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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DZnDef's picture
Replies 16
Last reply 4/11/2014 - 10:35pm
Replies by: kylez, DZnDef, Anonymous, tcell, Janner, Carole K

Has anyone on this board chosen the Alternative Treatment path with any success?  I was just diagnosed Stage IV (mets in lung) unknown primary.  I'd like to look into ALL treatment option including both traditional and alternative.  Just wondering if anyone on this board had tried something they'd recommend.

Thanks,

Maggie

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/11/2014 - 5:38pm
Replies by: DZnDef, Anonymous, arthurjedi007

Hi all,

I have been diagnosed Stage IV melanoma, unknown primary (melanoma found in my lung).  Does anyone have a recommendation for a good "melanoma speicalist" in my area?  I live in Orange County, California (that's Southern California).  I am willing to travel if necessary, but given all the sunshine here, I would expect we would be crawling with melanoma specialists locally, no?

I asked my Thoracic Surgeon for a recommendation to a melanoma specialist and he referred me to Dr. Jakowatz of UCI Medical.  He is a surgical oncologist.  Is that the right "type" for me to see?  I have my first meeting with him tomorrow (Wednesday) but I have heard mixed reviews about him so I may want to keep looking.

Everyone on this board seems to stress the importance of finding a good "melanoma specialist".  I'm all ears for recommendations.

Thanks,

Maggie

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/16/2014 - 4:21am

Hi All

I was just looking for some guidance and advice really so my story:

Notice a mole on my breast which started out like a pin head over space of 6 months had grown had ABCD features so went to GP.

First GP wasnt sure so went back to see GP who specialises in dermatolgy Christmas eve during the appointment he mentioned it looked like Melanoma there was a superimposed speckling of melanin on a network of blood vessels and I would need to see a specialist. 

I went in January to see specialist who looked at in a reviewed it and confirmed he wasnt overly concerned it looked in the normal range and said would review in 3 months but didnt think there was an issue.

Went to follow up last week to be told its grown and he walked me to book me in for surgey next tuesday cause of the way the appointment went with him taking me to book me I didnt have time to think or ask any questions.

I had been suffering from headaches and got a rash in same area but didnt get chance to talk to him about or even mention it not sure do I wait till surgery or should I try and make contact.

At the surgery I dont know what to expect at all what do I need to wear? am I safe to drive? he is doing a shave on one on my neck as well. How long will I be in the appointment for? Am I ok to eat before hand?

I am staying positive at the moment at the moment as nothing has been confirmed but feels like a real rollercoaster of emotions christmas was so worried then in new year for three months no problem now back to worried.

Any advice or tips to try and keep it together would be much appreciated,

 

Ruth 26

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/10/2014 - 10:16pm
Replies by: Anonymous, hdevlin, NYKaren, melissa ann, arthurjedi007

I'm wondering if anyone has had any experience with severe itching after IL-2 treatment. It has been almost six weeks and my dad is not getting any relief.  Nothing has helped so far (gabepentin, Benedryl, cold compresses, etc...), it's maddening. Any suggestions?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/8/2014 - 9:01am
Replies by: Anonymous, Phil S

Can anyone answer this for me. I know that mucosal melanoma is rare. How rare is the BRAF wild type mutation?

 

Thanks.

 

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DZnDef's picture
Replies 7
Last reply 4/8/2014 - 5:58pm
Replies by: Anonymous, SoCalDave, DZnDef

Hi all - I was diagnosed with Stage IV Melanoma in the lung unknown primary on 3/11/14.  I was mis-diagnosed in July 2012 with a carcinoid of the lung which was removed 10/31/12 via lobectomy and declared cured.  Several follow-up x-rays were clear until 1/27/14 when two nodules on my left lung were found measuring 13mm and 6mm, respectively.  Lung needle biopsy came back as melanoma.  The 2012 nodule was re-tested and came back as melanoma.  So.... I have been Stage IV Melanoma for almost 2 years with no treatment other than surgical.

I am meeting for the first time with a surgical oncologist this Wednesday (Dr. Jakowatz at UCI Medical).  I expect he will recommend surgical removal of the two newer nodes but I am not sure I want to do that.  Recovery from the last lobectomy was brutal and how much of my lungs can I have removed and still breathe?  Also, since it is malignant, won't more nodules just keep showing up?

Has anyone on this thread taken an Alternative approach to their disease with any success?  Drugs that stimulate the immune system scare me because I am currently deaf due to an over-active immune system. In other words, my immune system is very stupid and attacks healthy cells and ignores cancer cells.  Super-charging it, who knows what it would attack.

Just curious if anyone has pursued Alternative treatment.

Thanks,

Maggie

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joy_'s picture
Replies 3
Last reply 4/7/2014 - 10:47pm
Replies by: NYKaren, POW, BrianP

As some of you may remember, my husband was diagnosed with leptomeningeal disease in early Feb.  After only being given an option of WBR at Emory in ATL, we headed for MDA.  Just wanted to update to say that he has completed the induction period of intrathecal Il2 under Dr. Pappa's care.

He also has disease in body and brain mets so this is an uphill battle all the way, but he is a fighter with a great PMA!  Day before yesterday he had some speech problems, and they did an MRI a few days ahead of schedule.  Brain met near speech center has gotten a little bigger (but he hasn't received any tx for this yet other than starting dabrafenib yesterday.  MRI showed LMD pretty much unchanged which is GOOD!

He will now receive IT iL2 weekly.  Hopefully dabrafenib will help brain & body.  We will get evaluation this week with updated plan, and and still hoping for TILs therapy!

if anyone is interested in how his IL2 treatment went, I will be happy to share.  It was rough on him as far as toxicity goes with confusion and delusions but otherwise well tolerated.

wishing you all the best!

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Replies by: SABKLYN, NYKaren

With all the questions recently being posed regarding anti-PD1 I thought I would try to help answer some of them.  This morning I put together a basic report on anti-PD1...what it is, how you take it, side effects, etc...as well as a synopsis of two of the latest articles providing results of two recent anti-PD1 studies.  A look at 107 melanoma patients in one of the first anti-PD1 studies that treated 306 patients with a variety of cancers by Topalian, Sznol, et al.  And, another by Weber, giving the data on 90 patients in my sister study of unresected melanoma patients at Moffitt.  Hope it helps.  Here's the link:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

chaoticallypreciselifeloveandmelanoma.blogspot.com

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hawaii marcus's picture
Replies 3
Last reply 4/13/2014 - 12:33am
Replies by: Kim K, hawaii marcus, Becky

HI Everyone,

I have been free from my original cancer in my left nasal cavity since April 2013. I have mucosal melanoma and my 1 year anniversary PET scan found regional spreading in my left cervical lymph nodes. Lucky me!

An ultrasound this week showed 3 lumps, the largest being 1.3 CM and the smallest .5 CM.  I am a resident of Hawaii, and love my hospital, The Queen's Medical Center. But they suggested I follow up with my contacts from UCLA.

Unfortunately Hawaii only has 2 Head and Neck Oncology surgeons. I chose a 2nd opinion last year for my lateral rhinotomy, and a family member suggested UCLA. I met Dr. Glaspy (Onc) and Dr. Abemayor (H&N Surgeon). Surgery removed any tumor, but they didn't find much after my sinus surgery in Hawaii that found the malignancy. Then Dr. Glaspy suggested Interferon, but said the risks were not worth it for me.

In June I followed up with 30 doses of Radiation at Queen's. And now just following PET scans every 6 months.

 

This new discovery does not scare me, but Dr. Glaspy suggested I look at PD-1. Any one have good experience with PD-1?

I am reading lots of good things online about it. Only quirk is they do not offer PD-1 here in Hawaii, so I may be flying to LA a lot over the next year. Cha-Ching!! Not good on my bank account!

We are ready to kick this Cancer's A$$!!! Wish us luck!!

 

Aloha,

 

Marcus

 

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pgdness's picture
Replies 1
Last reply 4/6/2014 - 7:18pm
Replies by: Janner

Hi all,

I am in the process of awaiting results on a shave biopsy of a suspicious mole.  About a year or year and a half ago I noticed one that looked bigger than I was used to and looked darker too, almost black in spots.  I ignored it cause it still just seemed like a mole - looked round and only about 4mm in diameter.  Finally decided to do something about a few questionable skin areas after having my first baby this January.

When the P.A. did it on tuesday she shaved off two layers.  I looked under the bandaid about an hour later and saw streaks and dots of black still at the biopsy site!  Could this indicate melanoma?  She kept calling it an atypical mole and didn't really acknowledge the possibility of it being mel.  Is there any chance that this is just a deep atypical mole?

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robbier's picture
Replies 6
Last reply 4/7/2014 - 11:44am
Replies by: robbier, Anonymous, Gene_S, LuckyMan51

March 29th, I had my PET scan, and of course the Doctor told me He was concern with two spots.  One on my right side, and one on my lungs.  So I am fixing to do a MRI, appointment with a heart lung Doctor.  My doctor at this point in time, said first they was going to look at the place on my side that he called "HOT".  And they are wanting to do a biopsy on the spot on the lung.  don't know which lung, just know my lung.    He stated He didn't know at this point in time what I am looking at, and depending upon what is found, He might recommend a clinical trial, Interferon, or Yervoy.   I have come this far without drugs.  I don't like the idea of drugs, especially one that could kill you, which I was told that Yervoy could do.  My question is why do doctors want to give you a drug that could kill you, just for data so they could possible help other patients?  I am not a human pig to be tested on.  I refuse to be that pig.  Sorry guys, but that is the way I feel.

 

So, I go april 11, to see the heart-lung doctor, a MRI on Friday, and waiting for the surgeon to call me about that place on my right side.

 

I still have a strong faith and  believe in God, and the fact He is the one that has kept me this far in this walk, and will continue to help me make the right decisions.  Is there anyone out there that has success on a drug?  and if so?  What?   Call me weighing my options.

 

Thank You for any input.  Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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POW's picture
Replies 5
Last reply 4/6/2014 - 5:13am
Replies by: Anonymous, DZnDef

Catherine Poole of the Melanoma International Foundation just announced that the Merck MK3475 (anti-PD1) Expanded Access Program just opened at the Angeles Clinic and Steven O'Day's Hollywood Clinic. Hooray!!

She also said that Amplimmune is accruing patients for their anti-PD1 trial. See NCT02013804- PD1. No prior PD1, but other therapies prior ok

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