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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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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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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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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KPorter's picture
Replies 3
Last reply 12/4/2016 - 11:26am
Replies by: brewgirl68, Anonymous, Janner

I just had surgery to remove a Lymph Node from my groin. At first the surgeon was leaning towards Lymphoma. During the Pathology it was discovered that it wasn't Lymphoma yet Melanoma. I don't have any black spots or moles anywhere on my body. No physical signs of Melanoma. The only thing I had was a swollen Lymph node. Now he's sending me to an Oncologist for a PET scan to see if and where it might have came from. I'm in very great health ( Haven't seen a Dr in 5 plus years. The last time I went was at 40 for a physical. Before then couldn't tell you). The only way they discovered it was through chemical test. Is this common or rare? Don't know what stage or the size of it or the depth of it? Any help, suggestions, or any information would be greatly appreciated, Thanks

 

KPorter


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lmccann2016's picture
Replies 4
Last reply 12/3/2016 - 9:44pm

Hi everyone some of you know me. So i will quickly let others know my situation. Stage 3 melanoma

Initial tumor was 4.7 mm depth 2cm vertical. Mitoic rate 7 margin clear by 0.3

Had wle and found 2.9mm more same tumor not reoccurance.

Had neck discetion as primary back of neck and had 4 out of 40 nodes cancer but still intact.

Treatment recommended

Everyday 5 weeks radition
1 year interferon

Or radition and clinical trial pembro/interferon

However i have 98 days from surgery to get clinical trial and do radition however i have an ooen wiund on neck due to infection and need it to heal by dec 16.

So if not healed should i skip radition go straight to clinical trial and if i dont get pembro stop trial do radition and then do 1 year interferon.

My neck is still healing and hoping infection oa gone however i still have hard areas on neck which i am concerned about. I see oncoligist surgeon on tuesday ..

Any advice on this would be good.

I would rather not do radition as i know sode effects esoecially on neck can be bad.

Thanks

Lisa

Lisa McCann

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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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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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WithinMySkin's picture
Replies 27
Last reply 12/3/2016 - 1:55pm

Hello all my fellow fighters! I feel as though we've had some seriously tough times lately. Reading through the board can be so difficult some days because my heart hurts when there is bad news. I know the flood of emotions that you all go through, and I'm right there with you. The stress, the anxiety...I've been there, and I will be back there soon with my next scan in October (fingers crossed for good news!) But I wish I could reach out and hug every single one of you who are going through a tough time right now!

 
So I started thinking. How can I help? How can I make this situation better? I know a lot about my own anxieties, but how can I help other people feel less anxious about what we're all going though?
 
Then it dawned on me. I have worked for almost a decade in the operating room as a neurophysiologist and an anesthetist. That's what I really know best, and for most people surgery is terrifying, even though it's really quite normal for me. So let's start there.
 
What scares you the most about surgery? What do you wish you knew about general anesthesia or the O.R. that would help calm your nerves? What questions can I answer for you all? How can I help?
 
*Please refrain from asking questions specific to your condition. I don't know everything and I'm not your doc, but I'm always here to give you an internet hug! And if you don't want to post here, you can always reach me at my blog.
 
Hope all is going well in your battle and keep fighting!
Lauren
 

WithinMySkin

www.Withinmyskin.com

 

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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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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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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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jms0104's picture
Replies 1
Last reply 12/2/2016 - 4:38pm
Replies by: debwray

Hello again,

i had a WLE under local anesthesia a couple weeks ago.  I since developed a hematoma at the site of the incision along with blood/bruising in my abdomen from the internal bleeding.  My stitches are out and I'm still bleeding and swollen and am wondering if this is normal.  The doctor (a melanoma specialist) didn't think much of it, but I'm questioning why I shouldn't have this drained.  

 

Cheers

jay

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Anonymous's picture
Replies 6
Last reply 12/2/2016 - 2:19pm

hello everyone,  we are in northern california.  my husband is stage IIIb. we have had SLNB and CLND done already (chose the most experienced surgeon around our area) and are now getting ready for adjuvant therapy and are deciding where to go.  any experience / input would be greatly appreciated.  our choices are:

Stanford Hospital - Dr Sunil Reddy (closest to us)

UCSF - Dr. Adil Daud 

CPMC in SF - Dr. Kevin Kim

thank you kindly

 

 

 

 

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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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