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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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
Anonymous
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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pianogurl85's picture
Replies 1
Last reply 12/1/2016 - 12:20am
Replies by: Janner

Hello,

I recently had a spot removed off of my back that was mildly dysplastic.  The plastic surgeon that removed the lesion didn't have clear margins and wants to remove more.  When I called my dermatologist's office, they told me that they typically don't need clear margins if the mole is not malignant.  This is the first time I have ever had a biopsy come back that wasn't clear and I wanted to see if the information I was given by derm is correct.  I certainly don't want to leave anything on that could end up turning into melanoma at some point. 

Thank you in advance for your time!

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Sebastian's picture
Replies 5
Last reply 12/1/2016 - 12:21pm

Hi.
Today I should have 3rd dose of nivo/ipi but one result of my blood too high. A get Prednizon 80mg per day to back to normal results of my blood. But I need to wait for 3rd dose. I worry because treatment worked very good on me, and now I scare that tumors will be grow up again... someone have similar sytuation?
Please reply

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Anonymous's picture
Anonymous
Replies 9
Last reply 12/5/2016 - 10:35pm
Replies by: Terrified, marta010, Anonymous, cancersnewnormal

My husband of 38 years  had a  malignatn melanoma removed from his scalp in February 2015. 2.2 mm depth invasion, no ulceration. Had wide local excision after first excision with no residual tumor and sentinel lymph nodes negative. Followed by dermatologist with only benign nevi removed periodically. Chest XR and blood work normal. Was an active 59 year old, lifting weights,walking five miles a day, working full time. Then three weeks ago, began to have night sweats,fatigue and back pain. Went to PCP, chest XR suspiciious for "nodules", then Chest CT, abdominal CT, Head CT and MRI, pelvic /spine MRI. Mets to liver/lung/bone/brain/spleen. Then two weeks ago hospitalized for hypercalcemia, had liver biopsy confirming melanoma, gamma knife to brain lesion. One week ago started on Mek and Taflinar as BRAF V600K mutation  positive and thought too sick to get ipi/nivo.

We see the oncologist again in two days. He seems slighlty better in that he has started eating again  (around day 2 of meds) He has a large tumor load and this feels as if it just exploded inside him. He went from totally normal  3 weeks ago to losing 25 pounds, now gets winded walking from couch to toilet, and in pain from hip/compression fractures/rib mets, etc. When he is not in pain, he is sleeping. Is this our new normal? Do the meds just prevent progression until they fail or do they cause regression? I know that some people feel better right away. Because he is on day 8 and still so sick, does this mean this wont work?

He is the love of my life and I don't know what to do.

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Skunkwheez's picture
Replies 0

Just to update those that have helped me so far, My Dad had his PET scan and it's clear! The only thing that lit up was on his head where his surgery was which they said is common. For new ones to the board, he had a 4.6 mm in the scalp. SNB biopsy was negative and PET is negative. So no cancer for now.  Follow up scan in 3 months but until then gonna try to get back to our new normal. Thanks again everybody.

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SOLE's picture
Replies 6
Last reply 12/2/2016 - 6:05am
Replies by: Carole K, debwray, Gene_S, SOLE, Linny

I meet with my «new» oncologist later today and will discuss about this clinical trial

https://clinicaltrials.gov/ct2/show/NCT02656706

The beauty of this is, after talking to one of the lady responsible for it, it does not require CLND!

And my platelet disorder could be accepted if everything else is fine according to her.

It would require me to travel a lot from Montreal to Providence in the next 6 months but that is secondary at the moment since the other option I have here is... interferon!

My questions to you

1) Who pays for the drugs since I am a foreigner? Do you guys in the US pay anything at all for the drugs while on a clinical trial?

2) What do clinicians conducting trials usually as of patients in terms of follow-up? It does not say anything here in terms of scans or blood work. Is it implied? I'm asking this because I want to know if it is at all feasible to be 7 driving hours (or 6 flight hours approx) away from the hospital.

Your advice is deeply needed and any impressions or suggestions are welcome.

I think I begin to understand what «being your own advocate» means...

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STage 4 survivors tell their stories here (over 2 years to like 10)  http://melanomainternational.org/events-webinar/patient-experience-video

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Carole K's picture
Replies 7
Last reply 12/2/2016 - 6:16am
Replies by: Carole K, Rocco, DebbieH, SOLE, Anonymous

Hi Everyone,

Someone posted below asking if there are any long term survivors. Yes, there are several long term survivors .  I will post on my fb page and on the fb Melanoma pages asking them to come here to check in.  One is Kathie K, David from Wi, Debbie H, and there are more.  I will do my best to get them here.  They are all awesome people.  I saw Fen replied to your post as well as Janne.  Both are a huge source of information.  Hang in there..  

Love and Light

Carole K

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/30/2016 - 3:37pm
Replies by: Ed Williams

https://www.statnews.com/2016/11/23/cancer-patients-fda-juno/

Interesting article with implications of new treatments / agency decision making / knowledge sharing or management and implications of the election...

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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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Hi Maggie,

I check on here from time-to-time and I haven't seen you for a bit.  I'm hoping you are okay?

Thinking about you...

All the best,  Laurie

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