a different risk factor for progression? With so many changes happening on my body so fast, I am not sure what to make of it. I did in fact find the last three, as I am being vigilant about watching for changes, but it is a challenge with so many to look at.

Any suggestions and or advice are much appreciated.

Also looking forward to chat getting up and running so I can come in and vent a little and talk with some of you i have met on there before.

Thanks,

Bob

We are one.

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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

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Tina D's picture
Replies 17
Last reply 3/25/2013 - 3:15pm

I went to St Louis today for my first post-ipi PET/CT. Scans show the main tumor shrunk from 3.6cm to 2.1cm. Dr L is very pleased with this response. We will rescan in 2 months. Meanwhile, my endocrine issues are steadying out a little. Prednisone decreased to 20/day.

It is amazing to still be alive, it truly is. I am so thankful. We are rejoicing this fine evening and first day of spring ( even though it is below freezing here in St Louis!). 

Tina

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MarieM's picture
Replies 6
Last reply 3/25/2013 - 7:58am
Replies by: mike_nj, dian in spokane, Anonymous, King, Hstevens0072, vivian

I just got a call from Dian!

It was soooo good to hear her voice. She sounds GREAT!!!! She is having some computer problems but finished 13 of 14 bags of IL2. She is having some side effects...but managing them like the trooper she is! Her Bob and friends have been by her side.

 

She is hoping to be discharged either tomorrow or Sunday.

 

She is truly, AMAZING!

 

Hugs, Marie

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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

 

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Jewel's picture
Replies 7
Last reply 3/24/2013 - 9:54pm

Hello,

 

When my husband was diagnosed back in 2010 things looked and felt so final. My husband goes for his

scans this Monday, if they are NED we have been blessed with 18 months clear from last recurrance.

With all the advances they have made in the last couple of years it seems now that the normal protocal seems

to be Zelboraf, Yervoy and then Anti-Pd1 in that order. With all the advances would you still try to push for a

clinincal trial? Just trying to get a plan A, B + C. My husband is stage 3C. I know this question is asked endlessly

but I also know that there are alot of people who do ALOT of research.

 

Would love to hear some opinions....Thank-you

 

Jewel

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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!

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awillett1991's picture
Replies 3
Last reply 3/24/2013 - 2:01pm

Finished Ipi Dec 3rd, thyroid levels high then closer to normal, bouncing around during and since. Dr says he has seen it before and believes it will eventually settle down to a consistent level - hypothyroid- treated with synthroid. I'm so sleepy during the day, have plenty of energy to do what I want, just sleepy when I sit down for something. No med changes. Nurse offered to run thyroid blood work but I passed since they wont treat it yet anyway, why bother? Anyone had Ipi wear out their thyroid? How long did it take to stabilize?

She really doesn't think it's the Zelboraf either though I am suspicious...

Thanks, Amy

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bikerwife's picture
Replies 3
Last reply 3/24/2013 - 1:34pm
Replies by: kylez, susanr, awillett1991

we had some heart problems after gamma knife we ended up staying overnight and in middle of night he had a seizure. Scan showed everything was ok .Dr aid they treated 32 pin sized spots on brain. he came home Thursday is doing well. treatment today. Ldh down to 327 was 800

What God leads u to he will. Lead you through

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2004livestrong's picture
Replies 2
Last reply 3/23/2013 - 3:47pm
Replies by: bluevit, Janner

I have Acral subungual melanoma under the toenail in 2004. After surgery I was NED until last year when it appeared in two lymph nodes. I now have inoperable mets in my lungs. I am not BRAF mutant and now being tested for the C-KIT mutation. What is the more effective... Ipilimumab or imatinib? Thanks. 

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Richard_K's picture
Replies 6
Last reply 3/23/2013 - 11:23am

 

At my last regular check-up on February 27th, my bilirubin was once again elevated and it was decided to retest in three weeks rather than the normal six.  The nurses also suggested that lack of proper hydration could be a contributing factor.  I decided to make a chart for myself where I would be able to keep track of my fluid intake.

Good news yesterday after the three week retest with a telephone call that my bilirubin had returned to normal.  A side benefit was that my creatinine was also greatly reduced.  Proper hydration is now my new best friend.

The day before this call I got another good telephone call, although it was not so good for my wife, she would be losing her night light.  Since I am still in the Zelboraf phase II clinical trial, the protocol called for scans every six weeks.  My doctor was finally able to get permission to get that changed to every twelve weeks; I won’t be glowing as much anymore!

Dick

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