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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jennifer_s's picture
Replies 7
Last reply 8/29/2016 - 10:58pm
Replies by: jennifer_s, Ninniditti, Gene_S, Anonymous, BrianP

My 48 yr old twin sister has been fighting melanoma intensely for the last year.  She still has several tumors in various locations, which after her last bout in April with recovering from Steven Johnson Syndrome due to a new immunotherapy, have begun to grow again.  We are still waiting to see what is going on with her liver (spots) and possible mets to the brain (again).  She is otherwise incredibly healthy!

She has asked me to do some research about mistletoe infusion therapy, so if anyone has even heard about this, has any experience with this, good or bad, I'd welcome your feedback.

On a personal note, I'd also be curious to see if anyone else has been in our situation: identical twins, one with cancer, one without.  It's incredibly difficult to see my sister going through this, and if it was any other disease, we could just switch out parts and she'd be fine.

Thank you for reading this, it helps to see how supportive everyone is, and how many people have not quit and even beat this.

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FengSFamily's picture
Replies 4
Last reply 8/29/2016 - 10:54pm

Dfeng lost his battle with Melanoma on August 6, 2016. He is survived by three young daughters ages 5, 3, and 2 years old, as well as his wife.     

 

https://www.melanoma.org/community/profiles/dfeng/activity

 

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JoshF's picture
Replies 9
Last reply 8/29/2016 - 10:49pm

Hi Guys-

I've seen some posts recently about fever and ipi. This is something I've been experiencing for tha pst couple weeks...right after 3rd dose. Typically it's a low grade fever, sometimes I get chills & sweats. I saw my onc on Thursday and mentioned but she wasn't concerned at this point as inflammatory responses are uncommon. Anyone have any insight into this? While I'd love to think it's a strong immune response, I'm also concerned. Today was worst day yet...

Josh

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

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KMick's picture
Replies 1
Last reply 8/29/2016 - 10:38pm
Replies by: JoshF

Anyone have updates on Jake and Charlie S.?  I think of them often and hope for the best but haven't seen any recent posts.

 

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jamieth29's picture
Replies 16
Last reply 8/29/2016 - 10:34pm

Just wanted to say Hi to everyone and ask for some thoughts. Tuesday is the big day and I'm scared sh*tless. I've been keeping up on the board and been thinking of everyone having there own struggles and bumps in the road. I will post again with results wed. I have had a nice last 2 month vacation from this crap. Just hope taf/mek keeps working. Was on it 4 months last year and 4 this year. Feel like a clock is ticking though.

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PFritz's picture
Replies 5
Last reply 8/29/2016 - 10:30pm

I truly truly hate the feel of all sunscreens, lotions, moisturizers so it really stinks that they now need to be in my everyday life! Does anyone have good recommendations for sunscreen, moisturizers/lotions with SPF (for days when not in sun much like work days), and makeup? Also any recommendations where the products don't have "bad/cancer causing" ingredients? I know Zinc products are recommended does anyone have experience with products with zinc that don't make you look like Casper? Thanks!

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slh4448's picture
Replies 12
Last reply 8/29/2016 - 10:17pm

Hey everyone,

i know that there are several people who have been or are currently on Yervoy 10mg. I was just curious if you could share anything about the side effects and how long side effects lasted? I have my first infusion tomorrow morning.

Thanks all,

Stacy


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Anonymous's picture
Anonymous
Replies 4
Last reply 8/29/2016 - 10:13pm

I had a thin melanoma removed in 2011, stage 1A, clear margins and follow ups with dermatologist. It came back earlier this year in my lymph node in the arm. Had SLND and 1 out of 7 lymph nodes were positive, but the 1 lymph node they are pretty sure were multiple lymph nodes matted together. I also had extracapsular extension. I am totally confused as I have two different Oncologist,  the hospital (a research hospital) where I have gotten my initial treatment and surgery and then my local oncologist for follow up. The hospital options given after surgery are s Clinical Trial, Interferon, or watch and wai, with no radiation. The hospital I went with for surgery did not offer Yervoy, as they feel the risk does not outweigh the results. My local Oncologist, is recommending Yervoy, but they wll only adminiser it at the 10mg dose, and  he is strongly recommending radiation. I traveled back to the hospital for a follow up from the surgery and advised of the local oncologist recommendation of radiation and he responded that it was my decision but in his opinion is not necessary due to it only lessens the chance of local recurrence in that one area and if it did come back there, they could again remove with surgery. He feels the complications with my arm from radiation may outweigh the results.

 I don't understand how every Dr. can have different opinions on treatments..

Any advice?

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Shaneswife's picture
Replies 2
Last reply 8/29/2016 - 10:05pm
Replies by: Stlmag, Anonymous

Hi

If your primary lesion is located on the left trunk and with a negative snlb on both sides, and your primary spreads to the right side lymph nodes is that considered a regional or local metastisis?

Thanks in advance.

Janis

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Anonymous's picture
Anonymous
Replies 0

Anyone hear from Janner lately? Haven't seen any posts just wondering. 

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Sflynn's picture
Replies 22
Last reply 8/29/2016 - 9:59pm

Good evening everyone... 1 year to his diagnosis, I lost my husband to this terrible this disease on Thursday 8/25.  He was only 50. I pray everyday that a cure will be found. I am left to pick up the pieces at only 40 years old with a 16 and 19 year old. It's not fair. 

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Replies by: Delores T., POW

This trial has been recommended for my niece.  Just wondering if anyone has any experience with this trial?  For background - my niece is stage IIC - diagnosed with a pink melanoma - 4.24mm deep, ulcerated with a mitotic rate of 9.  It seems like interferon is not a great choice.  I know it is controversial but wondering what the pros and cons might be of each treatment.  Thanks so much!

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/29/2016 - 6:31pm
Replies by: Anonymous, jennunicorn, MoiraM

I keep seeing situations where stages I and II patients end up with stage 4 years later. Other than self checks and dermatology appointments what are things like signs or symptoms we can look for? Without any kind of treatment we are just left to play the lottery with this disease. Any information is appreciated while doing this watch and wait stuff. 

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keepthefaith11's picture
Replies 6
Last reply 8/29/2016 - 6:11pm

Eva, been thinking about you wondering what decision you made about treatment. If you see this, let us know how you are.

Annie

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sallyandree's picture
Replies 4
Last reply 8/29/2016 - 4:28pm

My significant other has Stage IV melanoma which moved from the original location (his back) to his stomach.  The melanoma has only traveled to his stomach and has not metastisized to other areas.  He has been on an Opdivo and Yervoy regimen since April (he has gone through 5 rounds).  A PET scan was done a week ago which revealed there has been no improvement, so we need to look at other options for treatment.  He is NRAS positive and the oncologist recommends putting him on molecular targeted therapy, specifically a combination of Binimetinib and Trametinib.  This has been quite a week with this news, but we are trying to hang in there.  

Has anyone who is NRAS positive gone through targeted therapy?  

Thank you. 

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