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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Nick C's picture
Replies 16
Last reply 2/7/2017 - 8:37am

Just wondering...has anyone tried holistic/naturalistic approach in addition to their drug therapy, i.e, supplements, juicing, coffee enamas, detox, essential oils, etc? If so, which ones?


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Hello everyone,

To provide some background, I've had this for a few years now and never really considered it to be anything serious. That was until my wife happened to see a Facebook post today that said it could be some sort of melanoma. The site of the black band doesnt hurt, and I can't really tell if its the nail that is black or something beneath it. However, it has never disappeared and I feel it has widened over time (not sure if this is an effect of growing up physically). The portion of the skin preceding the nail is also slightly darker than the other half which the band does not cover. The only reason I can think of which may have caused it was a wood splinter that accidentally entered the area, it was removed though. This was in my early 20′s I guess or maybe before that, I dont really remember. I'm 29 now and fairly healthy. Should I be concerned/get it checked?

Actual picture can be seen here:

http://imgur.com/a/ezn2v

Any help & guidance in this regard is much appreciated.

 

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Dreaf01's picture
Replies 11
Last reply 2/6/2017 - 10:28pm
Replies by: Dreaf01, Nemesis, Anonymous, Sophietx, keepthefaith11, ToddG, Janner

Hi all, I was just diagnosed with Melanoma after a birthmark on my right outter thigh started changing colors during my recent pregnancy. I am so upset with myself for waiting, my OB just did not seem to concerned about it while I was in the hospital. Anyways fast forward, my son is now 7 months old and I cannot bear the thought of leaving him. I went to the dermatologist on 11/3-/16 and on 12/14/2016 I was told that I have Melanoma. I then went to a surgical oncologist to schedule a WLE and lymph node Bx for the 29th of this month. Since my diagnosis I have truly been FREAKING out. I have had dull chest pains that seem to bounce all over (Im hoping its anxiety) and have caught this cough that is going around. I havent been eating much and have a heard time sleeping at night. I have been a google freak and I am sure you all know that it does not help the anxiety at all. The surgical Oncologist says that right now I am a stage 2, until we get the path report back from the lymph node bx. Can you all interpret my pathology report and based on your knowledge tell me what you think?

Malignant Melanoma without Ulceration

Clark Level IV

Breslow Thickness: 1.5mm

Mitotic Rate: 4/mm2

Histopathologic type: Unclassifiable

Radial Growth Phase: The presence of Radial Growth Phase cannot be assessed as the in situ and invasive components of the tumor are present at the peripheral margin

Vertical Growth Phase: Present

Tumor cell Morphology: Epithelioid

Regression: Absent

Tumor Infiltration Lymphocytes: Non-Brisk

Microscopic Satellites: Absent

NeuroTropism: Absent

A microscopic focus suspicious for angiolymphatic invasion noted.

Any thoughts would be appreciated.

 

Thanks

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Bmine102793's picture
Replies 2
Last reply 2/6/2017 - 10:22pm
Replies by: UBContributor, Anonymous

So mri showed small calcification on feontal lobe of brain but report said it may have nothing to do with melanoma and not to worry but shouldnt they atleazt biopsy it to be shure?

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CindyCo's picture
Replies 1
Last reply 2/6/2017 - 10:17pm
Replies by: Bubbles

Apparently these don't respond to PD1?  Hoping that something is in the pipeline for people with those mutations.  My mom starts Keytruda on Wednesday and we have no idea what her JAK status is.

http://newsroom.ucla.edu/releases/ucla-researchers-discover-why-some-can...

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/6/2017 - 4:36pm
Replies by: Anonymous, iskitwo, casagrayson

I had melanoma on my foot a year and a half ago.  It was stage II, surgically removed, none in the lymph nodes so I've been Ned since then.  Recently I've noticed a small lump and some pain at the site of the surgery.  Should I be worried?  Can melanoma return at the original site? I know that it typically travels to the lymph nodes, in my case the groin, or to other organs but I've never seen anything about it cropping up at the site of origin.

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I'm newly diagnosed Stage 4 Melanoma as of mid January '17. I'm interested to hear how folks have navigated their way through treatment options that are a trade off between toxicity risk and higher outsomes versus less toxicity and good but not as high of an outcome. Other than melanoma, I'm in really good health, the tumors are in my lungs and haven't traveled yet. 

See below for the options. Really appreciate the advice. 

Recommended Approach 1 - Combination treatment
Drug 1 - Yervoy (same as Ipilimumab)

Drug 2 - Opdivo (same as Nivolumba)

% Toxicity (55%)
Mortality           1%
Severe              10% 
Other                 40%

Response Rate
57%

Combination Treatment Abstract - Yervoy and Opdivo

http://investor.bms.com/investors/news-and-events/press-releases/press-r...

Recommended Approach 2 

Drug 1 - Keytruda (Pembrolizumab)

% Toxicity
Mortality           1%
Severe              10% 

Response Rate Alone
40%

Drug 2 - clinical trial (phase 3 with placebo for 50% of group)

Response Rate with trial ~ 50%.

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I wish I could continue to fight for you all, I will find some way to give all of my energy to push research and find a cure to help................thank you.  This is hard right now, but I'll find a way.

Rita

Rita

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Rita and Charles's picture
Replies 33
Last reply 2/5/2017 - 9:32pm

My husband Charles died yesterday morning, I was thinking he was having a bit more sleep it is hard to get to doctor's appointments.  I hate this disease, please say a prayer he is in a happier pain free place.

 

Rita

Rita

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I didn't get a chance to mention in the post after Dads last Dr. visit, some of her recommendations. First of all the doctor that Dad is primarily seeing is Dr. Freeman, she is not an MD but a DO.  I have done the research and found out that they are basically the same as an MD (Same amount of med school), but they have extra schooling for a "whole body approach" combining western medicine with osteopathic medicine,  including manipulation of the bones etc.  Dr. Freeman doesn't do any type of adjustments (in fact she recommends NO chiropractic "cracking of the bones" for cancer patients), but she certainly has taken the whole body approach, which we absolutely LOVE. We really appreciate that she has literally checked Dad for a lot  of different things (ie: fungus) and we have been able to "rule out" many things.  Overall, Dad is in excellent health (aside of Melanoma).  I think this will definitely be to his advantage in the future.  I asked Dr. Freeman of all of the supplements out there what she thought to be the most important, because there are literally thousands of things you can take and everyone has a recommendation.  The two things she said that were important were: Turmeric & Probiotics.  I found this interesting, I knew the probiotics would be beneficial to help prevent side effects, but have heard a lot about turmeric, but never really did much research.  She said that there have been studies that have shown using Turmeric while on Immunotherapy can help it to work better (I can't remember her exact wording). So of course Dad is now taking it via supplement daily.

I think it is important for all people going through cancer to really find out what else is going on in there body.  These are just my thoughts and by no means do I think there is a right or wrong way to do things.  What works for one doesn't for another.  

Best. Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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jahendry12's picture
Replies 6
Last reply 2/5/2017 - 5:45pm

Hello - I have 2 questions I wanted to pose to the group regarding the TAF/MEK combo.

 

1)  Has anyone NEVER had a fever but still responded?

2)  For those that did have fevers, how long did it take for them to start?

 

Thanks for any input you can provide.  Much appreciated!

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Hi, I am new to this forum and was recently diagnosed with stage IIIc Melanoma in December 2016. I was just wondering if anyone has any reviews of Yervoy/ipilimumab as adjuvant treatment to help prevent reoccurance? This is what is being offered to me as a treatment option and just want to hear from some real people instead of just what you read online in statisitics and press releases. Below is my Melanoma story to date and would love to also hear form people in similar situations and stage. 

In spring 2015 when I was 35 years old, I had a melanoma in situ removed from my left upper back. Now in December of 2016 I was diagnosed with metastatic melanoma in left axillary lymph nodes. I had MRI, PET/CT and all they could find was the one left axillary lymph node area with cancer (4 matted nodes). No other primary tumor. It seems like this has made staging difficult. I underwent lymph node disection about 3 weeks ago and am healing up fine. I've been having doctors tell me about spontaneous regression and they think this may be what happened to my primary tumor. Or it could have even regressed before 2015 when I had the original removed making it appear to be in situ by the time it was removed. All theories, but even my dermatologist suggested the same yesterday when I was there for followup. 

Please, I would love to hear from others who may have been told similar or who have used Ipilimumab and hear your experience with the drug.

Thank you in advance for your comments!

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Patrisa's picture
Replies 8
Last reply 2/5/2017 - 11:23am
Replies by: Bubbles, Patrisa, Anonymous

Dear friends,

guess it's our time to worry some more...

A year after starting keytruda, my father has had another pet/ct done... His known tumors are COMPLETELY gone, no uptake, but the report says a suspicious change in one of his ribs... No further info on that... My father was in good spirits when he came from the doctor, said everything was ok, the doctor was already familiar with pet/ct results,  he continued with keytruda, so i was shocked when i read the report which came in today...

Does that mean he progressed or can it be other stuff? He hasn't had any trauma to his rib cage, what else (benign) could it be?

Can keytruda work through the 'new' stuff, or will he have to switch to something else?

There seems to be no plan of action to really see what is going on, they plan on waiting for another scan in three months i guess... 

Should we push for something sooner? What would that be? Biopsy? Radiation?

Thank you so much for any info...

Take care everybody...

Love,

Patrisa

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John Bruno 2613's picture
Replies 2
Last reply 2/5/2017 - 10:36am
Replies by: Anonymous

Hello my brother recently had malignant melanoma with a level 1 surgery. He is doing well, but had to get another mole removed this mole came back as a junctional lentiginous nevous, however, it extends to one peripheral edge of the specimen. My question is should he have it re-excised to clear all the margins even though it is benign? What are your guys opinions and experiences. Thanks!  

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Julie in SoCal's picture
Replies 7
Last reply 2/5/2017 - 5:49am

Good morning Friends!!

It's been awhile since I've posted.  It's been a long couple of months.

I have just finished the Hep C meds and after blood tests, should be considered "cured" of Hep C (isn't that amazing!?!). While on the Hep C meds though, my joints and bones increasingly ached and became swollen.  The Liver Doc I was seeing for the Hep C had never seen anything like this.  But we (me, liver doc and Rock Star Mel Doc) figure somehow the Hep C treatment triggered an inflammatory arthritis.  The plan was to continue the Hep C meds and the treat the inflammatory arthritis with NSAIDs and pain killers.  Unfortunately, I'm now essentially handicapped as I can barely walk or sit or stand without a great deal of pain.  If one joint doesn't hurt another does.  I am the tin woman in the morning.

So on Monday, I'll make a pilgrimage up to Santa Monica see the Rock Star to talk about what's next.  I still have a stable and small lung met, and another intransit has popped up, so Mel is still alive and well (albeit small and slow).

My original plan was to join a clinical trial for folks who have progressed while on Ipi / Pembro.  I figured that this was my best shot of kicking Mel completely to the curb. But with being handicapped by the inflammatory arthritis,  I'm not feeling like I have the margin anymore.  So I'm thinking VATS to remove the stable lung met and WLE to remove the intransit.  This will render me NED (and therefore ineligible for a clinical trial) but should give me more options to address my knees, hips, back and shoulders with steroids or ???

I've never been wild about getting into a knife fight with Mel, but...  What do you think?

Grateful for this community!

Shalom!

 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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