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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ajpeterson's picture
Replies 9
Last reply 3/25/2017 - 12:57am

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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dawn dion's picture
Replies 6
Last reply 3/24/2017 - 9:49pm

Hello Keytruda peeps. After spending nearly 2 yrs on Keytruda I have been off the drug for nearly 13 weeks. I know that side effects can last for up to a yr. I currently have uncontrolled itching. Was given Hydroxyzine doesn't even touch it. Lotions not touching it. Any suggestions? Has anyone else experienced this?

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Momofjake's picture
Replies 19
Last reply 3/24/2017 - 9:18pm

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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BarbaraF's picture
Replies 2
Last reply 3/24/2017 - 7:38pm
Replies by: BarbaraF, jennunicorn

Patient is Stage III C with melanomas on the face, two recurrencies, first involved a skin graft from thigh. Second was within a month and near original site.

We are in the process of choosing therapy - clinical trial or oncologist. Meanwhile two suspicious bumps have appeared --  one that does not break the skin near the original area and another on the leg. Patient wants to wait until the next regular appointment - 2 or 3 weeks from now. I think he ought to go PRONTO. Opinion? Monthly? 

 

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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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mrspink's picture
Replies 14
Last reply 3/24/2017 - 6:31pm

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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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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Hukill's picture
Replies 6
Last reply 3/24/2017 - 5:23pm

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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Anonymous's picture
Anonymous
Replies 1
Last reply 3/24/2017 - 3:54pm
Replies by: marta010

Has anyone experienced uveitis with ipilimumab treatment?

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Aloha14's picture
Replies 4
Last reply 3/24/2017 - 3:49pm
Replies by: Jamie1960, Aloha14, Janner

Has anyone had Melanoma start as a blister that has liquid in it? I accidentally broke a blister that I didn't even know I had and all the fluid came out. I'm getting the area on my leg checked next week but just wondering if it could of been the start of another melanoma. 

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welcome32's picture
Replies 2
Last reply 3/24/2017 - 3:12pm
Replies by: welcome32, Toby0987

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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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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DocPain's picture
Replies 3
Last reply 3/24/2017 - 2:52pm

I had melanoma 10 years ago and after surgery and 5 years of scans and MRIs I was clean with minimal likelihood of recurrence.  I was just diagnosed with melanoma again last week.  Nothing was visible because both spots are in my left lung.  Currently waiting advanced report to determine if there is any mutation.  Talking about immunotherpay. 

Doc Pain

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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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