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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Lillias0201's picture
Replies 1
Last reply 3/8/2016 - 11:03am
Replies by: Janner

Three different people working at the same industrial chemical plant are diagnosed with melanoma within a two-year period. Person #1 has a stage-4B melanoma on a leg; I'm person #2 with a melanoma in situ on my forehead; and person #3 has metastatic melanoma with lesions on brain and lung, at this time that person still hasn't pinpointed the original melanoma site. Is there any possibility that the three of us could have been at higher risk for melanoma due to exposure to the chemicals in the worksite? Or is this simply a bizarre coincidence?

Lillias

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Momofjake's picture
Replies 17
Last reply 3/9/2016 - 8:19pm

Hi again...I come and go but do rely on this community for the wealth of experience and "on the ground" knowledge offered here! Yesterday my 18yr old son had scans. He has a very heave tumor load and has been in keytruda for 9 months now. Though I try not to get my hopes up too high, I just did. He looks so good. He gained 10lbs which hasn't happened in a year! He needed it. 

Well, no shrinkage anywhere in the last 3 months. His many liver tumors stable, bones stable, lungs stable, spine stable...several new tumors as well. Several in his chest and stomach(nodes?), peck muscles, hip, and the one in his rectum is more active. No brain scan this time. 

He plays tennis several times a week, goes to the gym, eats crazy healthy, supplements, rests a lot, and is really only doing his body right now. At 18 it's hard. He wants to be away doing life! College, anything but living with mom going to the hospital. He says he is okay, not discouraged. So grateful!

our doc at Huntsman in Utah says he will put his case in front of the board next TH. My question is what should I look to add/do from here? He has had his full DNA run 10 months ago in case there was anything we could do w it. Our doc mentioned ipi. We were able to skip ipi and go straight to the pembro. It has better data and less side effects! 

Hate the decisions. Afraid to go off keytruda w spine/liver mets for over 9 months now!! How long can he feel good like this? 

Thanks for all your support and knowledge. Love and prayers to you all--always!

Kerri--momofjake

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liam1209's picture
Replies 4
Last reply 3/9/2016 - 11:58am
Replies by: liam1209, Anonymous, Maria C

my dad was diagnosed july 2014 with metastatic stage 4 melanoma with melanoma in his lungs. he had 1 round of ipi and drs. kept monitroing.  from january 2015 to last month everything remained the same.  lung tumors did not shrink or grow.   last month however some new tumors appeared in the neck area. so, we have to back and get more treatment. i am asking for help to figure out what the best treatment out there is.  last time i was on here (around 1 year ago)  it seemed like the best clinical trial/ treatment was ipi/ nivo combo. what is the newest/ best treatment/ most effetice treatment whether its approved or clinical trials? 

thank you!!!!!! 

Liam 

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Cinmin1's picture
Replies 1
Last reply 3/8/2016 - 12:23am
Replies by: Patina

Hi All!

I've just joined and am so glad for the support! I've had 3 primary melanomas in situ on my right leg and many biopsies. Now I'm getting ready to have a swollen lymph node in my right groin checked. What do you think I can expect at the appointment? Also, my dermatologist made the statement that he thinks I'll have more melanomas, but didn't say why. He just said that I'll need to be rechecked every 3 months indefinitely. The last 2 biopsies came back as "atypical melanocytes with underlying changes of dermal (lamellar) fibrosis"--but I was told they were normal.  Have any of you had multiple primary melanomas? Also, is there something I should ask when I go in to have my lymph node examined? I feel a little lost!

 

 

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Richard_K's picture
Replies 13
Last reply 3/8/2016 - 7:13pm

Yesterday was my six year anniversary on Zelboraf.  I’m still taking 720mg 2x a day and my only continuing side effects are photosensitivity, some body rash, and some foot discomfort.

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Steve Plasier's picture
Replies 8
Last reply 3/28/2016 - 12:53am
Replies by: jennunicorn, Steve Plasier, geriakt, Polymath, Anonymous

I am just getting over having lymph nodes removed from my right armpit for stage 3 melanoma. My Doctor wants me to start Yervoy on March 16th. The main office is looking for help with charity organitations to pay the high co-pay costs of Yervoy. I am low income living on S S D I  benefits. I have beem wondering how patients are getting the treatments. Right now my cost will be 32,000. each infusion, which is way out of my relm.  Steve

Steve

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I saw this over at melanomaforum.org:  http://melanomainternational.org/2016/03/march-7-2016-side-effect-manage...

 

It answered my questions!

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SoCalDave's picture
Replies 5
Last reply 3/8/2016 - 7:13am
Replies by: Anonymous, Bubbles, Jubes

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Vamping's picture
Replies 1
Last reply 3/7/2016 - 12:31pm
Replies by: jennunicorn

Hi all, I am a male, 28yrs old. I discovered a mole (yet to diagnose) within a light brown lesion on my upper back body recently. I then immediately went to research about skin cancer. On a close look, the dark brown mole is 1 to 2mm, U shape in size. The complete measurement is about 3.5 to 4 mm together with the light brown lesion. With regard to that, I had yet to see any evolution for the month.

I already made an appt with the skin dermatologist in two weeks time however I am still anxious. So far, no bleeding or itching however I m exposed to sunlight most of the time.

Can malenoma not grow? Kindly advise.

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Anonymous's picture
Anonymous
Replies 9
Last reply 3/7/2016 - 8:09pm
Replies by: Anonymous, Maria C, BrianP, MoiraM, Issy

Did my first ipi/nivo  infusion on Friday and I woke up today feeling terrible.

A bit of loose bowel movement and I feel like i got a brick in my stomach and pretty tender around the liver wher i do have quite a few mets.

On top of that I have extreme fatigue.

I have been lying around for hours drifting off into space.

The question i have i guess is should i do anything ?

It seems like these are quite common side effects

I am on 4mg of steroids daily as it is but still i am like a space cadet today.

Any tips or things i should do?

 

 

 

 

 

 

 

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Elandmlmom's picture
Replies 4
Last reply 3/8/2016 - 11:26pm
Replies by: newmanmark, Anonymous, AllysonRuth

I was wondering who out there is dealing with mets to pancreas. I'm awaiting an appointment to see what can be done about mine. 

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ashley_k's picture
Replies 6
Last reply 3/7/2016 - 8:22pm

Hi everyone,

So, last week I noticed some pain (no lumps) in my left armpit.  My thin, stage 1A melanoma was removed 7.5 months ago about 2 weeks before I delivery a baby girl.  The melanoma was on the left slide of my torso below by left breast.  This past month I have had strep which I got from my two school age kids (and treated with a shot of penicillin and oral steroids in an ER) along with contracting some kind of short lived stomach bug which felt like flu about 2 weeks ago which everyone in the house got (I think it was Norovirus).

Anyway, this pain in my armpit has been there about a week.  In one sense I am trying to suppress the worry because I am feeling like I am a hypochondriac where the 'what if's" are creeping into my subconcious .  I did read a side affect of penicillin can be inflammation of lympth nodes and I know only a doctor can confirm.  I am also exclusively breastfeeding the baby which I have been told is safe (but then again the jury is out on that too but the baby refuses the bottle so it has me between a rock and a hard place).

Next month I already have an appointment made to speak with a genetic counselor at an oncology clinic locally.  We live in Hampton Roads which does not appear to have any melanoma speciality clinics nearby - and I have family in Maryland.  A friend has strongly recommended I go to a specialist in melanoma such as Johns Hopkins to get evaluated.  

So for those expereinced, might you be able to provide some suggestions?  I'm a bit concerned due to the recent article published about how melanoma diagnosed in pregnancy or within a  year of it has been found to be more aggressive then those found outside of pregnancy or a year of.

Long term - without the armpit pain being a factor, would it be too much of a stretch to go to Johns Hopkins to get a second opinion at this stage or should I wait?  

I asked my dermatologist this question and she suggested I wait to find out if it metatisizes before I pick a speciality clinic since many clinics specialize in one specific kind of melanoma / clinical trials.  I do not know if this is true.

Might anyone be able to recommend my next course of action concerning the armpit? (call the PCP or dermotologist or just wait and see)?  

Thanks,

Ashley

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Jubes's picture
Replies 2
Last reply 3/7/2016 - 10:25am

http://scienceblog.cancerresearchuk.org/2016/03/03/new-immunotherapy-dis...

watch the little you tube video  very exciting!

anne-Louise 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/6/2016 - 3:43pm
Replies by: Jubes

I saw something on the news yesterday about new cancer immunotherapy research but didn't quite catch it. Has anyone heard of new research where they remove cancer cells treat it with your own immune system and then put it back? I guess that would reduce the side effects of over active immune system. But I just saw the tail end. Could have got it completely wrong...

anne-Louise 

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Dalym44's picture
Replies 4
Last reply 3/6/2016 - 5:11pm
Replies by: MoiraM, jennunicorn, Dalym44

Hello, I was diagnosed in December of 2015 at the age of 27, with melanoma on my wrist. In January I needed to have a complete lymph node dissection. Currently I am stage IIIA. I have been recommended to start interferon or Yervoy to reduce the risk of reccurence. I would like to get an opinion from anyone on their experiences of using yervoy at stage 3. Also my PET scan came back negative and my chest x rays are clear. 

One other question I have remained out of work due to my surgical drains. I was curious whether I should request some additional time to adjust to which ever treatments I choose, or whether the side effects may not begin for a while??

 

thank you 

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