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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MattF's picture
Replies 4
Last reply 4/15/2014 - 6:40pm

I have not posted in a littel while so I wanted to just come in and say hello.

Been on the Combo since Dec 2013....so far so good. Next scans are first week of May.

I will say the combo seems to be doing great work and I really have had minimal side effects...although I did start getting a little down after the stage IV progression and I needed to let my oncologist know so he can address the issue.

other than that i seem to get a lot of gas and bloating from the combo and some constipation...I have had some combo constipation vomiting then diaharea....so far only a couple really bad episodes but each time i think the stomach shrinks and i lose some weight. 

Anyway...how is everyone else doing on it?

any issues with abdomen? constipation? diahrea? lack of appitite etc?

Matt

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hannahcopeland1's picture
Replies 8
Last reply 4/19/2014 - 10:21am

Hello to anyone that is interested,

I am Starting a PD-1 trial on April 28th at Sarah Cannon in Nashville. It will be a much longer commute than I'm used to bc I am from Atlanta and have been basically able to walk to Emory to see my doctors for the past 2.5 years. A bit nervous about the stress that comes along with that . But eager to start the trial. I've got a pretty debilitating cough from the 2 tumors in my lung. I'm just hoping this version of PD-1 called AMP-514 works as well as Merck's. They have been doing the study at lower doses so far and I will be joining for the highest dose of the study, so I guess that's a good thing.

The only treatments I've done so far have been braf (first zel and then the mek/braf combo) until it stopped working last month. So This will be my first dive into immunotherapy treatment. And I'm nervous! I want it to work so badly! I'm getting married in August!

I guess I don't know what I'm posting about in terms of questions, other than if anyone has experienced this AMP-514. Maybe some encouraging words or advice for this 27 year old new commuting immunotherapy patient. I know many of you have a lot of experience and are very seasoned at dealing with these things. I'm trying to decide if I should try to hang onto my job throughout this trial etc

oh also, does anyone have advice for what to take along with codeine cough syrup so I can sleep? It does wonders for my cough, but keeps me up all night.

 

thanks for reading.

Hannah Copeland

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LibbyinVA's picture
Replies 2
Last reply 4/22/2014 - 3:46pm
Replies by: LibbyinVA, Anonymous

Does anyone have any recommendations for a dermatologist in the Chicago area? The patient is a young woman dx'ed with stage I melanoma. She needs follow-up checks. Should also mention she has very limited health insurance.

Thanks for any help you can provide!

LibbyinVA

Never, ever give up hope!

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Kate_perth's picture
Replies 15
Last reply 4/19/2014 - 4:22am
Replies by: Kate_perth, Lisa - Aust, washoegal, Anonymous, laura b

Just wanted to share this:-

When I was first diagnosed in 2012, I tested braf negative. It seems to be generally acknowledged that if you are braf negative, you always will be so you're not usually tested again. However, in 2013 I had a small metastases to my left breast and went to a breast specialist at a different hospital for surgery. As this was my first tumour with her (and very luckily for me), she tested me again for braf and the test came back braf positive. I am now responding very well to the braf/mek combo!

After speaking to a few research nurses, they have said that this seems to have happened to a number of their patients, though no one seems to know whether the tests are a little unreliable or the melanoma can mutate into braf positive with time.

My advice is ask to be tested regularly for braf... I can't even believe how lucky I was... If it wasn't for that small bit of luck, I would very likely not be alive - and now I have my best prognosis since diagnosis!

Take control, look after yourself and never ever give up hope!

Kate_perth

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MixtaJones's picture
Replies 11
Last reply 4/17/2014 - 5:15pm

Hello,

I am new to the world of melanoma and was only diagnosed with Melanoma 2 weeks ago. I just found out today I am most likely stage 4. I just met with a oncolgist today and will meet with radiation oncolgist tomorrow. Although I have full intention of giving this cancer hell and not giving in to it I am freaking out a bit. I feel the more research I do the less I feel I have a chance to survive. I had a ALND done and 24 nodes removed but they could not get them all. Everything I read says the drugs help people survive 10 months longer. That concerns me a ton.

I am hoping I can find some hope and guidence on this forum. I have tried reading some post but I have no clue what the lingo is. I feel like I am learning to text all over. what do "met" and "NED" mean? Are there any other terms I need to know?

Hope you all are winning your battles!

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Chellmarie10's picture
Replies 6
Last reply 4/16/2014 - 5:35pm

My husband Keith, 39 yrs old was just diagnosed.  No ulceration, 3.5mm thickness and we are seeing the oncologist today for the consult to do the sentinel lymph node biopsy.  Scared out of my mind.  We haven't even been married for 2 full years yet.  Any advice, help or even experience would be appreciated.  I come from a medical background so I know quite a bit already. I realize the thicker it is the more chance for metastasis. 

Any advice on what questions to ask the surgical oncologist today?

 

Thanks

Michelle

Chellmarie10@gmail.com

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/15/2014 - 9:40pm
Replies by: Anonymous

Once again Mollom has shut me out.  Tried to post recent melanoma related articles from e-alert of Journal of Investigative Dermatology.  There were quite a few, so I put them all in one post.  But it didn't go thru.  Tired of this.  What good does it do to then report it to Mollom?  Nothing ever comes of it.

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Shaggy 's picture
Replies 9
Last reply 4/23/2014 - 12:59pm

Lets see how many of my old mates are still out there.Ive not been on here for about 2 years.SHAGGY...the Fireighter from England for thos of you that remember me.

 

Diagnosed with stage 3 MM in July 1995..nearly 19 years clear.im on facebook as well if you want to add me.Ian Mutch and my pic is me stood near my fire truck

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/21/2014 - 11:14pm

I finished ipi last year and showed a major decrease in tumor size. Then in Feb...scan showed NED. In the meantime most of the side effects...itchiness, fatigue is gone...thyroid issue is still there. Would this mean that the drug has stopped working? I know it sounds silly but we all know the crazy thoughts that run through our head.

Let's work for better treatments....for a cure!!!!

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tcell's picture
Replies 9
Last reply 4/18/2014 - 6:02pm
Replies by: BrianP, tcell, Mat, pigs_sty
Anonymous's picture
Replies 1
Last reply 4/16/2014 - 3:36pm
Replies by: BrianP

"Currently, there is no useful laboratory test to monitor patients with early stage breast cancer who are doing well, but could have an asymptomatic recurrence,"

 

same with melanoma, maybe someday there will be a blood test for it too

 

http://www.scienceworldreport.com/articles/14021/20140415/blood-test-may-determine-return-of-breast-cancer.htm

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/17/2014 - 12:52pm
Replies by: Anonymous

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Replies by: Anonymous, Gene_S, Kim K
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/16/2014 - 8:00pm
Replies by: Anonymous

I have been hearing bout how anti pd1 drug is meant to be so good for patients on terms of long term survival but is there anyone that is 5 to 10 years out?

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Thankful for this site. It was the first thing I came across when Googling. The positive stories and photos are making me feel ok.

I have just left the GP's office for my test results and am so confused. A mole I had removed under doctor's orders has come back malignant, and now I have to wait to see if it has spread.

I am quite shocked, and trying to keep a happy face for my children. Husband is at work.

She said I would be contacted within two weeks for an MRI and further testing.

If I post the microscopic description, I hope there is someone who will be able to give me some further info, good or bad. I work in the arts - have always failed science and it all makes no sense to me - apart from the word malignant. I know that's not good.

Also, how does everyone know what stage they are? I wasn't told. How can I find out?

Ok, here is the microscopic description:

Sections reveal a melanocytic lesion which has an assymetrical architecture and in areas a poorly circumscribed peripheral margin. A lentiginous growth pattern predominates with epithelioid melanocytes and focally there is early confluence of the junctional lentiginous melanocytic proliferation. Isolated foci of pagetoid change are seen and there are a few nests of melanocytes at the dermoepidural junction. In a perifollicular region there is mild fibrosis and pigmentary incontinence. A benign melanocytic naevus is seen on the deeper sections and this is clear of the margins. Focally there is fibrosis and chronic inflammation, consitent with regression.

Conclusion: Left clavicular area. Malignant melanoma in situ extends to .7mm from the closest peripheral margin.

 

Does that make sense to anyone??

If it's bad just tell me. Honestly I would prefer to know. At the moment I have to wait for up to two weeks to hear from someone who will be able to book an appointment for me. Ugh. Torturous right? And it's Good Friday tomorrow, so no chance of hearing anything soon I would imagine.

The thing that is freaking me out, is I have been feeling awful for about two years. The GPs kept putting it down to my vegetarianism, despite my iron levels being fine. Or a virus. Is this why?

I will stop rambling now. Sorry. I just walked in from the GP, put the television on to keep youngest child occupied and proceeded to Google. I'm not usually quite so verbose. Thank you if you got this far. I think I'm just shocked.

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