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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Kate_perth's picture
Replies 14
Last reply 4/16/2014 - 11:53pm
Replies by: Lisa - Aust, Kate_perth, 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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LibbyinVA's picture
Replies 1
Last reply 4/14/2014 - 2:11pm
Replies by: 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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hannahcopeland1's picture
Replies 7
Last reply 4/15/2014 - 8:49am

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.

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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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lisamariehenry's picture
Replies 4
Last reply 4/15/2014 - 10:06am
Replies by: Anonymous, patobs01, bj63, Fen

What should I do to prepare for this?  I know I have to take 650 mg Tylenol and 50 mg Benadryl 30 minutes to 1 hour before.  My appointment is for 2:30 p.m.  Should I eat lunch before?  Any info at this point would be greatly appreciated.

thank You!

Lisa Henry

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Ased's picture
Replies 7
Last reply 4/16/2014 - 8:51pm

Hello to all. My wife has been diagnosed with melanoma stage 4. Mass in esophagus and small spots in both lungs. She started on zelboraf last Monday. We are in Canada, so ipi is only available as second line treatment.  First few days she felt great, but yesterday she started to develop red painfull lumps on her legs and a few on her arms. I read the side effects and it is listed as a possible side effect, but it did say to contact physician immediately if it was present. It's Sunday so we can't call the oncologist until tomorrow about them. She is having a really hard time today as they are extremely painfull.

Has anyone else on zelboraf experienced this, and if so did the symptoms last or go away?

Thanks,

 

Ased

 

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Rocco's picture
Replies 1
Last reply 4/13/2014 - 11:09am
Replies by: G-Samsa

Friend of mine notified me that their family member recently joined our ranks with advanced melanoma - brain and lung mets.  Mentioned that the individual is in the midst of a Phase I trial - Ipi and Whole Brain Radiation. I believe his Ohio based trial (at The James Cancer Center - part of OSU) is part of the National trial # NCT01703507.

Wondering if anyone out there has gone thru a trial with WB radiation and Ipi?  Any thoughts or experiences to share?

 

Thanks in advance - and hang in there everyone!

-Rocco

Stage IV since 2005, Ipi responder since 2009, NED

Luke 1:37

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scroggins's picture
Replies 4
Last reply 4/14/2014 - 6:27am
Replies by: scroggins, Janner, Anonymous

Hello everyone,

I just discovered this forum while searching for information about melanoma.  It's great to see such a supportive community, and I wish everyone the best with their fight.

I just had two suspicious moles excised and sent for biopsy, and I was hoping someone here could offer their opinion on my case, as it is slightly abnormal.  The condensed version is that I'm an American living in Oman, which is obviously a region where they aren't quite as familiar with melanoma as in the west.  As a result, it was a bit challenging to find a doctor who was semi-knowledgeable and knew the correct procedure to follow.

I first noticed changes in a mole on my shoulder about four weeks ago, but because of the lack of familiarity with the potential dangers of melanoma, it was not removed until today.  They removed a second mole at the same time which has also been changing (very slowly) for the last 4-5 months.  The biopsy results should be available after about ten days.

Given the significant wait between when I first noticed the changes and the excision, do you think it is okay to wait an additional ten days for the biopsy results without doing any further testing of any sort?  

Thank you in advance for sharing your thoughts!

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mosalazar's picture
Replies 2
Last reply 4/14/2014 - 8:53pm
Replies by: BrianP, Anonymous

Hi everyone...

My name is Maureen and I live in California I was originally Diagnosed with stage 1 MM with WLE. During my initial diagnosis and treatment I found this wonderful site and message board late 2006. I participated, posted and supported all of my melanoma friends for several years. Currently I read the email posts from the yahoo groups only.  I sure have missed keeping in touch and life kinda has kept on going.

As of the last year I have had increasing arm pain in the general area of where I had my WLE.  No burning but this general ache and muscle pain. It was just off and on and now its daily and nearly all the time. I went to see my Primary family doctor and I am waiting on having an MRI.

Have any of you on this board experienced this before and what kinda of testing did you do. What kind of physician should you see?

Any help or suggestions are much appreciated.

Maureen

Maureen

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jend33's picture
Replies 6
Last reply 4/16/2014 - 10:24pm

Hi, im new to this site and my husband is starting to treatment but i always say we. He is my best friend and husband we have been together since I was 18 , that was 23 years ago. still the love of my life and I cant fix this one and it is killing me. i was with him the first time they removed the melanoma 15 yrs ago. i have gone threw everything with him with the MS. it really had its ups and downs but this again after 13 years of doing pet scans every year always clean, for the dr to say man i think you beat this we dont have to do them every year we can go every 2 . well let me tell you go every year PLEASE. He is stage 4 with them all over abdomen area one very large and other scattered threw out,  the brain they said way to many to count.we did whole head radiation it helped shrink the swelling and some of the lesions, he also has lesions from the ms in the brain and spinal cord. he was on rebif for a few yearsbut it made him feel worse so we made a deciosson together to give it a year with out the rebif , he did so much better was a ble to truly live without always feeling like you have the flu. didnt get anymore lesions while off it (yea). but now we are both scaredof what can come as side effects of the yervoy, but it is worth the risk. we already did the zelboraf first because tumor was so big and extremly painful in his abdomen. my poor baby is use to pain from the MS but good grief the zelboraf was a miricle drug worked great for 4 close to 5 month and stopped working . most lesions in brain gone only few left but there is a new one now and everything that went away from zelboraf is back full force in abdomen. my baby was a strong man this has kicked his azz. lost so much weight he can barely eat, and can ensure be any more expensive? sorry im rambling im not sure if this is even making sence my eyes keep tearing up as i write this . I am just praying that it works I cant loose him any time soon we were supose to grow old together. we are blessed to have three great children and other family who supports him.Has any one else with MS complete yervoy. and if so what wee the side effects i know everyone will be diff. we really are waiting for the pd-1 come on FDA. thanks for letting me ramble dont have anyone else totalk to about this thats going threw the same thing. we will keep fighting,

Jennifer Danko

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jag's picture
Replies 2
Last reply 4/12/2014 - 2:31pm
Replies by: arthurjedi007, BrianP

does anybody have an idea as to how far along in the trial process PD1 antibody is? I.E, when can you get it without a trial?

Regards

Insert Generic Inspirational Motto Here

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Nils's picture
Replies 5
Last reply 4/14/2014 - 2:20am
Replies by: Anonymous, Janner, Teochasse

Just had a suspicious mole/blemish removed Tuesday. Found out yesterday that it tested positive for melanoma. Have to go back and get it exited (which I think means completely removed) June 7th. I decided to look up melanoma this morning and am now freaked out. Us it OK to wait a month to get it exited (whatever that means)

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/13/2014 - 5:49pm
Replies by: secondhalf, Linny, Anonymous, Bruce Davis, Janner

What are the differences between getting treated at a Melanoma center verses Cancer Treatment Centers of America?  

I am weighing the options between Johns Hopkins and CTCA Philadelphia.  I have met patient with cancers other than melanoma that loved the CTCA , buts I am concerned that the CTCAs might not be most up to date with melanoma treatments

Thanks for your input.

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yazziemac's picture
Replies 3
Last reply 4/13/2014 - 10:27pm
Replies by: MattF, Teochasse, jahendry12

Hello

My husband is currently undergoing 33 radiation treatments for Stage 3 melanoma in his neck.  His initial tumour was diagnosed last July and he had surgery to remove it.  It recurred in January and he had a radical neck dissection in mid-February, 2014.  Of the 26 lymph nodes that were removed, none were postive for melanoma.  We are still processing this situation emotionally and I am very thankful to have found this site.  The comments from those who are further along this path are very helpful.  We chose to do radiation because his margins in one area were not clear after the neck dissection.  The radiation treatment disqualified him from doing the clinical trial that was another option.  The third option would have been to follow the radiation with one year of Interferon Alpha, which we decided against.  My husband, Peter, has finished 13 out of the 33 radiation treatments so far.  He is very fatigued and his skin is quite burnt already.  His throat is so tender that he is very limited in what he can eat, and his appetite is small.  The symptoms will intensify over the next 4 weeks, which will be hard to see.  Hopefully the radiation will kill whatever cancer cells are left in his neck.  We live in Kitchener, Ontario, and he is being treated at Grand River Cancer Centre with Dr. Knight and Dr. Fortin.  We also had a second opinion from Dr. Hogg at Princess Margaret before making our treatment decision.  He is BRAF and NRAS negative.

Yasmin

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Pennie Jo's picture
Replies 6
Last reply 4/14/2014 - 5:45pm

Anyone experienced fever while taking Mekinist/Tafinlar? My sisters fever spiked to 102.6 and wouldn't come down - called doc said it is a side effect of the chemo and a possible sign she won't be able to tolerate this chemo. Had me give her decadron (steroid) for the fever. So far it is bringing her temp down. Doc told us to not give the evening chemo dose - we see her oncologist on Friday. Just wondered if anyone else has experienced this - just so afraid the fever is from something more!!?? 

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