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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mama1960's picture
Replies 6
Last reply 1/20/2013 - 3:29am
Replies by: JerryfromFauq, Tina D, mama1960, lou2, Anonymous

I have never been that person who goes to the doctor for checkups, but with all the Melanoma mess I decided to do the right thing. I had a blood test to check all the usual suspects, cholesterol etc. They are way out of the ball park and I am going to work on that. However, he also tested a couple of things I never heard of. They have to with inflammation and the possibility of heart disease. They are hs-CRP and Fibrinogen. The results are off the charts. High for the first one 2.9 and mine was 32.2. For the second one high is 464 amd mine is 658. He says this show a really large amount of inflammation somewhere in my body. Said it could be a result of cancer or the surgery, but there is no way to know for sure. Anyone out there familiar with this?

It is what it is.

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awillett1991's picture
Replies 27
Last reply 1/20/2013 - 8:58pm

Scans came back showing nothing new, and nothing grew!! I continue to have thyroid lighting up incl some lymphatic tissue and swelling however TSH and Free T4 are back to normal, probably from steroids. It was biopsied 3 yrs ago, did a full endocrinology workup in Oct/Nov 12 and my doc remains unconcerned - says its Ipi induced. My 4mm brain met is now "tiny", the other went from 6 or 7 mm, depending on which report you read, to 5x3. Also there was no edema, and rad onc said I had it in my spinal cord due to "questionable leptomenengial enhancement over left frontal convexity". He discussed WBR, but we went SRS instead. Now this area is "less prominent". Scary.

The mass inside my heart had really taken off when I stopped Zel - from 7x11 mm on Sept 29 to 28x41x41mm with decreased heart function in 47 days off Zel. Now function is near normal with mass reduced to 19x30x34.

I have been back on Zel 63 days, actually taking the drug 48 of those days after a 48 day break to start Ipi. Unfortunately there is no way to ever tell if the Ipi worked according to my Dr because of me taking the Zel. Something is working though and for that we are very, very, grateful!!!

I created a Zel timeline w pie charts for my doc to see how much drug I'd taken, and the breaks I'd had. I've started an intermittent schedule of two weeks on/one week off to try to reduce side effects and get me off prednisone. And maybe it will prolong the response. I've been on pred since dec 14 when I was hospitalized for liver toxicity. ALP was 6x normal. Right now ALP is fine, but AST, ALT and Bili are all up and climbing so this is my one week off. Hopefully what held true in those poor little melanoma mice will work for us too. Squeak squeak.

Zel side effects still suck. Period. But I have a lot more energy, overall I feel great, and I'm alive!!!

I'm so thankful for everyone here, their positive stories and encouragement, and we are thanking God for this good news after a rough and scary few months. I have no regrets. Many prayers for continued good news for us all.

Amy

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Leigh's picture
Replies 33
Last reply 10/25/2016 - 6:48am

Hi there,

I know this has been mentioned before but it seems most of the threads end up with different conclusions depending on who is responding so I thought I would ask again.  There seems to be a huge gap between different doctors recommendations which is very scary when facing a disease like melanoma.  I would really appreciate it if you might comment on advice you have been given and what stage you were/age at the time.  Also if you did fall pregnant what the outcome was (although I know that is just anecdotal evidence at the end of the day it is encouraging to hear).

It feels selfish to write about this here when so many people are struggling so much with this disease, but the prospect of worsening your prognosis with pregnancy is frightening.  Made more so by the disparity in opinions within the medical fraternity.  I'm not sure if this is clinical bias, or perhaps lack of up to date knowledge that drives this.  From my reading, Marcia Driscoll's most recent 2010 review of the data suggests no correlation between pregnancy and melanoma/hormone use such as oral contraceptives/HRT and melanoma etc.  I am reassured when I read the article but I know some researchers get a bee in their bonnet about things and perhaps she is in the group favouring pregnancy. I recall lots of comments on this website, some women who have died following pregnancy with young children left behind.  I'm not sure of their stage when they fell pregnant but I know some have been convinced progression of their disease was related to pregnancy/IVF.

My situation is that I am 37 and have two beautiful children.  I do not want to leave them without a mother and would not want to take a risk with that.  Similarly I do not want to not get pregnant if there is no real increased risk of recurrence as per this article and some advice I have received.  We have wanted a large family of 4 children and time is running out for that dream so it is decision time.  2 years ago I had a Stage 1 melanoma removed which grew during pregnancy.  It was Stage 1, no ulc, <1 mitosis, 0.83mm, Clarkes IV, neg SLNB.  I saw three doctors before it was removed and only then because it was "bothering me", it was itchy. 

I have consulted various people - two dermatologists told me with the latest literature "no worries", dont "not get pregnant" because of the melanoma.  A surgeon (melanoma specialist) vaguely said, well if you wait 2 years you should be right.  More recently a Prof of Surg (melanoma specialist) has  said that if I fell pregnant, and if I were to recur, pregnancy would bring this forward.  (this was not borne out by my reading of Marcia Driscoll's review). 

This is very rambly and if you have managed to get this far you must be interested in pregnancy and melanoma.  I would really appreciate it if you would share the advice you have been given along with your age and stage of disease to see if there is any real consensus.  I am not sure if this truly does remain controversial or if it truly is reasonable just to go ahead with no real increase in risk (as per my reading of Marcia Driscolls review).

 

Melanoma tends to bring out the anxiety in me and I feel flustered just writing this and trying to get my thoughts together on the topic.  Hope this makes sense to you and thank you for reading.

 

 

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Sorry I posted twice by mistake

 

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Rocco's picture
Replies 3
Last reply 1/19/2013 - 9:08pm
Replies by: Jim M., Anonymous, awillett1991

Just got scanned yesterday with results today.  Appears there may (or may not) be inflamation around my thyroid.  Any MDX/Ipi/Yervoy survivors that now have thyroid issues?  I finished my MDX/Ipi trial in Feb 2009.

Thanks for any replies.

Rocco, IV since 2005, NED since 2009 thanks to Ipi

Luke 1:37

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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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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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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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DeniseK's picture
Replies 5
Last reply 1/30/2013 - 11:16am
Replies by: Anonymous, DeniseK, bikerwife

Hello Again,
Just found out some very helpful information.
First if all the American Cancer Society offers some great programs for assistance. Wigs, support groups, mileage reimbursements for anything to do with your cancer, and lodging. The number I have to call is for Calif but she said they help nationwide 1-800-395-look.
Also there's the Lazarex Cancer Foundation that helps stage IV patients in clinical trials with lodging, gas, airfare, etc. This is great for those of us who need to travel for trials. You wouldn't be limited to what trials you could do. I don't know all the details but their website is Lazarex.org and their number is 877-866-9523. Hope this can help someone.
Denise

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

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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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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 8
Last reply 1/19/2013 - 7:27pm
Replies by: Tina D, NYKaren, JakeinNY, DeniseK, Randy437, Swanee, aldakota22, Anonymous

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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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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lou2's picture
Replies 6
Last reply 3/3/2013 - 12:20am

Durable Cancer Regression Off-Treatment and Effective Reinduction Therapy With an Anti-PD-1 Antibody
Clin Cancer Res. 2012 Nov 20;[Epub Ahead of Print], EJ Lipson, WH Sharfman, CG Drake, et al

TAKE-HOME MESSAGE

Patients with treatment-refractory solid tumors who responded to the anti–programmed death-1 (PD-1) antibody BMS-936558 had remarkably durable remissions, including continued tumor regression off therapy and, in a melanoma patient, successful reinduction therapy after delayed progression.

Immunotherapy as a treatment for cancer is one of the oldest systemic modalities, well predating chemotherapy. Our previous rudimentary understanding of the complex immune system, which can either tolerate or reject tumor cells based on a host of conditions, has limited the practical application of immune-based therapy to a few specific examples. This situation is now rapidly changing. Critical immune pathways, such as the programmed death receptor (PD-1) and ligand (PD-1L) interaction, can be manipulated to broadly treat a variety of cancers. A PD-1 antibody has generated great excitement by demonstrating in the clinic that modulation of this pathway can reduce cancer immunosuppression and lead to clinical responses.

We are still at the very beginning of understanding how best to utilize immunotherapy. As the current study in Clinical Cancer Research demonstrates, treatment with anti-PD-1 antibody can lead to prolonged, unmaintained remissions, which are very different than the response to chemotherapy or other biologicals. Moreover, retreatment with the antibody in progressors can be associated with a second prolonged response, suggesting that intrinsic resistance does not develop in all patients after initial pathway alteration. These exciting results remind us that a tremendous amount of clinical research will be required to optimize immunotherapy added to the other aspects of our armamentarium of cancer therapeutics.

SUMMARY
OncologySTAT Editorial Team

The programmed death-1 (PD-1) pathway plays an important role in the down-modulation of anti-tumor immunity. Immune checkpoint blockade with anti-PD-1 therapy has the potential to reverse cancer immunosuppression and “reset” the equilibrium between tumor and the host immune system.

In the first-in-human phase I trial of the anti-PD-1 antibody BMS-936558, 3 of 39 patients with treatment-refractory solid tumors had an objective response to an intermittent dosing regimen. Lipson et al report long-term follow-up of these three patients.

A man with metastatic colorectal cancer had received multiple chemotherapy regimens with only temporary responses. In the current trial, the patient had a partial response to a single dose of anti-PD-1 and received five doses over the next 9 months. He ultimately achieved a complete response (CR), which is ongoing at 3 years off therapy.

Immunohistochemical studies of archived tissue from the patient’s primary tumor 4 years before anti-PD-1 therapy showed cell surface expression of PD-L1 (a PD-1 ligand) by infiltrating macrophages and lymphocytes and by rare tumor cells. This suggests a correlation between tumor cell surface PD-L1 expression and the likelihood of response to anti-PD-1 therapy, but further study is required.

The second patient, with metastatic clear cell renal carcinoma, had disease progression despite numerous systemic therapies. In the current study, the patient had a mixed response to a single dose of anti-PD-1: pulmonary, lymph node, and intramuscular metastases were regressing, but lesions in the pancreas and bone were growing. After two more doses, the patient achieved a partial response (PR). The pancreatic lesion had disappeared and the bone metastasis was slowly resolving. A year later a brain lesion was removed, but showed no evidence of tumor, consistent with a resolved lesion. The metastatic lesions continued to regress off therapy, and 2 years later, a CR was documented. The patient remains in CR more than 4 years after discontinuing anti-PD-1 therapy.

The third patient had metastatic melanoma that progressed despite therapy. In 8 weeks after a single dose of anti-PD-1, the patient had a mixed response, with some lesions regressing and others growing. Two more doses given over the next year also produced a mixed response. After another year of anti-PD-1 therapy, a PR was documented, and therapy was discontinued.

When the melanoma again progressed, biopsy showed intense surface tumor cell expression of PD-L1. The protocol was modified to allow this patient to receive reinduction therapy with anti-PD-1. After two doses, she had a new PR. She continues to receive anti-PD-1 and remains in PR 16 months after reinduction. The successful repeat application of PD-1 blockade in this patient suggests a potential role for “maintenance” immunotherapy, with anti-PD-1 given on an intermittent schedule after an initial response.

The mixed responses seen in the patients with renal cell cancer and melanoma highlight the importance of developing new immune-related RECIST criteria to assess the often unconventional response patterns seen with immune checkpoint blockade.

Recently reported results of a larger phase I trial using biweekly anti-PD-1 showed durable responses in non–small cell lung cancer, melanoma, and renal cell cancer with 1 year or more of follow-up. This trial may help form the basis of future studies combining immunotherapy approaches for synergistic effect.

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