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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casagrayson's picture
Replies 5
Last reply 4/9/2014 - 6:43pm

https://www.facebook.com/battlewithbethanycobb

Bethany Rene Cobb, child of the One True King and on loan to us from our Savior is now with her Father in Heaven who came to take her home at 3:15 pm, Tuesday April 8th, 2014. She went peacefully in the arms of Jesus with many loved ones around her.

Strength and Courage,

Susan

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dsfarms13108's picture
Replies 8
Last reply 4/9/2014 - 3:05pm
Replies by: jend33, kylez, Anonymous, dsfarms13108

ive been stage 4 metastatic melanoma for 1-1/2 yrs -first on zelboraf for 6 months then when it decided to stop working -went to dana farber  in boston to get put on pd1 trial Merck .have been doing quite well on that since july 2013  -all  of a sudden started getting headaches -went for mri  found two brain mets -currently am waiting for the drs at dana farber and merck to hash it out and see if they will let me stay on trial ....praying alot that they will ,as this is my best hope

my question is has anyone had these and what did they do about them ? i have been told locally that they could do cyberknife but boston says srs  and then they were talking about surgery on the frontal lobe lesion and radiation for the one in cerebellum .i need to hear something positive so i can make an informed choice and not just go blindly along . thanks for any in put  -this is freaking me out a little although i try to stay positive ..thank you

 

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holdthresh's picture
Replies 3
Last reply 4/9/2014 - 2:45pm
Replies by: Anonymous

Does anyone know of melanoma support groups in Chicago or Chicagoland?

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Here is a link that you can look up your doctor(s) to see how much Medicare paid.

 

http://projects.wsj.com/medicarebilling/

 

 

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I know what a horrible battle you all fight. It gave me so much strength when I would come here and read your stories. This board kept me from losing my mind while my husband battled a Stage 3C and then Stage 4 agressive Nodular Melanoma diagnosis and treatment. I was a 39 year old mom with two little daughters when this entered our lives.

There is hope. And there were always people who came back here and posted to give others hope. After diagnosis, 3 surgeries that included a massive facial skin graft and over 70 lymph nodes removed, radiation, a year of interferon and many years of monitoring and scans my husband is still alive. I now say he is "living with cancer"

It was scary to log in and see these postings again, and I often wonder if posting this is asking for trouble from the evil cancer demons. 

It is my deepest hope that you get through this too, and live....no thrive....after this nightmare. 

Much love and appreciation for all that post here. You saved me in my darkest hours. I hope I can give you a thread of hope this evening.

 

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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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jahendry12's picture
Replies 2
Last reply 4/8/2014 - 5:25pm
Replies by: POW, arthurjedi007

Haven't seen Jerry post in a while.  Hope you are doing well Jerry!

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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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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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KristaS's picture
Replies 5
Last reply 4/7/2014 - 10:26pm
Replies by: Bubbles, Janner, POW, KristaS, becky15

First and foremost I would like to say how much I am impressed by the upbeat attitude everyone seems to have on here.  So here is my question: about a month ago I was drying off from a shower, looked in the mirror and noticed a mole on my shoulder was flaky.  I rubbed it with the towel, the top layer of skin came off.  When I looked at it closely I realized it looked a little weird( it is smaller than a pencil eraser, has mostly regular borders, doesn't seem to have gotten much bigger than the last time I noticed it; but the inside is brown with scar-like tissue running through it. It is almost perfectly flat).  This mole is under my bra strap, so it has been rubbed a few times, so that could account for the scar-like stuff on the inside.  So I decided to google abnormal moles.  One of the red flags is an itching mole!? This particular mole got red and itched intensely about three years ago for a few days, but it went away on its own, so I didn't think anything of it.  If I had known that was a warning sign I would've taken it much more seriously!  Anyway, I showed my GP, she said it didn't look bad to her but that I should see a dermatologist since I am fair skinned and light haired, just to get a once over and make sure all is well( I'm 28 yrs old, by the way).  Well, I made the appt, but they didn have any until May 27th! So my question is this: should I wait until then? I am pretty freaked out that the itching was a sign of bad things to come and it's just been sitting there all that time, possibly leaking bad cells. I even called another hospital, they didn't have any until June. Has anyone had an itchy mole that wasn't melanoma?

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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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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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