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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Replies by: GAngel, JimsWife, rosa1, Patina, Issy

Hi y'all, I've been browsing this board for a few months and am so thankful it exists. Hoping you guys can weigh in and lift my spirits.
A little background: My husband Jim is 34, Army National Guard veteran - 14 years of service, 2 tours overseas to Afghanistan and Iraq. He was diagnosed on 12/23/14 as stage IV with multiple brain, lungs, and bone mets (in his lower spine, left hip and femur) BRAF and PTEN positive. Primary diagnosis was a mole on his right temple in 2007, that was removed.
He had SRS in January to 11 lesions in his brain, then another MRI revealed there were 20+, so he had whole brain radiation in February. He also took Temodar during this time. After a couple weeks break, he started the braf/mek combo on 3/2. The side effects were mild until recently. He now has a nightly low fever, chills, headache, loss of appetite and fatigue. It seems to be getting worse and I'm so worried. Smoking pot doesn't help the appetite anymore and he just started cannabis oil 5 days ago.
I should add we've only been married 19 months and I'm 25 weeks pregnant with our first child. This has been so hard to deal with but lately I've been having a really hard time, especially now that I can tell he feels so bad. I hate this disease so much and what it's doing to him and our life. Any positivity would be appreciated :)

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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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Anonymous's picture
Replies 9
Last reply 4/7/2015 - 10:19pm
Replies by: bonusfries, _Paul_, Anonymous, kathycmc, Janner, Jubes, Mat

I am 35 years old male, who was recently diagnosed with Melanoma in Situ in February 6th 2015. 

I had my surgery done, and got my final results. All margins are clear. Even though that my doctors told me that it was just on the surface of the skin, I still have fear and questions. In 2014 I helped my mother to fight breast cancer, and year later I have been diagnosed with my Cancer. I hate that!

Thanks?

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Aundrea's picture
Replies 1
Last reply 4/7/2015 - 8:03pm
Replies by: Julie in SoCal

Not sure if yall can pull it up or not but my husband and I caught a series of 3 shows all about cancer.  Melenoma was on one  of them and it talked about the drugs alot of you alreay take and the drug my husband is fixing to recieve.  I hope yall can watch it online.  Very informative.  This really helped us understand better and it gives you some hope.  

 

The website is pbs.org and look for these 3 videos.  

Cancer: The Empores of All Maladies Majic Bullets 

The Blind man and the Elephant 

Finding the achillies heel 

 

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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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Mat's picture
Replies 6
Last reply 4/6/2015 - 10:12pm

Hopefully I didn't mess-up the link below.  I'm not aware of a better source of "one stop" information on melanoma than Celeste's blog.  In her latest post, she summarizes her story--and, in doing so, provides hope and guidance to all of us.  Good reading for a holiday weekend.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com

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csellers23's picture
Replies 14
Last reply 4/6/2015 - 4:40pm

I don't know what to do. The last 3 day we have been to the ER 4 times. High temp up to 104. They just send us home. He was seeing things and wasn't making any sense. They said what do you want us to do.. I got his temp down. But now it's like 83.9 to 94.9. Buy has been in his right mind. The while watching the UK game tonight. He started stuttering hid words and the left side of his lip went up. I called 911 they came took his bp and all and told me it sounds like he has a tumor on the part of his brain that controls his temp. And the pressure prolly caused it all. I called his doc and ask about hospices and he said he don't think we need it yet that it could be the keytruda killing the cancer. But it's like every day I'm calling 911 and it's getting old to them. But what am I to do. I weigh 90 I can't make him do anything. I have 0 help and 3 kids that I am so missing out on. And I'm so afraid he will have a seizure and come after me, or I will walk in one day and find him..... I don't know doing something that will scare the shit out of me. I give him His meds over 40 of them all at different times some 2 4 8 12 hours and others as needed. I can't eat. I don't know if I'm sick or just scared and my nerves tour up. I don't know where to turn or what to do. Any advice would be great Thank you. Ps he has tumors in brain bone lung soft skin tissue.

Crystale

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G-Samsa's picture
Replies 3
Last reply 4/6/2015 - 2:14pm
Replies by: Mat, G-Samsa, Ed Williams

Does anyone have the latest on the PDL1 (any updates on effectiveness or its ETA)?  In all the fanfare regarding approval of the anti PD-1 drugs, I've lost sight of the PDL-1, which was somewhat behind in the trials but in the same heat.   As I recall, the PD L-1 sets the blockade at a different place than the anti PD1 that in theory might be even more effective and have less side effects.  There were a couple of firms, including AstraZenica, that were racing to bring these to market.  Don't want to appear greedy, but it seems, many could use another option.

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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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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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dentholla's picture
Replies 9
Last reply 4/6/2015 - 10:18am

This week my family joined the collective journey that so many others are on....my husband was diagnosed with melanoma after having a funny looking mole removed from his temple.  I am turning into a crazy person trying to find out any information I can...and if I'm honest the internet scares the crap out of me!

In late January of this year we noticed rapid changes in the shape and color and it had all the warning signs of something we needed to look into.  He made an appointment with his dermatologist and had it removed in early March.  The results came back melanoma ... and here we are.  We met with an ear, nose, and throat head and neck surgeon this week that has him scheduled for a sentinel node mapping, WLE (?), and biopsy for next Friday.  My husband didn't have his path reports because I think he ditched them out of shock.  Here are the things I know - He is .8mm, clarks level iii, ulceration present (pretty sure about that one) and there it is.  That's it...you know what I know.  I scheduled a follow up with a melanoma specialist (oncologist) at UT Southwestern Simmons Cancer Center in Dallas for 4/22 as I've read we need to find someone who specializes in this disease outside of our regular dermatologist/head and neck surgeon. 

This is such a hard time, I've read it's one of the hardest times because there is so much uncertainty.  We are younger (he is 38) with 3 boys all under 7 (set of identical twins) and he is self-employed while I work outside the home.  We don't have grandparents that can step in and help so I'm starting to call on favors from our wonderful friends to help us out with the kiddos next week.  Any words of encouragement would be helpful right now... I have no idea how/when to tell the kids either…googling that as well.  I feel like we are doing everything we can to try and get in front of this but worry is eating me up.  Also, I have zero idea about what his recovery will be like...not to mention how long it takes to get back all these results.

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/5/2015 - 6:13pm

I'm just hoping someone can help me understand the difference between BRAF positive and negative in terms of treatment possibilities and outcomes.  45 years old and just diagnosed with stage 3/c-BRAF neg nodular melanoma on the bridge of my nose.  They are suggesting a radical lymph node dissection and then radiation once I have healed from surgery.

Any thoughts or suggestions?

Thank you all for your help.  Not sure what to think.

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yazziemac's picture
Replies 2
Last reply 4/5/2015 - 3:21pm
Replies by: _Paul_, Ed Williams

Hello all:

 

It's been a tough 2 weeks. Pete had one week of radiation to his back for pain.  The day after it finished he was overwhelmed with headache and vomiting.  He was admitted to our local hospital and given an MRI.  They had difficulty managing his pain and he was in hospital for 4 days.  The MRI showed many new brain lesions.  He is now home and begins whole brain radiation next week.  He continues on the Ipi and has now had 2 infusions.  His pain is now managed well.  Happy Easter to you too.

 

Yasmin

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Nadia's picture
Replies 5
Last reply 4/5/2015 - 3:15pm

We live in Canada, hubs failed ipi, had to interrupt Dabrafenib due to side effects, and after 12 shots of Keytruda the scans are showing growth in one of his existing lung nodules and new growth in the gastro hepatic ligament lymph nodes. He had a brain tumour, cyber-knifed in sept 2014, and as of last MRI (march 2015) has shrunk from 1.9mm to 1.4mm.

Other than the chemo cocktails, or going back to Dabrafenib and find a way to deal with the severe side effects, what other options do we have?

Are the TILs trials at NHI in Bethesda still open for international patients? What is the best way to approach them? Can we, as patients approach them or do we need a dr referral? 

I'm at a point where I need help, all the searches I do come up without anything else but IL2 and/or TILs; he appears to be excluded from any other type of trial due to prior exposure to ipi, antiPD1 and BRaf meds. Also, not sure about the vaccine type treatments, they all seem to require less than 3 visceral tumours, he has more than 12.  

Thank you for your input, I hope we can come up with something to keep us in the game a little longer.
 
 
 
 
 

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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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