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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Anonymous's picture
Anonymous
Replies 3
Last reply 3/7/2014 - 2:48am

Hi 

Can you tell me if anyone who has been treated with ipi has any sucess with brain mets? I wondered if it works on them too? Also has anyone become NED with brain mets after the treatment. 

Thanks

 

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Join the Melanoma Research Foundation and melanoma patient/Philadelphia Inquirer blogger, T.J. Sharpe, on March 13 at 1:30pm ET for a Twitter chat on clinical trials and the patient experience. T.J. was "Patient #1" in a clinical trial to treat his Stage IV melanoma and will share his personal experience during the chat.

The MRF chat will also cover why clinical trials are important to the research and treatment process, how to talk to your doctor about participating in one and how to find the right clinical trial for you. Find the MRF on Twitter at @CureMelanoma, T.J. on Twitter at @TeamTJSharpe and on March 13, follow #MRFChat.

 
Want to follow the conversation but not active on Twitter? Simply search for #MRFChat on Twitter during the chat to watch the live discussion. The chat transcript will be posted on the MRF website after it concludes. 

 

Email the MRF's Communication Manager Lauren Smith with any questions at lsmith@melanoma.org. Click here to read T.J.'s blog, Patient #1.

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Janner's picture
Replies 10
Last reply 3/6/2014 - 2:55pm

Hospice Question - hypothetical or real experiences accepted: What can hospice offer someone who has given up on life? My Dad is stage IV melanoma and 89 years old. He's basically checked out. Spent the last 3 days in bed because his legs aren't working anymore. (We do not know his actual melanoma status - haven't had scans in 2 years). We've suggested bringing in hospice to help. My Mom isn't interested, doesn't want help. (She's 86 and stubborn and is the martyr who does everything but won't accept help.  Stressed to the max). Parents constantly fight.  Dad basically has said "I want to die". Now, his quality of life sucks and I get that. And his time is likely very short regardless of what we do.  But I'm just trying to figure out if hospice can really be of any help to us if Dad has already given up and Mom doesn't even want them in the house. Family dynamics!  Just trying to figure out what is going to be the easiest way to handle things when nothing is really easy.

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CasieLV's picture
Replies 1
Last reply 3/4/2014 - 9:02pm
Replies by: sunshinlilyrose

Hi guys, I am Casie, a 2 year melanoma stage 3 survivor. I was diagnosed a week after college. I have been blessed with a clean bill of health and now it is my mission to give back to others. I have a website, www.wear-awareness.com

 

We sell stylish, comfortable cancer awareness shirts. The best part about it, $8 of each shirt goes back to current cancer fighters. If you, or someone you know is in need, nominate them for us to give a gift package (worth $150)!  Nominate someone today and check out our shirts!

 

Thanks and stay strong!

Casie

www.wear-awareness.com

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Josh's picture
Replies 6
Last reply 3/9/2014 - 8:58pm
Replies by: Josh, hannahcopeland1, Mat

Hello All,

 

I'm currently 3 weeks into taking the combination BRAF and MEK inhibitor and over the past 10 days I've gotten a fairlly crazy acne-filled rash on my face. Seriously, my entire face is covered in whiteheads. I don't just look like a middle school student who subsists entirely on fried foods, I look like the one fried-food-eating teenager whose acne is ten times worse than the rest of his fried-food buddies. 

 

My doctors took me off of the BRAF/MEK drugs temporarily for the past week, and have prescribed two different steroid creams as well as an antibiotic. However, the zits are just spreading and getting worse. My understanding is that this side effect isn't that uncommon, so my question is has anyone here gotten it, and if so, what got rid of it?

 

Thanks a lot for any help!!!

 

Josh

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Anonymous's picture
Anonymous
Replies 16
Last reply 3/5/2014 - 2:28am

I’m new here. I have been reading the message board now for over a month. Three days before my 34th birthday I was diagnosed. I’m T2aN0M0. Tumor depth 1.7, no ulceration, mitotic rate 1. I had a WLE and an SLN biopsy all negative. I thought I would feel so good once those results came back and I made a plan with my oncologist. I like my oncologist, we are doing nothing except monitoring my overall health and meeting once every 3 months. His advice is probably what I will get from you “Live your life.” I’m of course also seeing a dermatologist every three months.

For the last 3 or 4 days I have just felt utterly devastated. It is like I just assume the worst; that it is going to come back. I have two kids under 4. I wonder if they will know who their mother was and if I will get to see them grow up. I appreciate Janner’s posts about how the BB is skewed for people like me. I only see people who progressed to later stages.

I know that prognosis stats are going to drive me crazy. There is so much variation. I think that lifemath.net seems to be the most put to date and specific to depth. I should be happy with the 15% mortality rate that it spits back at me for 15 years, but I just can’t be. I just can’t stop crying and I have to be on my game at work. I am the main provider.

I am just at such an emotional loss and I can’t snap out of it. I'm terrifed. 

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heiditemple's picture
Replies 4
Last reply 3/5/2014 - 1:50am

I just had my second infusion of 10 mg/kg ipi last Tuesday.  After my first infusion, I had very few side effects.. just a tiny bit of itchiness and very sporadic diarrhea.  Almost immediately after my second infusion, I developed a rash on the inside of my arm and I have been itching all over my body pretty much non-stop.  I know this is a fairly common side effect, so I'm not worried about it.  However, I was taking a shower yesterday in lukewarm water.  For some reason, my hands started feeling like they were on fire.. maybe nerve issues?  Is this something I should report to my doctor?  

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Michelem's picture
Replies 13
Last reply 3/6/2014 - 6:50pm

The battle didn't seem that long . .  . but despite the surgeries and ipilimumab, the cancer spread like wildfire. He died on Friday. We felt we had the best treatment available, but were always a step behind the melanoma. Our onc said while he has seen it before, those cases in which it spreads so very rapidly still take him by surprise.

Thanks to all here for the good info and support over the past six months. Wish the very best, and a truly effective cure, to each and every one of you.  mm

MicheleM

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momof4boys's picture
Replies 1
Last reply 3/3/2014 - 2:52pm
Replies by: Anonymous

I just had my 3rd pet scan the other day which came back clear except the thyroid which has shown up every time. My Dr said on the others they were thinking it might be behind the thyroid but this time they thought it looked like it was on the thyroid. I went for an ultrasound which she thought she saw something at first but then she brought 2 drs in and they couldn't find anything I guess. So this is strange. Whatever it is shows unchanged on the pet so if there isn't any nodule they can see then what could it be? I know IPI messes with it but my labs have been good thus far. Any thoughts would be appreciated!

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/8/2014 - 12:06am
Replies by: Whitehead, Barrieimage, jim Breitfeller, Anonymous

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Lisa - Aust's picture
Replies 6
Last reply 3/4/2014 - 8:36am

Hi All, 

Bit of a good news story. Hubby Craig and his mate Clint are doing the Busselton Ironman here in WA in December this year. Craig is currently doing very well on PD1 and Clint (Heal - some of you may know him) founded MelanomaWA here in Perth. Clint is also a stage 4 battler who has been clear for a year or so - previously having had around 35 odd growths surgically removed. Not sure yet whether they are crazy - but they are both certainly very inspiring with the way they have gone about their journey's so far - and this wont be any different. For those who dont know - an Ironman is 3.8km swim, 180km cycle and finishing off with a 42 km run (yes, all in the same day....hopefully!). So this is going to test their strength and endurance on many levels - but I have no doubt they will blitz it.

They featured on our local news (Channel 7) last night and we have also set up a facebook page if any of you on FB would like to join to follow the boys on their journey!

Its called:

Clint and Craig 4 MelanomaWA

Check it out and 'like' or 'share' if you want. The boys want to put a really big emphasis on raising awareness and the profile of Melanoma.

Thanks!

Lisa :)

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Pink's picture
Replies 6
Last reply 3/6/2014 - 8:14pm

Saw dr Weber today and I was asking about PD1 and he told me that if Ipi did not work that there will be a trial at Moffitt I could get into with PD1 and Il, it will be happening in a couple of months

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deardad's picture
Replies 2
Last reply 3/2/2014 - 4:11am
Replies by: Lisa - Aust, meldad

Hi anyone from Melbourne one this board supporting the walk tomorrow from the Catani Gardens in Melbourne?

Nahmi from Melbourne

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sjwilken's picture
Replies 5
Last reply 3/3/2014 - 8:09pm

I'm looking for blogs to follow.  Any good ones out there?  I''m following Chaotically Precise: Life, Love and Melanoma.  Wonderful blog with so much information.  Any others you recommend?  Thanks

 

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Brendan's picture
Replies 3
Last reply 2/28/2014 - 11:07pm
Replies by: Tina D, hbecker, Brendan

Hi Everyone,

I know that  many of us have been dealing with a swollen pituitary.  Mine started in January 2012 after my third ipi infusion.  Yesterday (around dinner) I fainted.  I felt a hot flash and told my wife I needed fresh air (22 degrees should do it).  I sat on my steps and then lost consciousness for 30-45 seconds (no harm from the fall).

I had the whole day to myself (my wife was working and my children were at daycare) so I was out and about all day.  I skipped lunch and barely had any water all day; plus I had about four cups of black tea.  Stupid, I know, but I have never had this problem and I've been dealing with pituitary problems for just over two years.

My Med Onc ordered a brain MRI just in case, but it sounds like I fainted from dehydration (I did not display any signs of having a seizure).  My cortisol is low as a result of my pituitary which means my reserves are low.

Just a heads-up/reminder to drink up.

Brendan

 

 

 

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