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 10
Last reply 8/30/2016 - 5:47am
Replies by: Anonymous, desertsun, Polymath, Toby0987, RaquelP, Patrisa

I'm a stage 1 from 5 years ago.  had an annual physical the other day and LDH is slightly elevated 252 U/L.  I'm not sure if i should be worried or take any further action because of this with regard to the risk of it being melanoma as the cause.

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vickiaa0529's picture
Replies 26
Last reply 8/30/2016 - 1:08am

Stage 4 

brain met at MDA

scared to death

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jennifer_s's picture
Replies 8
Last reply 8/29/2016 - 11:38pm
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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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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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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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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stotes's picture
Replies 15
Last reply 8/29/2016 - 4:16pm

Just wanted to reach out and hope to hear from others dealing with Stage IV as I am devastated and heartbroken.  First diagnosed as Stage 1A on L thigh in Feb 2008 and had wide excision wih no other treatment.  Almost exactly eight years later found a lump in L groin and found to be metastatic melanoma.  Had all superficial inguinal nodes removed and three were positive for melanoma and extranodal extension.  Had radiation to that area and started Yervoy at 3 mg dose in adjuvant setting (Stage lllC).  After first dose of Yervoy found a lump on right upper back but negative for melanoma.  Had two more doses of Yervoy and the lump grew back and is now testing positive for melanoma.  Awaiting PET scan on Monday.  I am BRAF negative.  I am completely devastated by how quickly I progressed from Stage lllC to Stage lV while on Yervoy.  I live in South Dakota and have been fighting insurance to get a second opinion but have been denied.  I don't have access to top melanoma specialists and feel desperate for some advice about what to do next.  I just feel like I have had the worst case scenario at every turn this year and I am terrified to find out what the upcoming PET will show.  Any advise will be appreciated - thank you!

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rabbits68's picture
Replies 2
Last reply 8/29/2016 - 1:32pm
Replies by: rabbits68, Anonymous

I have been on MEK combo for 16 months and my last scan was in April and showing regression of tumors. This past week I have been having low grade fever and body aches, I haven't had this but one time when I first started meds. The pharmacist said it was rare that people development side effects this late on the meds. Does anyone have any experience with this? Or if it stopped working for you, how did you find out. My next scan isn't until April and I am concerned we shouldn't wait that long. I appreciate any feedback you can offer.

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/29/2016 - 1:16pm
Replies by: Casitas1

Hi all,

Has anybody had really elevated lipase levels (1900, upper limit is about 160) but been asymptomatic? First we thought it was pancreatitis but a no fat diet and steroid infusions have not lowered the enzyme levels but resulted in some serious weight loss! Im waiting for a CT scan now and wondering what it can be. Thanks. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/29/2016 - 11:06am
Replies by: Casitas1

β-galactosidase is a hydrolase enzyme that catalyzes the hydrolysis of β-galactosidase enzyme into monosaccharides. Substrates of different β-galactosidases include ganglioside GM1, lactosylceramides, lactose, and various glycoproteins.

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