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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Bigdaddy5's picture
Replies 1
Last reply 3/27/2017 - 1:28pm
Replies by: AshleyS

I have been following Array and the progress on binimetinib.  

Looks like NRAS patients won't have a solution in MEK162 / Binimetinib since Array has withdrawn the NDA for the NRAS specific treatment that showed positive results after results of NEMO trial concluded last year.

Passing this along.  Hope all of you are doing GREAT - and if you aren't - know that you are in my prayers.

See below link:

https://www.drugs.com/nda/binimetinib_170319.html

 

Best,

Neil D

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/25/2017 - 9:49am
Replies by: Anonymous, marta010

Has anyone experienced uveitis with ipilimumab treatment?

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welcome32's picture
Replies 3
Last reply 3/25/2017 - 1:48pm

My daughter was diagnosed with melanoma in August. 2016.  Her melanoma was just under 1mm and had it completly removed.  She also had the setiinel lymph node removed which came back with micro cluster of cells.  She is being seen at Sloan Kettering in NYC.  At this point she is not in amy treatment, but is due for a brain MRI, pet scan and ultra sound of under her arm where the Sentinal lymph node was removed.  She did have an ultrasound in December of that area and it came back clear.   After the Surgery she had numbness under her arm, which I know is normal.  In any case for the last week and a half she has been periodically feeling aware that something is different in her armpit.  She is not sure if she is just noticing this because the feeling is comng back in her arm or if it is new pain.  She feels a subtle ache in the area in her armpit where the lymph node was removed.  in the last few days she has felt the sensation of it being swollen, though it doesn't visually look swollen and there are no visible lumps.  It is tender to the touch.  She lives near my other daughter who touched the area that she fees is swollen and she did notice that the tender area feels slightly firmer that\ the unaffected side.  We have an appointment scheduled in 3 weeks for all the tests.  Just feeling so so anxious.  Any suggestions, advice.......

 

 

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Hukill's picture
Replies 10
Last reply 3/27/2017 - 3:52pm

I will speak with my pharmacist next week but I was wondering if anyone had any info on this. Before starting the ipi/nivo combo my wife and I were specifficaly told that we could not risk exchanging body fluids due to risk of transfering ipi/nivo to her. We were told to not even share bites of food or use the same spoon ect. We were also told to use condoms. Did anyone else on the combo receive this information when you started treatment? If so where you given a time frame after stopping treatment when you no longer had to worry about transfering body fluids?

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SOLE's picture
Replies 3
Last reply 3/24/2017 - 5:38pm

Hi everyone,

I wanted to share and ask your opinion on my PET/CT results. 

Increased uptake at my original primary site compared to pre surgery. (SUV max 2.4 compared to 2.0). I believe it is due to inflammation of the scar still under my foot. It is slowly healing but takes a lot of time to ressemble to the rest of the skin. That was a complete skin graft and its still sore and a bit swollen at the end of each day. 

One new hypermetabolic spot found in my knee just above at the sartotius muscle (no SUV reported). Evidently, I don't walk straight with my right foot and my body is off balance. Nurse said it can be that or many other things. Non specific at the moment. 

One very small groin lymph node has enlarged and went from 3x2mm to 5x4mm. At that level, its not picking up any glucose and is not lighting up. 

Everywhere else seems fine at the moment  

Will see my oncologist when I return from my bussiness trip mid April. 

My questions/advice to you

1) What do you make of the single node that has doubled in size? I am finally considering having the CLND when I come back home. Even more if it can get me in a BMS trial... (not sure with my blood condition but I'm trying hard to get in somewhere.)

2) Can only strain put on a knee allow it to light up? When its reported non specific with no uptake value, what does it mean? Would you worry? Why?

3) Since I declined the only solution offered to me as adjuvant, interferon, and not having access to anything else (trials due to my blood condition or ipi because not available in Canada), does anyone know if buying myself a year worth of Pembro 9 months after dx can still be effective despite the "protocol" of the pharma trials of often 3 months? I will likely sell much of my assets in the coming months to try to get some systemic treatment in my body. I don't think there is any other way. 

Thank you all. 

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TexMelanomex's picture
Replies 13
Last reply 3/29/2017 - 10:10pm
Replies by: TexMelanomex, Nick C, Anonymous, Gene_S, Momofjake, jahendry12

Hey Warriors!

I completed the WLE & skin graft on my scalp and SLNB at MD Anderson on Tuesday and returned home today. I'm a little punchy from the high dose of Norco but I wanted to give an update (so please forgive any typos or ramblings).

So...the lymphocyntigraphy was the easiest part of the process by far. It took about 90 minutes and 4 injections to get all the 3D pictures to work from. These stung a little but not too bad as they were on the scalp.

Then it was on to pre-op where Dr. Ross estimated the process would likely take about 3-4 hours (it ended up taking 5.5 hours). It turned out that I had 4 nodes at three sites that lit up and 2 were very deep in the side of the neck, the other two were in the back of the neck. I also had a skin graft (from my bum of all places!!) along with a bolster placed. I guesss people were right all along, I really am a "butt head". Dr. Ross finished up with me around 8:00 pm and my fiancee was the only one left in the waiting room. He spent the time to sit with her and explain how things went which she really appreciated. (Kim, he hasn't changed a bit and was very compassionate with her as she was worried sick being the last person in the waiting room that day).

I was kept overnight in post-op due to pain (which I really cannot remember having at this point) and the administration of dilaudid (if you've ever had dilaudid, which I hadn't, you can attest to what an incredibly powerful drug this is). I'm acutally glad they did this because it made me feel a little better being at MDA for the night since this was my first surgery of any type. I like to think I have a high pain tolerance but apparently I wasn't giving them a good answer on the 0-10 pain scale. To be honest I was still so loopy from anesthesia I don't recall having the conversation at all but was reminded of all the goofy things I said/did that night by the attentive nurses.

Dr. Ross was back in action early the next morning to come see me and discharge me. Overall, very impressed with him and MD Anderson. The bolster feels weird but will be removed next week and hopefully I will have results from the lymph nodes the same day but it may be a few days after the removal. I'm very interested in seeing what skin from my bum looks like on my head. Between doses of Norco I'm still seeking the best way to camouflage this bolster...fortunately its positioned high on the back of my scalp so I can manage to fit a baseball cap over it, a bandana (do rag style) seems to work, but the real trick will be next Monday at work. I work in a professional environment and a hat is kind of hard to pull off, a bandana simply wouldn't fly, so any suggestions are greatly appreciated.

Despite the purpose of this trip to Houston I found ways to enjoy the time down there. Going to the Galleria, trying some local fare, and simply enjoying some simple things was great. Of course there isn't much enjoyable about surgery, but even in that I tried to remind myself (when I was coherent) that hey, I'm alive and I'm in the fight! The waiting for things to happen was really bothering me and even though I might not get the results I want from the SLNB I at least got the primary cut out and  I can prepare for the next phase of battle.

I want to thank all of you for words of support and encouragement, for sharing your experiences and for being part of this community. In the short time I've been a part of this I have learned a ton and really appreciat all of your experience and strength!

 

Tex

 

Tex

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/26/2017 - 12:58pm

Hi everyone,
I'm curious if anyone had switched to a plant-based diet? And if there is any benefit related to a diet change? Thanks!

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Scooby123's picture
Replies 1
Last reply 3/24/2017 - 2:53pm
Replies by: Aloha14

Hi Guys,

Was  thinking when I was under the dermatologist for checks he said when I had my melanoma taken out that I would not get another one. Now I know from this lovely supporting sight that you can still get other melanomas appear . My question is if the primary is taken out but it has spread does it make any difference to able controlling it spreading more due to primary gone or once spread can just be as aggressive. Sorry but just bugging me so thought I would ask you guys. 

Scooby❤️

 

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JoshF's picture
Replies 23
Last reply 4/14/2017 - 12:41pm

Thought I'd drop in and say hello as it's been awhile. I hope everyone is doing well. I'm still trying to recover from TIL and have been very weak & lethargic. I was actually supposed to go to MDA this week for the Keytruda portion of the trial but too weak. I'm going to withdraw and do Keytruda at home. I've never been so physically impacted by this disease and the treatment. I had one sub-q shrink to nothing but that's it. It's been about 6 weeks since TIL infusion so I'm still holding on to hope this works. Not sure with performance status that I'd have many options left. I hope everyone is well, I saw Brian good news, saw Jake is doing good but having SRS...I didn't look past 1st page but I think of you all often. Blessings 

Josh

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

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/24/2017 - 10:05am
Replies by: cancersnewnormal, Anonymous

Hello!

I am sure that this subject has been already discussed on this Forum.

My husband treatment is a combination of SRS and Keytruda.

Aftef the Gamma Knife procedures he usually develops edema and have to use Decadron to alleviate it.

The doc  tries to go not above 6-8 mg per day.

Just wanted to hear from other people who experienced similar

situations and how they overcame it.

My concern is that decadron will interfere with immune system and diminish the effect of Pembro.

 

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Lddaughter's picture
Replies 6
Last reply 3/24/2017 - 10:38am

Just wanted to post an updated. We FINALLY started the Taf/Mek combo yesterday morning. After 2 months of unknown we feel like we are doing something. We are hopeful, optimistic, and overall in good spirits. We need this to work, even if just for a short period of time. I started logging our medication and eating times. So far no side effects (wasn't expecting much after 1 day). We are starting the mornings with fresh juiced oranges and that seems to help her energy a little, plus it isn't just water which is what she drinks the rest of the day. 

Thanks for those who are reading and giving continual support. Although this is just the beginning it is a huge weight off our shoulders knowing we could feel better in the next few weeks. 

-A

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ajpeterson's picture
Replies 11
Last reply 3/25/2017 - 4:08pm

I was diagnosed with Melanoma a few weeks ago, it is in my left lymph node in the groin area.  I had a think mole removed on that same side on my lower back 2 years ago and it was removed with "clean margins". 

I have a meeting with an oncologist who specializes in melanoma next week, and I've been told that I'll need to have it removed, along with others around it...plus something else? (immunotherapy, chemo, etc).

I'm a 3rd grade teacher, and I'm trying to figure out if I'll still be able to carry on with my job, taking minimal time off for surgery and treatment.  Do you think this is realistic?

 

 

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Momofjake's picture
Replies 20
Last reply 3/26/2017 - 1:41pm

Hi friends,

Have not been worrying about SRS on Jake's 6mm brain tumor because after 30 months of this stuff I know better. Worrying doesn't change a thing!! In fact Jake was just in my room. Him and his brother just got back from the gym and they are eating crazy amounts of breakfast at bed time!! He looks so good! He is really cheerful. 

Hoping this radiation is as easy as they say and that he doesn't have too much down time. He has had TAF, Pembro and ipi in the last 18 months. Hoping this combo is somehow the magic that lets Jake go start his life! 

Hoping tomorrow is okay!

Prayers to all,

kerri

 

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mrspink's picture
Replies 16
Last reply 3/28/2017 - 3:25pm

Background. My dad was originally diagnosed with melanoma on his chest back in 2013. Checked 8 lymph nodes and found nothing. After that I don’t think he went back for any follow up.

March 2017. We thought stroke with loss of some motor function and speech. MRI showed 2 large brain lesions. 1st tumor removed March 13th from the left side in emergency surgery. Confirmed melanoma (approx. size of ping pong). Going in for 2nd tumor next week.

Small spots are seen on his liver and lung.

They are talking targeted radiation right now. I’ve only had about a week to process this and haven’t been in direct contact with the Dr’s yet but I’m waiting for a call from his Oncologist and will be speaking with the surgeon at the next surgery.

So if anyone is willing to help point me in the right direction I would appreciate it. Questions for Oncologist? From what I’ve read this is stage IV correct? And from what I’ve read not good. Should I be talking quality of life?

Questions for the surgeon? I know they are mostly concerned with surgery and not prolonged treatment but I want to get as many questions with him while I can.

I appreciate any tips or tricks. We’re in California. I'm more than likely the person that will need to be asking the hard quetsions for my family. 

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