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 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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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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laru's picture
Replies 3
Last reply 4/6/2014 - 1:19pm
Replies by: meg, laru, sweetaugust

Thank you to everyone providing their experiences on this site, it's been amazingly comforting and informative as I help my father combat this disease.

Has anyone had an experience with PD1 drugs where they has not been any progress during the first course of treatment (3 months) but then experienced later tumor reduction?

Thanks for any information you can provide.

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BostonTerrierFan's picture
Replies 5
Last reply 4/6/2014 - 1:14pm

I was recently diagnosed Stage 3, & I underwent lymph node dissection under my left armpit a few days ago. I have had decent drainage into the line & bulb, but also some drainage from the incision site. The surgical strips & dressing are close to saturated. Can anyone tell me if this is normal? Also, how is the removal process? Is it painful?

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Tina D's picture
Replies 19
Last reply 4/6/2014 - 12:24pm
Replies by: meg, Anonymous, dellriol, Tina D, katie1, BrianP, casagrayson, jogo

Anyone have adrenal insufficiency due to treatments and if so, does your Doc give you a "stress dose" option for your prednisone? In times of added demands either physical or emotional . I am having extra fatigue, and am in the midst of some demanding stressors at the moment. Thyroid was also low again, so the dosage adjustment may take care of it, but if not, they told me we can discuss the prednisone next visit. Just wondering what others are doing. Thanks! I have been on 5 mg pred for long time, after pituitary inflammation brought on by ipi last year ( started on 60 and tapered to 5 eventually) I also have a history even prior to the ipi of likely being adrenal insufficient, always requiring Cortisol to keep any BP during and after surgeries.

Thanks!

Tina

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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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Bruce Davis's picture
Replies 2
Last reply 4/6/2014 - 1:05am

Feel so fortunate just being able to get around and have a daily routine. 

My heart goes out to everyone fighting as I know I've had it very easy compaired to most! Been able to make it to work every day only due to the people I worked with being in worse shape than me. They didn't realize how much motovation I received from them as I was supposed to be motivating them to exercise.

About 60 days ago started feeling very fatigued,  With a difficult time writing and thinking. Went on vacation for a week, thought it would help. Never got any better. Ive had to stop working and take it easy for a while.

Just wanted to know if anyone else has had the same reaction?

Presently it's "Don't give up."

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Replies by: kccaddy23, Anonymous, Tim--MRF, Scuba Doc

We are desperate!  My brother has stage IV melanoma and was told there is nothing else they can do for him.  There is a drug (MK-3475) Anti-PD-1 inhibitor that is available for expanded access for compassionate use from Merck.  Since he had a seizure a couple of weeks ago and has new brain tumors they state he is not eligible. I’m hoping someone may know of a way to get an exception to the rule and get my brother access to this drug.  His doctor, Stephen Hodi from Dana Farber said Merck refused to allow him to receive the drug but would not put their refusal in writing.  We were told he only has weeks to live and that was last week so we are desperate for him to get this treatment.  We will sign anything releasing them of any liability if anything happens to him.  Please let me know if you have any suggestions or any other options you think we can try.  We are even open to anything at this point.  Thanks!!

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tcell's picture
Replies 7
Last reply 4/5/2014 - 9:36am
Replies by: BrianP, tcell, pigs_sty

Hi all,

I have been following this forum fo a few weeks now and find it very helpful and encouraging. I really admire people here and the strength they show in fighting melanoma or taking care of their loved ones.

I am 35 years old, husband and father of a daugher of 1 1/2 years and probably one of the few European members (it seems to me) of this forum.

I have had lots of moles and spots on my body all my life and was used to seeing a dermatologist on a regular basis to get all of them checked. Always tried to avoid to much exposure to direct sun, always used factor 50 sunscreen as I was very aware of my high risk

On January 29 of this year I went to our local university hospital's ER after one month of coughing and 2 nights of severe pain in my thorax. The x-ray showed liquid between my lungs and pleura, CT of the thorax showed something on my pleura, lungs and the top of the liver and adrenal glands as far as visible that according to the doc looked like metastasis of a malignant rumor.

I was admitted right away and 2 days later a biopsy was done and a drain put in to get rid of the liquid. The surgeon told me that it was obviously a malignant melanoma irght after the operation.

Long story short: Pathology report and PET scan revealed that I had stage IV melanoma with mets in lungs and liver, adrenal glands, pleura, abdominal membrane, hip bones and vertebra TH 10. Luckily nothing in the brain. Tumor is BRAF positive, C-Kit negative. Primary unkown.

I spent one month in hospital where in the beginning they were not so sure whether I would survive as my blood params were really bad and there were 3 big mets attacking my liver

Luckily they have a research group specialized in melanoma treatment taking part in a number of trials so I have a very competent team of specialists to take care of me.

I am now taking GSK's Tafinlar + Meikinist combo (the latter through the compassionate use program as apporval for Europe is pending). Judging from the rapid imporvement of my blood params they think that I respond really well to the meds. I have had not side effects at all and will pick up work again next week.

I know that this may only work well for a limited period of time but I am trying to focus on the present and to be happy with what I have.

Just here to say hello to verybody and tell you how much I appreciate the discussions in this forum and how much self-confidence they give me to be ready for my own fight! Looking forward to taking part!

// Chris

 

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