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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rabbits68's picture
Replies 14
Last reply 9/15/2016 - 12:22pm

After 17 months on Mek combo, it has outsmarted the melanoma. Scans showed progression back into the bones. So I am being put on the Ipi/Nivo combo. Anyone care to share experiences with those drugs?
I know God's got this and I keep thinking about a song that says Learning to Lean on Jesus. That is the only true source of strength.
Lisa

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Julie in SoCal's picture
Replies 12
Last reply 9/17/2016 - 1:14am

Dear friends,

Yesterday I talked with Rock Star Doc and while I still don't know the pathology of my tumor (path report hadn't come yet,) we have a workable plan.

Plan A is for me to enter the NY-ESO-1 trial (ID-LV305-2013-001) if my tumor expresses the NY-ESO1 protein (only 25% of melanoma patients express this protein). If I do not have the NY-ESO1 protein, then I will enter the JAK-1 trial (INCB 391101-107).  Either way, I'll start one of these trials next Wed.
 
Plan B is to try to enter a TIL / ACT trial and it will only kick in the event that I progress while I am on one of these Plan A trials.  It also assumes that I have enough tumor to qualify for the TIL / ACT trial Right now I have one 16mmx19mm lung tumor. The first evaluation of Plan A will be at 12 weeks after start, so I'm fairly confident that we'll catch any progression earlier, rather than later. 
 
Given all the unknowns, (and there are so many!), and all the limitations, this seems like a good way forward.
 
My process for making the decision was this:
1) freak out, pray, talk with friends and family, calm down, (breath in and out!!).
2) Learn about the science (read, ask questions, watch videos).
3) Research potential clinical trials on clinicaltrials.org, Search by geography, Download trial info and create database of possible trials. Figure out which trials I could possibly qualify for and exclude those that I don't. Having already had Ipi and Pembro automatically disqualified me for some.  Also being allergic to iodine (CT contrast juice) kicks me out of others.  
4) Read the proposals for this "short list" of trials. and keep praying, and talking to my friends and family (with more breathing in and out!!)..
5) write questions for Rock Star Doc based on "short list" search. This includes both general and trial specific questions.  Talk with RS Doc.
6) take leap of faith (God's got me!), choose one trial with a few back up plans and directions based on contingencies, continue to pray and talk with friends and family (continue to breath in and out!!).
 
I'm not sure this is the best way to go about making this decision, but it helped me create a sense of control and agency in the process, and this is critical for me to be able to go forward well.
 
Thanks for your help in this crazy process!
 
Shalom,
Julie
 
 
 
 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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JoshF's picture
Replies 19
Last reply 9/21/2016 - 9:57pm

At airport waiting for flight to Houston, which of course is delayed. The blood test showed liver enzymes dropped significantly. That was great news...thank God. Bad news is I went in patient portal and read radiologist report from scan last week. Overall impression with out getting into details was "worsening metastatic disease". That hurt because with the 3rd and last ipi dose being 8/8, I have to assume I didn't respond 2nd time around after having great response in 2013/2014. I feel like though we tried hard in past couple months...nothing has stopped this dreaded crap and therefore nothing got done.

So I do Ct scan tonight at MDA, see Doc Friday, Brain MRI Sunday and then get moving into treatment phase next week.

Not that anyone has crystal ball but what are chances something shows up in brain a month after gamma knife? I've bothered Kyle with private messages for the past week with this stuff...symptoms to look for etc...Either way they will need to ask for PI override. I need the cells and see if I can start beating this back. I know others have been in far worse places but it feels like I'm trending there. Believe me I want to fight but I need the treatment to fight with me. Yes I'm starting to feel desperate. Anxious to get to Houston and get show on road. Not sure if I'll be posting, I'm tired of all the sadness and suffering I read here but know that I think of and pray daily for all of you. Much love, support and healing to my MPIP Family!

Be well!!

Josh

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

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stotes's picture
Replies 4
Last reply 9/21/2016 - 3:34pm

I have Stage lV metastatic melanoma with latest scan showing one subcutaneous nodule and another tumor on my right glut max muscle.  Is it a bad idea to wait seven weeks to get into a trial for Opdivo plus epacadostat (IDO inhibitor)?  Or should I just start Opdivo alone?  I progressed from stage lll to lV while on Ipi and have to wait seven more weeks for it to be out of my system.  The trial is not randomized so I know that I will get the drugs.  I didn't choose watch and wait after surgery and radiation for stage lllC and now I regret it.  I feel like no matter what I do it ends up being the "wrong" choice and now I'm running out of choices.....  Christal 

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Buddy0513's picture
Replies 5
Last reply 9/17/2016 - 6:51pm

Hello everyone!

I am new to this forum and am posting on behalf of my mom since she isn't a fan of computers!

Anyway, it is a long story so I appreciate anyone who reads this.

 

Back in July of 2015, my mom had a vaginal polyp that was discovered upon post-menopausal bleeding. When it was removed and tested, it was positive for melanoma (no stage was given), which is apparently very rare. She went through surgial procedures to remove this polyp and was OK.

Fast forward to July 2016/beginning of August 2016, she had become very sick with symptoms similar to food poisoning. After going to the hospital, scans etc...they discovered a grapefruit size tumor on her ovary and smaller tumors throughout her abdomen region, nothing on any other organs (which was determined by a PET scan).

We were referred to an oncologist who gave the options of either ovarian cancer or melanoma, depending on the test results and biopsy. He also stated how he didn't see any of this being life-threatening since it has not spread to vital organs regardless of diagnosis. If she was to wait and avoid treatment it would catch up with her, but he tried to assure us it would be ok. At this time also, her CA-125 levels were 10x normal (about 390) and LDH was high as well (I cannot recall this off the top of my head). When the biopsy was completed, the results turned out to be stage IV melanoma and it was BRAF-negative.

When speaking with this same doctor, he did not refer us to a specialist (the hospital we are seeing does not have one apparently), he basically gave us the side effects of Keytruda and how poor it has of a performance (30% compared to 70% for the pill if she was BRAF-positive), and would not even provide a prognosis or even fall back on anything he had said at the previous appointment!  After mentioning Keytruda, he didn't talk about trials either should she not react to the drug. They have not provided any support and have submitted everything for insurance to approve, but we are still waiting to start treatment (this has been going on over a month now). This doctor also failed to write the correct place they took the biopsy due to the reasoning of "handwriting was too hard to read"...We honestly feel they just see $$$ rather than looking at my mom as a patient. 

We have decided to go for a second opinion as I have read here often on the site (with a melanoma specialist!). I guess my main question for you all is, what can I do to bring her spirits up? This has sounded like a death sentence to her and she is very down. I basically took a semester off of school and stopped my entire life to come help her, I told her I am not here to bury here I want to help anyway I can! We have not had any support since she was diagnosed (I have been sharing many stories from people on this website, especially the Charlie Stage IV roll call thread!), which has helped to some extent. Has anyone else here had any experience with melanoma on the ovary either? I haven't been able to find many stories similar to hers, all of the doctors she had seen are baffled which hasn't exactly been a great help either.

Thank you for reading, I appreciate any advice and support during this tough time.

Melissa

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Marilynliz's picture
Replies 1
Last reply 9/13/2016 - 8:32pm
Replies by: jennunicorn

I am just starting my journey. I am looking at either Wake Forest of UNC. I would also appreciate any oncologist recommendations. I actually live closer to the Hickory/ Mooresville/Statesville area but would be willing to drive the distance for comprehensive care. Any recommendations would be appreciated. Thanks.

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/14/2016 - 10:15am
Replies by: Hukill, Treadlightly

i recently had surgery to have a clarks level IV removed and just got the path back have not been to doctor yet since surgery but in my path report it says reperative changes consistant with previous operative site,lentigious,incidental findings, margin free . thats all it says what does this mean??? whats incidental findings

bandit1000

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Aida Ballesteros's picture
Replies 8
Last reply 9/13/2016 - 11:17pm

My dad had just being diagnosed with in situ melanoma on august, he got the mole and some good skin removed, but i am worried sick of the chances of the cáncer coming back as in a mole or something else, do you think we should make an appointment with a melanoma specialist for some extra tests? What are your experiences with in situ melanoma?

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Hukill's picture
Replies 6
Last reply 9/15/2016 - 7:12pm

My first 44 months(was supposed to be only 6 months) in the Army my face was exposed to radiation almost on a daily basis with plastice safety glasses as my only protection. Ten years later I had my first basel cell while still on active duty. That was in 2002 and until June of 2015 I had 15 basel and squamos cancers removed from my face area. In June of 2015 I had 2 melanomas, one on my forehead and a stage 2B to the lower left of my crown. The stage 2B took 3 surguries and I was left with a huge hole in the back of my head. The PET Scan was negative. On June 8th this year while drying off after a shower I felt a knot in my lower left neck and immediately I knew what it was. That was on Friday. Monday morning I called my onocology surgeon and he asked If I could come see him then. I live 3 hours away from Audie Murphy VA Hospital so I left to go see him. He scheduled me for surgury the next Monday and a PET scan that Wednesday. The Pet scan results came back before my surgury. The results were not positive on the knot in my neck but had multiple tumors in both lungs consistant with melanoma that were not there in my last PET scan a year earlier. The knot in my neck was matatisized melanoma. The diagnosis was stage 4 non-surgical mataisized melanoma in both lungs. I have had more than my share of horror storys dealing with the VA over the years but with my cancer they have been excellent. I am the first veteran at Audie Murphy hospital to receive the yervoy/opdivo combo mainly because I am the first veteran whose overall health was good enough to risk the side effects. The cost of these drugs for my treatment is $800,000 and had to be signed off by a finace board which only took 2 days. Within  a month of my diagnosis I received my first dose of drugs. I had my 4th and last combo on 9/9/2016. I now have 4 doses of opdivo then back to the combo. The VA has really came through on my treatment. Before my first treatment they gave me presciptions for steriod cream for the rash and steriod pills  that I could take if serious side effects developed but could only take I they told me to. I have been very lucky on side effects. After the first I did get a rash on my arms, chest and shoulders but only 3 or 4 spots itched and no burning. The steriod cream took care of the itch. I had a lot of fatigue the firat 4 to 5 weeks and ran fever for 6 weeks which is just now going away as it comes and goes. I took motrin every 4 hours to keep it under control. I did not have an appetite the first 4 or 5 weeks and lost 27 pounds. I tell people nothing beats the melanoma diet, all you have to do is wake up to lose weight. I have continued to work with usually working 3 to 4 days a week. I spent 3 days in the hospital running test for infection due to the fever but it was determined the fever was just a side effect and no infection. My dr did a CT scan at 8 weeks due to several chest xrays looking good. The scan had several tumors so small they could not determine if they were gone or not, 3 tumors were smaller and 2 were slightly larger. My guess is that 27 days passed between my PET scan and my first dose of drugs so I assume the tumors had continued to grow and have probably skrunk. I think I have been luckier than most on the side effects as I have been mowing the yard, and still doing all the things I did before my diagnosis. I am looking forward to my scan at 14 weeks.

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rabbits68's picture
Replies 3
Last reply 9/13/2016 - 12:01pm
Replies by: rabbits68, JoshF

I am now 17 months into Mek combo and have had very little issues until this month. Started as pain in back and legs that went away and now seems to be a little more persistent. After 4 days in a row, decided to call the oncologist. I am having CT and MRI, am praying this is nerve or muscle related and not bone Mets (which I had before). I know the statistics with Mek and am concerned it has stopped working, but it seems like a sudden onset. This makes me anxious.

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WithinMySkin's picture
Replies 26
Last reply 9/26/2016 - 10:46am

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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jenny22's picture
Replies 3
Last reply 9/12/2016 - 9:50pm
Replies by: Anonymous, jenny22

Hi to all, and Kerri in particular-

I found myself thinking about you, and Jake today......

Wanted to send good thoughts and HUGE well wishes for his scans tomorrow.  I am sure you must be having BIGTIME "scanxiety".

Keeping my fingers and all other bofy parts crossed for some good news for Jake.

Best,

jenny

 

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magnus31's picture
Replies 4
Last reply 9/10/2016 - 11:15pm

Dear all,

I am stage IV with two visible lesions in close to lung and trachea, respectively.

Ipilimimumab was the initial systemic treatment but I was switched to Nivolumab 20 months ago due to lack of response. Nivolumab has worked well and has shrunk or eliminated all dozen-or-so lesions visible initially.

I am now left with two lesions: A stable, smaller lung lesion and a 40 mm lesion close to the trachea which has grown 10 mm over the past 3 months. Doctors believe it does not respond to the Nivolumab treatment.

I have no pain or problems due to current illness.

I am now faced with the following options:

1/ Add in Ipilimumab to current Nivolumab treatment and see what bitjerapht could do

2/ Attack trachea lesion with cyberknife, continue Nivolumab

3/ Attack trachea lesion with cyberknife, continue Nivolumab and asd in four sessions of Ipilimumab

My primary concerns below:
- I have heard that radiotherapy can make illness more aggressive but then again cyberknife technically is something else.
- Will adding in Ipilimumab "confuse" my immune system which has worked so well with Nivolumab alone?
- Will going "all in" with all three treatments (Nivo + Ipi + cyberknife) be too much at this stage, as we can always revert to cyberknife at a later stage?
- If not opting for cyberknife at this stage, do I risk the lesion growing too large for cyberknife treatment further down the line?

I hope you are all coping well and thank you for sharing your thoughts.

Magnus

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jennunicorn's picture
Replies 15
Last reply 9/17/2016 - 11:12am

Had another PET/CT scan today. Good news: the lung nodules are shrinking, so no mel there!

But, there is a lymph node in my left armpit that grew 2cm (measures 2.5x1.0cm) and lit up (it never lit up before). SUV uptake is 7.7. Never had uptake that high before. Not even really famliar with what a "high uptake" is. So, question for the veterans that know this stuff... is that high? I'm not too worried about it, maybe I'll need a biopsy, who knows. Tumor board will review next Friday and I'll find out what they suggest. There's also a new left groin lymph node that grew and lit up but that uptake is only 4.2... still more than I've had before, but, compared with 7.7 it doesn't seem as concerning. I know PET scans can have false positives and I also know that Ipi can be creating more reactive lymph nodes, so, that's why I'm not really freaking out over this stuff. Also, when did freaking out ever help me? I'll tell you: never. :)

As always, sending lots of positive vibes to all of you, thinking about everyone going through their own struggles and roller coaster rides with mel.

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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