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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JoshF's picture
Replies 7
Last reply 6/24/2016 - 12:05pm

Well things continue to creep along. I'm almost a month out post surgery. I've got a long week coming up at MD Anderson. I'm entering the Phase 2 trial of Adoptive Cell Theraphy combined with low dose IL-2 and ipi.

I found out today that my blood tested positive for HLA-A201. I had already knew I was HLA-A2 positive but needed a higher resolution blood test for the 01. I also tested positive for the Mart-1. So I'm scheduled to have CT Scan, do cardio work up, see doc and leukpheresis done on Thursday. I'm also going to see surgeon to have tumore harvested in hopes they can create TIL's in the event that I need it in future. I certainly hope not but after dealing with this for 5 years, you just never know. It's the damn roller coaster Maria talked about in earlier post. Not to mention that any ache or pain is related to the crap that lurks in my body. I'm praying this is another complete response for me that is DURABLE!!!! The key word that eludes so many of us.

Thank you to everyone who has chimed in with support, information and just genuinely caring for each other. It's difficult to relay to friends and family unless they've been in our shoes. You always hear....stay positive, stay strong etc... well that's another battle we all fight. Who doesn't fight to be positive or stay strong and fight through this...we all do but I'd be lying if I told you the darkness doesn't creep in. Everyone means well and I hold nothing against them but coming here I know everyone deals with much of the same so like I usually do, I give thanks for all of you. Be well.

Josh

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

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scpage's picture
Replies 5
Last reply 6/24/2016 - 11:42am

WLE and SLNB completed yesterday....results in five to seven days.  Oncologist indicated that should the results be positive, I will require more surgery to remove all the lymph nodes from the area where the SLNB was performed(right arm pit).  But.....is that my only option???  Am I wrong in thinking that before we remove those lymph nodes, that maybe we should be looking for cancer elsewhere in my body, and develop a plan to treat that?

I sincerely appreciate any advice you can offer!

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Anonymous's picture
Replies 3
Last reply 6/24/2016 - 10:40am
Replies by: Janner, Anonymous

I also hear that moderate or more cases highly Atypical moles carry a risk. What is the risk of Melanoma forming in a normal moles?

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BrianP's picture
Replies 3
Last reply 6/24/2016 - 10:12am
Replies by: Bubbles, BrianP

This might to be the next generation of CAR T-cell Therapy. 

https://www.newscientist.com/article/2094832-first-human-crispr-trial-gi...

Sounds like it may be going to phase I soon.  I searched CRISPR on clinicaltrials.gov and nothing came up. 

Did find this trial that is not yet recruiting but seems really interesting as well.  Anyone out west looking for a trial might want to contact Dr. Ribbas' office to see if it might be starting soon.

https://clinicaltrials.gov/ct2/show/NCT02775292?term=ny-eso-1&rank=2

Brian

 

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Happy_girl's picture
Replies 1
Last reply 6/24/2016 - 9:59am
Replies by: Bubbles

Hey everyone! Well- needless to say I am terrified right now.  The dr office just called and said they saw a tiny spot near my kidney- too small to do anything with.  I have been stage 3a for 2 years.  I am panicking that this is melanoma.  Could it be something else? 

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Maria C's picture
Replies 6
Last reply 6/23/2016 - 11:05pm

Hi all,

I've been thinking about everyone here lots this past week and am so very grateful to have this community to turn to. I've never been a fan of roller coasters - their extreme ups & downs are like torture to me - but that's what melanoma has felt like during this past year since my June 2015 diagnosis. I'm on this crazy ride and I can't get grounded.

A week ago today, I "celebrated" my 1-year mucosal melanoma dx with my first craniotomy. Here's a recap of the Ride Down to that step:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-pa...

Ride Up: Very happy to report that the surgery went spectacularly well in that I have been in zero pain since waking up and am still 100% "me" - my husband says I haven't missed a beat. I still have my lion's roar and exercised it the moment my family gathered around HOURS LATE after recovery because they followed the hospital rules that said no visitors until everyone arrived (I have 4 20-yo's!, all traveling separately from CT to NYC). Who taught them you have to follow every hospital rule?? Not me!!

So here's how it went down - my second opinion at Sloan with Dr. Gutin, a highly experienced neurosugeon with the same first name as my dad (Philip!), was characterized by an urgency that we need to move fast to get my tumor out. That was last Monday, he squeezed me in his schedule for last Thursday, and THEN on the day of the surgery, he pushed the operation up from 1 p.m. to 10 a.m. after viewing the pre-op MRI. It turns out the 4.3 cm mass contained a 1 cm tumor that escaped the gamma knife treatment and kept bleeding and growing. The anticipated 4-hour surgery only took 2 hours, and again, I woke up in no pain at all. Needless to say I am thrilled to have been in Dr. Gutin's care.

But yesterday I left the first follow-up appointment with my new team at Sloan feeling deflated. It was really just an info-gathering session as I get on the team's radar as a new patient (Fridays are their team meeting days). There is still urgency because of the 2 new brain mets from the June scans, which of course indicates that the disease is progressing, and fast. While the oncologist commented that I don't look or act like someone who has my stage melanoma, he did make a comment that I have "uncontrolled brain mets" and mucosal melanoma is particularly aggressive. Putting two & two together, I am freaking out.

It's so unnerving, as I feel like my brain is jiffy pop and I don't know when another "pop" will take off and take me down with it! 

Again, so very grateful for this community, and for this particular day when my favorite childhood friend will be bringing me a pot of ginger-chicken-meatball soup from my ever-growing anti-cancer recipe trove...

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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wifeofron's picture
Replies 3
Last reply 6/23/2016 - 9:32pm
Replies by: jennunicorn, wifeofron

Is it normal to run a low grade temp and feel like one has the flu after a WLE? 

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Toby0987's picture
Replies 2
Last reply 6/23/2016 - 4:22pm
Replies by: youngann, Anonymous

I'm 3b since 2013, had a small bout of pap thyroid cancer but had it ablated and now that is gone. I'm at mayo and doing watch and wait. Went for my 6 month pet in April 2016 and radiologist called me at 9pm and told me to get to er because he thought I was having an appendicitis. I told him I was staying the night across the street from mayo hospital and have no physical symptoms of appendicitis. I went to my Mel onc the following morning and he said it may be a smoldering appendicitis but wasn't sure. He had me come back for another pet in 2 months (June 2016). My LDH in my blood work went from 185 to 222-still in limits but 225 is top normal (I think it is LDH-whatever the tumor marker test is) well did the pet last week and the lymph node next to my appendix is down in size and my white count is back to normal (I had a cold last pet). But my appendix and area around it shows pet activity still. Dr said it is not as bright as Mel normally would show but said he couldn't rule it out. He said he couldn't do a fine needle because it is bad to perforate the appendix. He referred me to the general surgeon there and surgeon said in so many words-melanoma has been known to go to a persons gi tract before but she didn't know either. She also wasn't sure if it is appendicitis then why is it still active after 2 months and there are no symptoms of appendicitis. My Mel onc is supposed to call me next week/the gen surgeon said maybe an elective appendectomy if it doesn't resolve itself. So what do you think. The Mel onc (dr mcwilliams) is open to my thoughts and will shape care based on my wishes. Do I insist on surgery? Let it marinate? Do another pet in 3 mths or 6 mths? Ultrasound? Any other ideas? Head in sand? I'm 42 and in shape. 

 

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ecc26's picture
Replies 6
Last reply 6/23/2016 - 9:04am
Replies by: Bubbles, Maria C, ecc26, Polymath, Mat

Having been removed from the clinical trial Frday afternoon and sent home with discs and reports, I took both to my local oncologist's office first thing Monday morning. On my way out I stopped by the Radiation oncologist's office to let them know what was happening and that images/reports would be uploaded into the system for viewing soon. They happened to have had a no show, so the put me in for a quick appointmet, went and got the discs to view at least quickly, then after the appointment took them back to be scanned.

I expressed my desire to get an appointment ASAP for Gamma Knife, but also my understanding that this might not be possible for a week or so given scheduling. They said they would get in touch with the facility and see what they could do.

Yesterday around noon I had the follow up with my local medical oncologist that had been scheduled before my trip to Boston. We discussed when to get started on the back-up plan (Ipi + one of the PD-1's in combo), tossed around ideas of waiting until after the brain mets were treated vs possibly starting before. Steroids were a factor in the conversation related to whether we would wean off first or go ahead and start since I didn't yet have an appointment for Gamma Knife. No real decision was made, but the general thought was that it would be ok to start on the higher doses with the steroids, then as I am weaned off steroids, perhaps reduce the dosages of the drugs (especially Ipi) to help reduce possible side effects.

After that appointment, I got the call from the Gamma Knife facility- they made an extra appointment on a day (tomorrow) that they don't usually do treatments to get me in. I was not expecting that at all. Called my medical oncologist to let him know, and got a quick answer that we would start infusions on Monday. Waiting on a follow up call from him today with a few more details, but in general pretty happy about how quickly things have moved along. In the process of shuffling things at work (meetings, etc) to make sure things get covered appropriately for when I need to be out for things, and hoping I get some success from these drugs that I've already failed without a lot of side effects. Have to try.

-Eva

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Anonymous's picture
Anonymous
Replies 8
Last reply 6/22/2016 - 1:44pm
Replies by: Anonymous, DZnDef, Ed Williams, jennunicorn

My sister had an in-situ several years ago and I am confused by the advice her dermatologist.  He said with her skin type to try and get some sun exposure everyday.  He claims that vitamin d is crucial for the skins immune system.  I believe she only gets 20-25 minutes of sun a day. Has anyone ever heard of this ?

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Gene_S's picture
Replies 0

This is a great website that has a lot of comparsions info about drugs and comments from patients taking them, There are a lot of comments from this forum group. 

https://treato.com/Melanoma/?a=s

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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LibbyinVA's picture
Replies 7
Last reply 6/21/2016 - 8:18pm

I know many look to this support site for positive messages. So I'd like to share that this year, 2016, is my 10-year NED anniversary...not bad for someone who was told in 2005 to "get my affairs in order." I remember that time like it was yesterday and it was a terrifying. In early spring of 2005 I was diagnosed with stage IIIb metastatic melanoma. My prognosis was grim...6-9 months, 12-months at best. Well, here I am and it's 2016 and I am doing great.

If you are where I was in 2005, please remember you are not a number. You are a person and no one is born with an expiration date stamped on them. Use the Melanoma Research Foundation site to educate yourself about melanoma...this site has everything you need so take full advantage of the excellent services offered here.

Also, seek treatment at a designated melanoma center. If you don't have one where you live, find one and go there. Look into what clinical trials could offer you. Please don't say no to being part of a clinical trial until you have at least taken the time to learn about them. Find a doctor who will take the time to answer all your questions no matter how many questions you have. You want to be an active participant in your care.

Trust me, it's well worth the travel and extra effort involved in seeking care at a designated melanoma treatment center. I can only speak from my own personal experience but in my case I firmly believe that it made the difference between life and death. I traveled to New York and participated in a clinical trial under Dr Anna Pavlick at the NYU Clinical Cancer Center's Melanoma Program. Deep down inside I know she saved my life. 

I sincerely hope my story will help other melanoma patients stay strong and hopeful. A melanoma diagnosis does not mean you've been given a death sentence. I personally know countless stage III and IV people who are alive and well 15, 20 and even more years following their initial diagnosis. Miracles do happen...I believe I am one.

Two of my favorite sayings relative to melanoma are, "I have melanoma but melanoma does not have me" and "I am living with cancer, not dying from it." Feel free to claim one of these slogans for yourself or come up with another one. Whatever you do, just don't give up!

Feel free to respond, disagree or ask me questions. You are not in this alone!

LibbyinVA

I have melanoma but melanoma does not have me!

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laulamb's picture
Replies 6
Last reply 6/21/2016 - 3:08pm
Replies by: ilikepralinen, fortiz, MoiraM, KimberlyVU, Anonymous

Hello,

How do you know if your melanoma is BRAF postive or not?  Should it be on the pathology report when they removed the sental lymph nodes and wide area excision? 

Thanks!

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FromPerth's picture
Replies 5
Last reply 6/21/2016 - 3:55am
Replies by: Patina, Anonymous, DZnDef, MoiraM, desertsun

Hi all,

I have been reading a few posts and thought I would share my own story.

I am a 35yr old male from Perth, Western Australia. I was recently diagnosed with Stage IV melanoma.

It started almost 2 months ago when I discovered a lump under my right armpit. After ultrasounds and a biopsy I was told I had metastic melanoma. The lump was an enlarged lymph node.

I then went to have a PET scan which confirmed I have a met on my left thigh. My biopsy also confirmed that I am BRAF positive.

This week I start my first treatment of ipilimumab and nivolumab. I have been placed on a clinical trial at Sir Charles Gairdner hospital. I have read some promising results from this trial, but I am not getting ahead fo myself.

I will try and keep this updated on a regular basis for anyone who might be going through the same thing. 

I try not to let my thoughts wander into a negative space, but I guess in situations like this it cant be helped.

Good luck to everyone else out there going through the same thing.

 

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