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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I'm fortunately a stage 1a - spitz melanoma pt  but since I was diagnosed 4 months ago (which as a 33yrs old newly wed I never thought I had to deal with, at this stage/age of my life), I keep my reading updated about melanoma and also have asked my family this year to forego Christmas gifts for me and instead donate to Melanoma research. I used to get my Christmas gifts as donations to "The Smile Train" foundation, but this year I switched. I encourage everyone to try it, for me it makes my Christmas gifts so much more meaningful than let's say a tablet or a Sephora gift card :) 

Article below is a good, albeit scary and sad, read for the latest stage IV immuno-therapies. 

Always sending thoughts and positive energy to everyone on this board and beyond that is fighting melanoma.

 

Immune System, Unleashed by Cancer Therapies, Can Attack Organs - The New York Times

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Has anyone found large spots after an recent infusion?  My Mom just had her 22nd Keytruda infusion and it so happens that a large round spot appeared after the infusion on her shoulder. The doctors never found her primary and her past PET scans never lit up here. I am wondering if anyone else ever had anything like this happen.  - A biopsy has been done.

Everything else is great with my Mom and the last sign of anything "new" was brain met (August of 2015) related to a reoccurrence from a brain met that was treated in 2013.

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/5/2016 - 10:05pm
Replies by: KMick

What does it mean when pathology says no evidence of dermal involvement on these stains?

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/3/2016 - 8:07pm
Replies by: Anonymous, Janner

I had an excision with a 3mm margin. Dermatologist feels I should have another excision with a 1 cm margin. Head and neck surgeons disagree and feel this is adequate even though 1 cm is recommended. If head and neck surgeon does it, he wants to do it right away but I read that it can be done in 3 month time frame.  

 

BBR

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JoshF's picture
Replies 9
Last reply 12/5/2016 - 3:14pm

So LDH went up more and now platelets were elevated. I think high end of range is 450,000 and mine was 488,000. I looked on this forum and everything is low platelet counts...anyone know anything about elevated platelet counts?

Josh

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

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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
Anonymous
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.

Thanks,

Juan

Juan

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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.

scooby 

 

 

 

 

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MichelleRHG's picture
Replies 7
Last reply 12/5/2016 - 9:35am
Replies by: MichelleRHG, brewgirl68, Fen, Anonymous, jennunicorn

Hi, 

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. 

Josh

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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