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.

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I am waiting anxiously to hear from NCI to see if I am going to get into TIL trials. In the meantime, Abraxene has kept tumors from growing but I feel like it's bringing me down physically. I also made an appointment at Sloan Kettering in April just to see what they have to offer. Anyone seen Dr Shoushtari? I have been amazed at how smoothly things have gone with both places. Thank the Lord! I am praying and waiting to see what is my next step. It is a little scary, but I am excited to get this behind me. It's helpful hearing from those who have paved the way through TIL. I read all of your posts even though I don't always respond. You all have helped me gain courage to get to this point.

LisaG

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Tnscin84's picture
Replies 6
Last reply 3/26/2017 - 1:37am

Hello all. I come here for support for multiple people I know that have been diagnosed with MM. I pray for all of you daily. 

my Hx: 2009 Spitz nevus benign and removed completely and then some. 

Then ive convinced myself (after multiple people have been diagnosed around me) that I'm going to get or already have it. Because I had a few blistering sunburns, I used the tanning bed intermittently in college and have lots of little moles--haven't been out in the sun but twice since 2009. 

I had a moderately atypical one removed from my left shin almost a year ago and they got the lesion completely--and said if I wanted to have further margins I could for piece of mind but it wasn't necessary. So, with my anxiety--I had it removed which showed nothing in that skin.  Then a tailspin of anxiety (and hospitalization from panic) later--I have had multiple biopsies (15) that I have begged for--they have either come back "solar lentigo" or "nevus with architectural disorder with no significant cyrologic atypia).  I go to a derm who helps run the melanoma clinic.  I sent him this picture but it's the weekend and I'm having a panic attack. I'm not sure if this is normal pigmentation process around the scar or melanoma /cancerous. I can't remember if I noticed it last month. 

 

 

We just went theough IVF and after reading all the stories about pregnant ladies on here--I don't even want to try to get pregnant now even though my derm said pregnancy does not cause melanoma--it just might bring it out faster if it's already there but since I do monthly skin checks, am about do not mole mapping, and I see them every 4 months (bc I am paranoid), he said I would likely catch if early/in Situ IF* that would happen. I am in therapy for OCD/catastrophic thinking  I'm hypervigilant because of the experience biased or knowing people with it.  I try to remind myself most everyone has gotten blistering sunburns and overexposed to the sun but not everyone gets it. But it's just exhausting and I'm just waiting for it to happen.  very unhealthy I know.  I like reading all the information posted on here that's educational for sure.

 

Thoughts on this pigmentation at the bottom of my scar? Normal process 9-10 months out? I go Thursday to see him for a different issue but it's he weekend and I'm having a panic attack

 

http://i1347.photobucket.com/albums/p710/Anna_Cousar_Mechem/IMG_7754_zps...

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Nick C's picture
Replies 7
Last reply 3/27/2017 - 1:48pm

After four Keytruda treatment, I had my CT scan. The results:

1. Slightly improved metastic disease.

2. There could be a new focus of a tumor in the left axillary region. (Had two nodes removed at the end of October).

3. Otherwise no convincing new metastic diease.

Taken as a whole....this is good new for me.

Nick


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BarbaraF's picture
Replies 1
Last reply 3/25/2017 - 8:22pm
Replies by: debwray

My husband is early Stage IV melanoma. Next week he begins a clinical trial with Dr. Ann Silk of the Cancer Institute of New Jersey. 

Phase 1b KEYNOTE-200 (STORM study): A study of an intravenously
delivered oncolytic virus, Coxsackievirus A21 in combination with
pembrolizumab in advanced cancer patient

In this study, sponsored by Viralytics.com, a cold virus will be injected into his tumor. 

A similar trial is ongoing at Memorial Sloan Kettering, with the virus delivered intravenously, 

We have high hopes for the reported success of this trial but are mildly concerned about whether injecting the virus into his cheek could possibly damage his facial nerve. The tumor is just below his ear. 

any feedback? 

 

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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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