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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Marilynn Eiken's picture
Replies 1
Last reply 1/17/2013 - 8:02pm
Replies by: SStamps

I've written several times regarding my husband Tye.  Started with a mole on his back.  Mets straight to the brain and nowhere else back in Oct of 2011.  WBR and gamma knife followed.  Thought we were chugging along pretty good.  Started leukine last summer.  Then in November a small liver tumor which we irradicated with ablation therapy.  Then  in Dec the MRI showed enough change for the surgeon to say "I think its necrosis but its bigger and i think we should take care of it."  Low and behold.....melanoma grew back right where it seeded before.  Yesterday we actually got to see pictures of it.  We also got to see the "thin film" of black melanoma running along a vessel in the lepto menengies (sorry I know I spelled that wrong).  My husband follows no standard path.  Where there is LMD (leptomenengial disease)  there is usally widespread tumors.  He doesn't have any.  Where there is LMD there are usually symptoms.  He's very stable.  Some "maybe" symptoms but they can be explained through other pathways, ie-hearing has been very bad since surgery.  This happened last surgery and post WBR and hearing returned.  Abruptly after surgery, hearing TERRIBLE.  Has some  back pain.  Has always had some back pain and it doesn't feel different.  This melanoma is so sneaky and tricky. 

We are leaving next week to go to my son's Basic Military Training graduation from the Air Force.  When we return we will start ipi.  I feel its a good choice because we are shooting for long term effects and he has no real "measurable" disease which would be more Zel directed as he has a BRAF mutation.  Plus, it will be another stepping stone to the Anti PD 1 trials.  (Which I learned yesterday are coming to Mayo!)  I finally feel like our whole team of doctors is on the same page as we are.  Treat agressivley, goal is survival! 

I did some research on LMD last nite.   Not good.  A lot of my good warm fuzzies got lost in the literature.  One thing I have learned from this site is we are NOT statistics.  We are individuals and we have to hold on to that hope.  So Im hoping there are other lepto warriors out there that can share their insite with me.  I thought I found some mention from some of you so thought I'd put it out there again since the posts I found were from 2011.  We've got to beat this beast!

 

Marilynn

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LynnLuc's picture
Replies 5
Last reply 1/17/2013 - 5:46pm
Replies by: Snickers60, POW, Anonymous, DeniseK, deardad

 

Written 56 minutes ago by Brandon Haley

Quick update. Mom is at the Rainey hospice house in Anderson. She has regained some speech, but it is strained. We have had a couple of short, coherent conversations, but that is all. She is excited to see savannah in the morning. Confusion does not really describe her state of mind, but it is close. We are having some good moments though. We were told that the DEX would be continued as she showed some response. Thank you all, and i will post more tomorrow.

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"

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DeniseK's picture
Replies 18
Last reply 1/17/2013 - 5:38pm

Hello Everyone,
I wanted to update everyone on whats been going on.
First of all the actual wbr was a breeze. I started losing my hair about the 7th treatment pretty bad. I chose to cut it all off and donate it to Love For Locks, I donated over 22 inches. I've always had long hair so being bald has been a trip but a very small price to pay. I have a sexy new redhead wig that was donated to me from a wonderful person named Jill at Artistic Salon in Auburn CA.
Current side effects from wbr are kind of hard to figure out since today is also my 9th day on Z. My head is itching like crazy, this could be because I shaved my head and still have stubbles, my ears, forehead, and head are burned like a sunburn so this could be causing the itching as well. Monday was my last day of dex and I had a horrible headache for a couple days, pretty much debilitating so I took half a dex yesterday and it helped, no dex today and headache is better. Food and drinks tastes really weird, my fiance doesn't think I should cook because I over salt everything :) I've had some nausea but got some Prochlorperazine 10mg and that helps. I'm taking a bunch of pills, in the am 4 z, 1prochlorperazine, 1morphine sulfate 20mg, 1 hydrocodone 10mg, supplements I'm taking are, turmeric, vit c, vit a, vit D3, cod liver oil, benfotiamine, and graviola extract (sour sop). Same at night minus the supplements. Any other supplements you can recommend?
Overall I feel pretty good no joint pain or rash as of yet.
The Zelboraf is kicking butt on my tumors!! I have the tumor on my arm that I'm using for a marker and its shrunk over 50% in a little over a week!! My breathing is easier and hardly any pain in my chest and back!! Its like a miracle!! I know my results could be short lived but I could also be a long term responder like Dick, Al, and many others. Just being a responder is a plus, this at the very least buys me time for the next miracle!!
I've finally been approved to go see Dr. Minor in San Fran, I go this Friday. I'm going to ask about the dosage of Z, clinical trials, any evidence of z working on the brain, and what he recommends on going forward. I'm super excited to get his opinion and visit the big city.
Brain MRI scheduled for February 15, results not until the 21st from the radiolgist but my dr said he'd try to get them to me sooner.
Does the z cause food to taste weird? Hard to determine whats causing what. :)
I've been hoping for an update from Linda Haley has anyone heard?
Lots of love to you all,
Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Replies by: JakeinNY, Anonymous, Swanee

A 42 minute audio piece (there is a 1 1/2 minute commercial at about the 18 1/2 minute mark so just fast forward or be patient!) with Dr. Eugene Fine, MD (Albert Einstein, Montefiore Med Ctr) from NYC, who talks about the ketogenic diet for cancer patients, explaining what it is all about, and the results of his RECHARGE trial in which 6 of 10 cancer patients (none with melanoma) had stable disease (5) or a partial regression (1) that everyone should at least listen to and possibly talk to their oncologist about :

http://www.thelivinlowcarbshow.com/shownotes/6898/628-dr-eugene-fine-use...

 

Dr. Fine's profile at Albert Einstein College of Medicine

http://www.einstein.yu.edu/faculty/2013/eugene-fine/

 

A ketogenic diet trial going on right now that is taking melanoma patients:

http://www.clinicaltrials.gov/ct2/show/NCT01716468

 

I'm sure that everyone (including myself) would love to take a pill and be cured of melanoma and all ailments, but if the answer can be conventional treatment along with "other" methods, then so be it!!!

Do the best you can.

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bikerwife's picture
Replies 3
Last reply 1/17/2013 - 9:26am
Replies by: awillett1991, bikerwife

Lynn had a 8 week checkup today. the leg level jumped from 232 to 320. Dr said that wasn't to bad cause it was far from being the 500 to 700 and even a 1000 like it was before Zelobraf. He said he will scan body in 4 weeks and check blood again then. Lynn has 3 wart looking things he wants dermatologists to remove. We have brain scans next Wed. Hope that turns out good. We were hoping to be NED at next scans but with blood jumping up don't think it will happen.                

I also asked about the on and off treatments with Zelobraf and he said yes some Dr. we're beginning to do it and it may be an option. I also asked about anti pd 1 and he said they would have it in Feb. Guess he was talking about a clinical triall.

What God leads u to he will. Lead you through

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Sorry I posted twice by mistake

 

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Ronskidtexx's picture
Replies 6
Last reply 1/16/2013 - 11:27pm

It has been about one year since diagnosis and surgery for my Stage IV Melanoma.  I had surgery to remove two tumors and radiation treatments to my neck. I had a radical neck dissection along with a flap of my chest.  My second tumor was removed from my ribcage area.   My quarterly scans are in:

 

CT SCAN of Neck--Clean

CT SCAN of Abdomen, Chest, and Pelvis--Clean

Ultrasound of Neck--Clean

MRI of Brain--Clean

 

When initially told I may live a year, pre-surgery, miracles continue to happen.  Don't ever give up.  Don't read all the bad news on the internet.  Everyone's body is different.  I am currently on no meds.  I will continue the fight and I feel for everyone that is going through this horrible disease and experiencing much worse effects. 

 

Ron

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Anonymous's picture
Anonymous
Replies 0

I had a small, new mole on my ear removed via punch biopsy a couple of weeks back.  The biopsy came back as severely atypical - I have requested the pathology report, but have not received it yet.  My understanding is that in addition to being atypical, they did not obtain clear margins on the original biopsy.  My dermatologist referred me to a plastic surgeon for removal of the remaining abnormal cells plus a margin, but my consultation with her is still a couple weeks off and I am driving myself a little crazy with the as yet unanswered questions.

I know that severely atypical does not equal melanoma; that histologically, it's really close, but not quite.  Can anyone point me to the results of research studies on how often severely atypical moles do transform into melanoma?  I know that 5 mm margins are generally recommended for severely atypical lesions, but I am concerned about how much of my ear that is.  It seems like an aggressive treatment, and I am trying to understand what the treatment is backed up by.

I am also wondering if anyone can give me an idea of what to expect for the surgery.  The mole was on the scapha/antihelix of my ear, so it's kind of a complex area to work in for the reexcision.  Since my dermatologist referred me to a plastic surgeon, I am assuming they expect to perform some level of reconstruction on the site - does anyone know what reconstruction options I'm likely to be presented with?  Is it likely they will need to perform a skin graft?  What sort of recovery time is typical for this type of surgery?

Thank you.

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LindyVA's picture
Replies 15
Last reply 1/16/2013 - 6:28pm

My husband (stage four mel) started Yervoy Dec 1 2012...4 infusions and he did well, only fevers, bad rash and fatigue. The Ong told us he was a melanoma expert only to find out my husband was the melanoma patient and the only Yervoy patient. I watched the test using all the tips I learned on this wonderfully, informative resource...melanoma.org.  I knew he was responding by the numbers. But the Ong said ACL's have nothing to do this whether the drug was working or not.   After # 4 the PET/CT showed tumor reduction in lungs, adrenal, heart(this was almost as large as heart)  and brain.(Brain MRI) He has had gamma knife 3 times.

I asked the Ong about maintainence. He told me there was not such thing. I produced several pages of comments on maintaince every 12 weeks. So he agreed and did one maintainence and said that since my husband was too tired to play golf he should have no more Yervoy. Well, it was Aug and 103 degrees in Virginia, but a new CT scan said everything was OK. I really felt we needed to continue maintainence until the end of the year, but the family was ecsatic over the good reports so I remained possitive.

Well, 2 days before Christmas Ong informs us he has "hot spot" on adrenda glandl. I said he had met on adrendal 13 months ago before yervoy...could it be the Yervoy lighting it up? He said absolutely not. I asked if we could do some more maintainence and Ong said only if he survives the surgery then we will talk about it. But he would have to due re-introduction because maintainence would no longer be viable. I would think as a good Yervoy responder, that there would be other options than going directly to surgery.

He says we need to see surgeon asap and hear about this cool new robot they would use for the surgery. Surgeon says my husband not good candidate for surgery do to heart conditions, but he survived last 4 melanoma surgeries so let's go ahead and schedule surgery asap and hope the second adrenal functions for both. I mentioned to the surgeon it could be the Yervoy... and he says he never heard of Yervoy, but it has stopped working by now (12 months after first yervoy treatment) so surgery is the only thing to do

I have been researching and found posts stating they can not tell if "hot spot" is active met or active yervoy attacking the met. I am so confused and scared. I can not tell our 6 children, their spouces and our 11 grandchildren we are on the rollercoaster again.

There are so many of you that are very knowledgeable of yervoy and I used your knowledge to get him this far. Thank you.

Questions? Can it be Yervoy and not the met lighting up and is there any way to tell if it is a new or the same mass? 

Can we ask for another reading of the PET/CT scan to try and clarify what is lighting up?

 Must yervoy be totally re-introduced or can we re-start maintainece. 

How do we find a second opinion when we do not have a melonoma specialist in our city (Richmond, VA)

Am I wrong to question these professionals and to postpone this surgery until we have more information.

Thank you for your time and attention to my concerns and for any suggestions you my have.

Linda

 

             

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My father, age 76, was diagnosed with stage IV melanoma in November after having a 3.5-cm tumor removed from his skull bone.  They could not find a primary, and his PET scan otherwise looks clear (no evidence of disease).  He also had a brain MRI and CT scans.  The doctors say they don't know whether the next tumors will show up in two months or five years, but they will show up.  He is about to start a two-week course of radiation at the tumor site and was given two options for further treatment: 1) observation (wait-and-see) and 2) clinical trial of 10 mg/kg ipi, 3 mg/kg ipi, or interferon.  He has Kaiser in the Bay Area, and we like his oncologist, but she is not a melanoma specialist.  Apparently there are no melanoma specialists in Kaiser Northern California, and she will not refer outside this region.  Here come my questions:

Is it worth seeing a melanoma specialist to discuss his treatment options?  He isn't sure whether trying to get into the clinical trial is a good idea, since he currently has no observable tumors and he feels fine.  The oncologist didn't seem to have any personal experience with the drug; she said she did not highly encourage it due to the side effects.  I saw from older posts that a lot of people like Drs. Daud and Algazi at UCSF.  We are willing to try them, but does anyone use or recommend any of the specialists at Stanford, which is closer to us?  Any ballpark ideas for a consultation fee for second opinions from UCSF or Stanford?  

Thanks in advance...

 

 

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KRob's picture
Replies 5
Last reply 1/16/2013 - 3:52pm
Replies by: DeniseK, bikerwife, KRob, POW, Anonymous

Hello all!

It's been some time since I have logged on, but I always keep tabs on and prayers for all here who share the bond of melanoma.

I have had the blessed good fortune of being an (almost) 8-year survivor of stage IV, 24 yrs since first being diagnosed in 1989 as stage I. In that time I have learned so much and understood so little, but I do know that there is hope for each and everyone of us.

I cling to that hope now as I face another possible hurdle in the form of a brain lesion. The MRI was possibly in error, but my docs will rescan in 8 wks to see if there is any change.

Does it get any easier? Sometimes.

Is there ever a time when scans aren't stressful? Nope.

Can someone live with melanoma? Absolutely. No one is a statistic; there is always hope!

My best to all,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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karebear1905's picture
Replies 11
Last reply 1/16/2013 - 3:24pm

Hi! I would like to introduce my self. I was diagnosis with superficial spreading melanoma stage 3b in April 2012. After snb and wide excision along with lymphorectory in my groin, I have been NED since. For treatment, I decided to participate in the ipi trial offered for 10mg. I finished the infusion phase and have moved forward to the maintainance phase beginning the 24th of this month.

The biggest thing that I have struggled with since my diagnosis is the psychological effects of not being certain of the future. I constantly find myself viewing the statistics and thinking that I may be a casualty to this disease. I doubt myself and my faith. I am afraid of leaving my two children without a mother. I guess the biggest thing I yearn for is peace of mind. I always get a lot of anxiety especially whenever my 3 month scans come up with the study I am in. Does anyone get as anxious and doubtful as I do?

I know I must live for the moment but some reassures for the future would be nice!

Karen

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lou2's picture
Replies 2
Last reply 1/16/2013 - 10:18am
Replies by: lou2, buffcody

Commentary

Journal of Investigative Dermatology (2013) 133, 292–295; doi:10.1038/jid.2012.386

Melanoma Prognostics and Personalized Therapeutics at a Crossroad

Roger S Lo1,2

  1. 1Department of Medicine, Division of Dermatology, David Geffen School of Medicine, University of California, Jonsson Comprehensive Cancer Center, Los Angeles, California, USA
  2. 2Department of Molecular and Medical Pharmacology, David Geffen School of Medicine, University of California, Jonsson Comprehensive Cancer Center, Los Angeles, California, USA

Correspondence: Roger S. Lo, Department of Medicine, Division of Dermatology, David Geffen School of Medicine, University of California, Jonsson Comprehensive Cancer Center, 10833 Le Conte Avenue, Los Angeles, California 90095-1750, USA. E-mail: rlo@mednet.ucla.edu

Abstract

Melanoma has recently emerged as a poster child for targeted therapies and immunotherapies, with game-changing BRAF and immune checkpoint inhibitors now in clinical trials and with approved clinical indications. One highly anticipated use of novel therapeutic agents is in the adjuvant setting. Adjuvant BRAF and/or immune checkpoint inhibition may positively affect the survival of melanoma patients diagnosed at earlier stages but still at high risk for postsurgical relapses. BRAF V600 mutations and, potentially, melanoma-associated immunity are predictive biomarkers for responses to these novel therapies. Emerging evidence points to these predictive biomarkers doubling as prognostic biomarkers for high-risk stage III patients, promising to help stratify these patients for the application of novel adjuvant therapies.

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Brendan's picture
Replies 0

Hi Everyone,

I signed up in September to thank Brenda (Brenda-you and Kevin continue to inspire me and others!), but this is my first post about myself.

I have been stage IV since Sep 2011 (more details on my profile). I had a craniotomy in November to remove a brain met and just received the good news that I am still NED...MRI and CT came back clean.

I have visited this site often and would like to thank everyone for their contibutions and honesty. I always say to myself, "We are fighting cancer-it's not supposed to be easy," and this website often helps in the fight.

To the people out there who are new here I would like to offer some unsolicited advice that has helped me:
1-Go to an oncologist who specializes in melanoma.
2-Go to an oncologist who specializes in melanoma.
3-Reread 1 and 2.
4-Be careful with this website. I have learned to use it for inspiration. It has helped me through some tough days, but some days the scary stories make things worse (just my opinion-I realize we are all doing what we can and the scary stories are inevitable).
5-Check out the posts of CharlieS. His story (and his grin!!) will make you smile.

Good luck and God bless.
Brendan

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