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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H555's picture
Replies 9
Last reply 3/28/2013 - 10:00pm

I've updated my profile to give more in depth info but here's the summary. I was diagnosed at stage 4 about this time last year with numerous nodules and malignancies in my lungs. prior to that had been stage 3 for about 10 months when an inguinal lymph node was found to be malignant, 16 years after a primary on my calf. had LND, 17 lymph nodes were removed, only the 1 was malignant. had high dose radiation on that area after the surgery. 10 IV Interferon treatments Nov 2011. Feb of 2012 had breathing problems, subsequent scans showed info in first line of this update.  Began Zelboraf and hi dose radiation in late feb of last year. had some dosage adjustments intially, ended up taking 3 and 3. Scans were good until Feb of this year when one remaining node that had been the largest began to growand was joined by a 2nd node of the same size in the same lung. My oncologists locally and at OHSU referred me to a Phase I clinical trial at OHSU and have been in the process of being screened for that, more screening this week but i'm scheduled to begin the new treatments a week from this wednesday. The trial is being conducted at the OHSU Knight Cancer Institute. Title is "EMR200066_006: an Open-Label, Phase Ib Dose Escalation Trial of Oral Combination Therapy with  MSC1936369B and SAR 245409 in Subjects with Locally Advanced or Metastic Solid Tumors. " the Sponsor is EMD Serono, inc.  the drugs are an MEK inhibitor and a combination P13K and mTOR inhibitors.

This trial is also enrolling patients with corresponding breast cancer, Non Small Cell Lung Cancer and Colorectal Cancer.  I'm feeling pretty lucky to get into this trial and will post how it rolls out.

I had hoped to be one of those long term responders to Zelboraf because it worked so quikcly and so well for me, I had very few of the side effects, all of which were quite livable but it was not to be.

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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!

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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

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randallgford's picture
Replies 20
Last reply 3/28/2013 - 7:09am

We had our first onc appt since diagnosis of malignant lung mass. I really liked the Doctor

efficient, informative and great manner. I had a list of questions based on my research here on

the board and he addressed them all before I asked. Game Plan: Brain MRI and PET scan

Friday to see extent of disease. Will do BRAF analysis on tissue from lung biopsy. He is

planning: Zelboraf if BRAF positive; IPI if negative. Will assess response then consider potential

clinical trials at Sylvester Miami. Based on CT scan, he doubts 3.8,m lungmass is isolated so

isnt talking surgery as yet. He also trained with and knows the Dr. at Sylvester Center

Miami we used with first 2001 diagnosis (2b WLE with negative SNB). My husand is a very

calm person (I've always jokingly called him my Dalia Lama (sp?)) and has a positive attitude so

the oncologist said these people seem to respond well. When I asked best/worse case scenario, he

said "I can see you've done your homework so you know the stats- but forget them because he is

an individual and the only stat I need to think of is his - and it is unknown. I really liked that answer.

I now have hope and a more positive attitude. 

Vicki, his wife

Never give up!

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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

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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!

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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?

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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

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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/

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JakeinNY's picture
Replies 1
Last reply 3/27/2013 - 12:19pm
Replies by: newyorkguy

Google "ketogenic diet cancer" and you'll find the Wurzburg trial in Germany, the RECHARGE trial in NY, or the trial involving a Dr. Seyfried on 2 young kids.

This diet does not cure (at least in the great majority of cases so far) but it may well keep tumors from growing. It is not designed for one particular cancer, just for those whose tumors light up on PET scans.

I'll try to get back on and get you the links but you should be able to come up with them easily.

The naysayers will say "They were limited trials or they did not include melanoma patients or blah blah blah....but my answer to the naysayers is to tell that to the people that had NO OPTIONS left and did well.

The interview with Dr. Eugene Fine, M.D. on the site "Livin la vida low carb" is honest and informative and so worth listening to.

Best wishes everyone.

Do the best you can.

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Amanda's picture
Replies 6
Last reply 3/27/2013 - 11:20am
Replies by: Anonymous, Amanda, Pat-Wife of Carl, Tina D, POW, Owl

March 9th, 2012 randy was diagnosed stge IV, with no primary.  Lung  and brain lesions, and another tumor in chest wall.   Today marks a year, and he is still here.  Man it seemed like that year flew by...He first had radiation and a craniotomy, followed by the rest of the radiation, then yervoy...now he's had two doses of merk Anti-pd1 and is doing great.  Tumors  have stabalized.  Plus, we just took a 3 day trip to las vegas.  I pushed him up the stirp and through the casinos in his wheel chair, because there's no way he could handle that much walking. (He's still not been able to gain a lot of muslce back after losing a ton of weight from a tumor obstructing his bowel.)  Vegas is kind of wheel chair INCONVENIENT ...not in accesible...but a pain in the butt!  It was worth it though.  Hope everyone is doing well out there tonight.  good health wishes sent to you all.

-Amanda-

"Give thanks in all circumstances"

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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!

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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.

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