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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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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KatB's picture
Replies 0

Hi All,

At our oncologist appointment March 20 we were told that my husband would need Gamma Knife treatment.  (His tumor was resected Feb 28th.)   We met with the radiation oncologist on Monday this week and found out that he would not be able to have the Gamma Knife.   The reason is that the "cavity" where his tumor was is 2" which is too big for Gamma.   They now recommend (5) TrueBeam treatments.  He is scheduled for simulation on Monday and to begin treatments on Wednesday.

I was wondering if anyone here had experience with TrueBeam?  How were the side effects? Was there anything about it you wish you had known ahead of time?  Any info is appreciated.

The good news is that the brain MRI that he had Monday showed no new tumors and no regrowth in the area of the original tumor.  

The MRI did reveal blood pooled in an area on his brain.  It is a concern that if the blood is leftover from the surgery and came from around the tumor that it could be sitting in a new place containing bad cells just waiting to grow.   Any thoughts on this?   I will also say that my husband fell from the bed in ICU less than 48 hours after surgery and hit his head on the side where the surgery was.  He was rushed to a CT scan and no issues were found but I still wonder if this could be what caused the blood.   We forgot to mention this to the radiation oncologist but we will be seeing him again Monday and will discuss it further then.  We are worried about that blood!

 

2008: Dx Stage 2 - 1.24mm, ulcerated, right arm. WLE, SNLB.

2014: Dx brain met - 3.1cm tumor resected 2/28/14.  TrueBeam treatments scheduled in April.

 

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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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Anonymous's picture
Anonymous
Replies 2
Last reply 4/4/2014 - 3:23pm
Replies by: Mat, Bubbles

Hi,

I have been diagnosed with stage IV melanoma with mets on liver / lungs, etc. 8 weeks ago and I am now taking GSK'S combo. The doctor said Ipi was not an option as it is not clear wether I would respond at all and if I did on time to survive. Initial response could take up to 4 months.

Now I am reading that there are patients for whom the combo still works fine after 3 years, for others it stopped working after 5 months. The abarage according to a trial being 10.5 months.

I also understand that after discontinuing the combo about 50% show a rapid progress of their desease, in 50% cancer growth seems to be stopped or very slow.

Now I am kind of worried that I might run into the same problem in a few months again (of course I am praying and hoping for the better outcome) that Ipi may be too slow to help!

I hope they extend compassionate care for PD1 to Europe soon so I have a chance.

Does any of you have any other ideas what could be possible options after BRAF / MEK? I also heard that there are trials of PD1 and / or Ipi together with BRAF / MEK or discontinuing BRAF / MEK rather during a time when it works well and switching to other drugs instead of waiting until the melanoma is already spreading again.

Does any of you have experience with such a situation and knows of any soutions? Is IL-2 still an option?

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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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