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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Joe.Pro's picture
Replies 10
Last reply 4/6/2015 - 2:09pm

So...today my life changed.  My biopsy came back positive for malignant melanoma and I'm undoubtedly quite scared based on a few factors.

Here are my details:

34 year old white male diagnosed today with AML.  4.26mm Breslow and IV Clark scale according to the pathology report I received from my podiatrist as the lesion is located on the bottom of my foot.  I know this lesion has been present for 18 months but I foolishly ignored it.  

I am preparing for my visit next week to Dana Farber Institute in Boston and am curious what questions I should be asking...are there better places to look for treatment based on results?

I'm obviously brand new to this disease and it's very scary as I'm sure all of you know.  

Please help...

joe

 

 

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Hi all,

We're in the early stages of planning a Twitter chat about immunotherapy and its use in treating melanoma. We will be partnering with another cancer research/advocacy group and an oncologist who specializes in immunotherapy. What questions can we answer? What do you think would be the most helpful information for people with melanoma to know about immunotherapy? We value your input so please let us know! You can leave suggestions in the comments or email me at LSmithDyer@melanoma.org. THANK YOU!

Lauren - MRF

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Chantel's picture
Replies 2
Last reply 4/7/2015 - 11:43pm
Replies by: arthurjedi007, Anonymous

My father was just diagnosed with recal spindle cell melanoma stage 2. He is undergoing surgery in one week - colectomy and removal of rectum with a stoma and bag placement (colostomy). From what I have read even with Surgey this is a bad tumor.

Are there any other treatments he should be seeking after surgery- chemo, radiation, immunotherapy or gene therapy available? Any advice on this tumor, treatment and prognosis is appreciated

thank you. 

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Ginger8888's picture
Replies 7
Last reply 4/3/2015 - 8:30am

I was diagnosed in Jan 2014 and had lymph nodes removed from the left side of my neck, then did the 30 Hd interferon in April-March and failed it, it spread to my lungs so Dr put me on Yervoy and i finished it Aug 13th and i just got my second 3 month ct scans results and i'm and still NED..Whoot! I can't believe i've been NED for 6 months..Thank you Yervoy!!

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Melissag0624's picture
Replies 5
Last reply 4/14/2015 - 1:51pm

In the news this morning my personal doctor, Robert Andtbacka, who's is a leading melanoma specialist at the Huntsman cancer institute announced that they are one step closer to finding a cure by injecting lesions known to have melanoma with a mutilated form of the cold and herpes virus. The point of this injection is to activate the body's immune system to fight the melanoma and also to teach your body that the melanoma cells are bad and require fighting. They are still very early in the trails but patients who have had very advanced melanoma are having great results and even being deemed cancer free! They are still doing clinical trials, I don't know the specifics and what candidates they are looking for but your questions can be answered by calling his office at 1-801-585-0303. Keep on fighting!

Love, Melissa stage 3b, biochemo in 2013, year 3, primary left upper shoulder with lymph node involvement.

<3 Melissa

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BillyF's picture
Replies 4
Last reply 4/3/2015 - 8:28am

Hello all.

 

I was diagnosed with Stage II Malignant Melanoma, Nodular type Breslow 5mm, Clark IV. I went through a one-year treatment with Intron A.  I was treated with interferons to delay the recurrence of malignant melanoma. My treatment consisted of a one-month high dose of 30 MIU five days a week, and 18 MIU three days a week for another 11 months. Like many others on interferon, I did suffer from side effects like headache, nausea, fatigue, mild depression, hair thinning, muscle ache , fever, and chills.

 

During that time I was terrified and I feel that, without support of my loved ones, i would become depressed.

What was your experience? How did you cope with your fears? I mean, did you stay positive throughout your treatment and how did you achieve that?

 

Billy

 

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LauraJean's picture
Replies 6
Last reply 4/1/2015 - 11:14pm

Hi I was just wondering how many ladies here have been diagnosed with breast cancer after melanoma. Doing radiation now for stage 1 breast cancer. First melanoma was in 2007 stage 2, then another in situ in 2013, now breast cancer. Is this common? Thanks

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Eileensulliv's picture
Replies 5
Last reply 4/4/2015 - 10:50pm

I had my first ipi plus Nivo treatment about a month ago (my first ever any sort of treatment) and ended up with high fevers and vomiting, among other minor side effects. At first it was believed to be because my thyroid function was way off, hyperthyroidism. But after some time in the hospital and my thyroid improving but my fevers and vomiting getting higher and more frequent, my doctors were stumped. While in the hospital they started me on prednisone and I got better. I've been home a few days, and feel great aside from a lil diarrhea. 

Today I saw my oncologist to discuss how I feel now and where we go from here. He does not want to give me both ipi and Nivo since I had such a reaction to both, so he is going to keep me on Nivo every other week. This will start in 2-3 weeks once I am weened to a low enough dose of prednisone. 

While in the hospital, they did another ct scan. The tumors in my lungs are stable, no growth. There was previously an area in my intestine in which they were unsure if it was pooling of contrast, bowel "filling", or another met. Today that spot is gone off the ct completely! And the best news is there was a 2.4x2.0cm nodule in my intestine which is now 1.7x1.4cm!! So it's shrinking!! I know it's a little early to be so excited, but I just can't help it! the little bugger is shrinking!!

Eileen 

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catrob2015's picture
Replies 3
Last reply 4/7/2015 - 6:41pm
Replies by: JulieW, Janner, Anonymous

Hi all,

Just looking for abit of advice/reassurance as my husband is about 1.5 years from his diagnosis of stage 1b  of superficial spreading melanoma, it was 1.33 breslow deep. p2ta 

I have obviousley been worried throughout but for some reason i am just so worked up and obsessing about it at the moment, scared beyond belief that it will come back for my husband. My husband is very very moley with big moles and seems to be new ones appearing all the time, little ones, just feel really scared that i am going to miss something or his dr will miss something. We are in the UK so i worry the treatment isn't as thorough as it might be in the U.S and again that it will be missed, particurley when there are so many moles to look at. 

I am finding myself constantly searching/reading re stage 1b melanoma and making me incredibly anxious and depressed. We have a young 3 year old autistic son and i am 5 months pregnant and scared gonna lose my husband and what will i do and that it is a ticking time bomb :'( 

How likely is it to come back?? Is it more likely to show in skin or lymph nodes? And any other stage 1bers that have gone on to be ok, i worry as he has so many moles it is inevitable it will come back :(?

Sorry for the long post and rant. Just really to talk to people who understand, i know there are people a lot worse off and very grateful for where we are now but still can't stop myself from worrying about it.

 

Thank you 

 

Catherine

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barrykatz's picture
Replies 13
Last reply 4/6/2015 - 10:50am

My father has had his first cylcle of Yervoy. the only side effect so far is very bad itching. to the point where they rash is starting to bleed because of the scratching. Our Dr. said we are not allowed to use any cream on the skin whatsoever. We are only allowed to use Benadryl or Claritin,

 

This really does not make any sense to me. Has anybody used any cream to combat the itchy side effects ipilimumab / yervoy. Please let me know. I really would like to be able to help him with this ASAP. Thanks

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rick1981's picture
Replies 2
Last reply 3/30/2015 - 9:35pm
Replies by: Bubbles, Ed Williams

Hi all,

My wife is taking Dabra/Trametinib (re-challenge after they worked for 5 months up to december) - now in combination with Keytruda. So far it seems the targeted therapy worked for the "new" brain mets (see earlier posts) but the immunotherapy itself doesn't seem to do much (5 infusions so far). 

On Wednesday we'll get a new PET/CT scan and possibly move to Yervoy if the Keytruda didn't do enough.

But I'm writing now because more has been published about immunotherapy plus targeted therapy.

http://melanomanewstoday.com/2015/03/25/ucla-researchers-develop-effecti... (Dr Ribas)

Kind regards,

Rick

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/14/2015 - 1:49pm
Replies by: magnus31, tschmith

research has found that people with vitiligo have a certain blood protein that offers them some protection against melanoma?

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Cee's picture
Replies 6
Last reply 3/31/2015 - 9:00am
Replies by: Cee, Eileensulliv, Julie in SoCal, Anonymous

When you have a recurrence in the form of a bump under the skin, is it something that popped up very quickly or something that began very innocently enough that you watched it until you felt sure it was something to be concerned about?    Did it begin as a red circle and slowly become a bump beneath the skin and change colour?

If it was something that started out slowly, how long before it was at a stage where you were definitely concerned enough to see a doctor about it?

Thank you .

Cathy 

Stage 3a

Cathy

Stage 3a

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Jubes's picture
Replies 5
Last reply 3/31/2015 - 2:28pm

Hi all

just wondering what kind of pain bone met pain feels like. I have lung and chest Mets and for weeks now have a sharp pain in my back when I breathe deeply ( and pain most of the time there. It's more like the shoulder blade area) not unbearable but so it hurts to turn over in bed. I mentioned it at my last one appt but it was a new dr and he said it was probably just muscle pain. I have had it now for at least 6 weeks and won't see the dr till may. So just panicking a bit. Could it be muscle soreness from the pembrolizumab I am  on?

btw really enjoying all the posts from Brian and Ed etc:)

tks anne-Louise 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/2/2015 - 9:28pm
Replies by: Rocco

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