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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Question, my husband has brain lessions bleed he is on a antidepressant and was to start vemurafenib and cobimetinib with his keytruda. Now pharmacy says interactions with vemurafenib and cobimetinib so doctor wants him to wean off antidepressant before starting the combo. I have read antidepressants can cause brain bleed . Wondering if anyone has heard of this . Thanks

Cathy Jewell

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Anonymous's picture
Replies 0

If you have melanoma intransit. Do you need to do a SLNB again? My pet/ct was clear.

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jvictoria's picture
Replies 4
Last reply 12/4/2016 - 2:15pm
Replies by: jvictoria, JoshF, _Paul_

Hi everyone,

Currently on IPI and Pembro, just took my second dose this week. This all comes from progression to my lungs and liver. In addition, last week three lymph nodes swelled up, right elbow, shoulder and on my rib. Doctor said it's not unusual to see progression before their is regression... so here we are praying for regression.

So, reaching out to you guys to see if anyone has any exposure to TIL Therapy; hoping this may be an option.




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Scooby123's picture
Replies 3
Last reply 12/2/2016 - 10:42am

Hi all,

can you explain what is high tumour burden. Not sure if it is how big the tumours are, or how many you have or how many organs it has spread too. 

Hope you all are doing as well has can be.






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MichelleRHG's picture
Replies 8
Last reply 12/12/2016 - 11:11am
Replies by: Natjocur, MichelleRHG, brewgirl68, Fen, Anonymous, jennunicorn


7 1/2 years ago I had a Stage 1b melanoma on my thigh which was removed with a negative sentinal node biopsy. In October I found an enlarged lymph node in my groin, same leg. Needle aspiration confirmed melanoma and I had the 10 nodes removed from there 3 weeks ago. The other 9 are apparently clear (waiting on 2nd pathology lab to double check) Brain mri and PET scans all fine.

Question 1: My local onc. insists this is stage 4 because it is a recurrence. I just returned from MDAnderson and both onc. there say 3b (regional recurrence). Local guy says yes, if it were the initial lesion with this positive node it would be 3b, but since it has metasticized it is automatically 4. Which is it? 

Question 2: If it is 3b, and since I have no cancer at this time, MDA recommended Yervoy (what is FDA approved for this stage) or a clinical trial where I would get either Yervoy or Keytruda assigned to me. I would find out at the start which one it is. I could do the Yervoy in my town but would have to travel 2 hours for the trial. If I draw Yervoy, would it make sense to drop out and just have the same tx in my hometown? What do you all think about these 2 options? I want Keytruda, right? I homeschool my 10 year old with Down syndrome so pretty concerned about side effects getting me down and out but more concerned about recurrence and death!!

Question 3: I am scared to death and the anxiety about this is taking over my life. All 3 oncs say 50/50 chance of recurrence within 5 years with no further treatment. How do you all get past the fear? I keep telling myself "Today you do not have cancer"

Any and all advice and ENCOURAGEMENT AND HOPE is welcome! Thanks in advance.

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stevecathy's picture
Replies 7
Last reply 12/5/2016 - 2:15pm

My husband has been fighting since July 2015. So everything has went pretty good , until September 26th . He was feeling quite right , arm and leg felt heavy. Went to primary, was sent right to hospital, found brain metastases. Fast forward, he has radiation and started keytruda. Completed 2 keytruda, the third will be today. But he had a fell last Friday, feel to his knees and could not walk . So here we are back at hospital still not walking good so not ready to release. Dr wants to add vemurafenib and cobimetinib with keytruda. He has been on mekinist and taflinar prior before brain mets. Wondering everyone's thoughts on keytruda with vemurafenib and cobimetinib? Anyone done this combo and luck with brain mets? I would appreciate any words on this. I truly am at a loss . Thank you

Cathy Jewell

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Hriggenbach's picture
Replies 4
Last reply 12/4/2016 - 9:16pm

I'm set up for wide local excision surgery and lymph node testing very nervous. Anyy info would help I'm very worried the melanoma has spread  this is my pathology report Word for Word 

Ulcerated invasive spitzoid malignant melanoma 

Breslow Depp at least 2.3 MM Clark's level IV
ulceration present
Focal angiolymphatic invasion present
No neurotrophic invasion present 
No microsatellitosis present 
There is a brisk host inflammatory response 
Note: The breslow depth maybe deeper than reported as the lesion is seen extending to the base of the biopsy specimen. The AJCC staging for this lesion is PT3B Pnx, stage IIB. The mart-1 strain efficiency highlights these meanocytes with the PHH3 highlighting Mitotic figures

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JoshF's picture
Replies 9
Last reply 12/2/2016 - 4:49pm

Hi all-

Latest news on my front is LDH has skyrocketed on last blood test. MDA uses different ranges, I believe around 330-620. My LDH came back at 2558! I called my onc down in Houston. He agreed my LDH has been up & down. Last time it was high was right before cell infusion. Then it came down significantly. He stated there can be various reasons of it being elevated. Once again, I'm so disappointed. Has anyone with elevated LDH exhibited symptoms? Are you more fatigued etc?? Physically I wouldn't say I'm a 100% but I don't feel horrible other than mentally. Especially since I asked if there's progression at scans in 2 weeks, what is next step. Looking at doing TIL if need be in January, it's all overwhelming. 


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

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G-Samsa's picture
Replies 0

Has anyone heard whether there have been promising results from the Immunicore trials combining their "T" cell therapy  with Eli Lilly's immunotherapy drugs (galunisertib &merestinib).  I believe trials were initiated in 2015..... Any experiences?

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Jules's picture
Replies 9
Last reply 12/3/2016 - 11:58am
Replies by: Polymath, Bubbles, Jules

Hey everyone,

I have posted once before about my father who is currently stage 3C BRAFV600K positive. 

Quick summary about his battle with melanoma- primary mole found in 2003, stage 1.  He remained diligent in his cancer screenings and continued to see his derm every 6 months even after he went 10 years without a reoccurrence. Flash forward to March of 2016, swollen palpable lymph node in his collarbone positive for melanoma. End of May neck dissection, one more out of 10 nodes had microscope traces of the cancer. Started Yervoy and completed 4 doses.        End of august to early September Sub qs popped up right at the scar incision of the surgery and have grown since. Pet scan showed 3 sub q nodules with an uptake that ranges from 2.9-5 and a bilateral node w an uptake of 2.9, both his melanoma specialist and radiologist believe it's from the immunotherapy. Brain MRI done at the end of October and thankfully that was clear. LDH ranged from 162-185, he's still working and has a physically demanding job. 

I was hoping he would be put on the taf/mek combo, the largest tumor around his shoulder has grown and was causing so much pain and the nodule on his neck has grown causing both pain and getting him very down. It's bad enough knowing you have cancer, even worse when it's staring you in the face everyday. I know the targeted therapy works and works quickly, new 3 year data showing patients like my dad had a very high chance of responding for a long period of time- but he was put on keytruda and radiation. My fear is that immunotherapy doesn't work as well on BRAF positive patients and that he really needs therapy that targets the mutation. I know opdivos combo study has a little data that suggested wild type responds much better. 

I'm writing today to get some input- my dad means the world to me, since the day he was diagnosed I made it my mission to know as much as I could about this disease and kept myself up to date on the latest treatments, I owe a lot of what I have learned to this community. I respect and value the thoughts and opinion anyone would have on his treatment plan. Has anyone been on radiation plus immunotherapy, esp anyone who has the BRAF mutation? I've read data about how radiation could help trigger a response but if anyone has more information I would love to read it. 

Thanks in advance

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Anonymous's picture
Replies 1
Last reply 12/1/2016 - 10:07am
Replies by: Janner

Just wondering what is the difference between intransit and local re..

What do intransits look like?

Can a intransit be in situ or do they all have depths?

What is a local re?

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Nicklindner's picture
Replies 5
Last reply 12/1/2016 - 3:57pm

I am 33 years old and was originally diagnosed in 2011 with stage 3 c in my upper left shoulder and lymphnodes. They removed everything and did scans and found no further trace. I have been meeting with my oncologist and dermatologist regularly for the past 5 years. Last month I noticed a lump on my right side and long story short it is melanoma. Scans revealed the cancer has spread to my lung, spleen,right side, mid section. Dr prescribed opdivo and yervoy since I am BRAF negative. I am getting a second opinion at Penn next week. Guess I am looking to see if there are any success stories out there for situations like mine.  Just found out yesterday so not really sure how to deal with a prognosis of 12-18 months especially when I have a wife and 2 little kids at home.

Thank you. 

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Kimmie82's picture
Replies 7
Last reply 12/4/2016 - 9:03pm
Replies by: Kimmie82, dmturner, SOLE, Anonymous, jennunicorn

Hi all...I'm seeking some advice for adjuvant therapy after my latest diagnosis of an in transient metastasis. Luckily my scans were clear everywhere else so I went from a stage IIIa (which was my orginial diagnosis) to now a stage IIIb. It's been 7 years I was disease free and then it decided to rear its ugly head agsin! I recently had wide excision and now contemplating immunotherapy. So my question is to yervoy or not yervoy? 

any thoughts or experiences greatly appreciated! 

<3 Kim 

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Helping Hands's picture
Replies 12
Last reply 12/4/2016 - 12:32pm

First off I would like to wish everyone one this board the very best with all the struggles they are going through. I have read so many stories and have cried while reading some.  There are no words!   My mom was recently diagnosed with stage IV, first diagnosed when her yearly mammogram came back with a mass and the biopsy indicated Melanoma. What a minute, what!!  She goes yearly for her mammogram and also goes to a dermatologist for yearly skin checks. How could this be?  No primary?  Guess it doesn't really matter at this point. Even though she was doing everything right and taking care of herself this happened. 

This all started in September of this year. In October she went to the Moffitt Center in Tampa to meet with the specialist and start more testing. CT! MRI and another biopsy on a lump on her back. This showed several spots throughout her entire body including one small tumor on her brain. They treated that with stereotactic radiation and we will go back in a couple of weeks. They want to wait 6 weeks To do a follow up MRI to see how it reacted. In the meantime she started with immune therapy, Keytruda which she is getting closer to her home at a Florida Cancer center. The Moffitt center is 2 hours one way and that is too much for her or my dad to do. I've been flying down when she has to go to Moffitt to take her. 

Before they started her on Keytruda this other center did a PET scan which showed more brain tumors. One of many concerns is that if these tumors are spreading so rapidly are we doing all we should be? The follow up at Moffitt isn't until Dec 13th. However they were sent the disc of the PET scan so they would have the results. 

She has had only 1 dose of Keytruda, the 2nd one is tomorrow and had some of the side effects from that one. I know everyone is different but is it safe to say that the side effects will continue with each treatment? 

FOr  all of you that have been through this. What would you suggest is the best kind of support that you've received or what would you recommend that has really helped you through your process?I wanted to start some sort of network with people in her area to help with meals or something  it's so hard living in MA  

Thank you for your feedback. I loom forward to hearing from you. 

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