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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aussiewoman's picture
Replies 11
Last reply 6/24/2014 - 3:59pm

Hello. Have you faced this problem? I have stage IV, just diagnosed with 2 lung tumours - a 16mm on a lung lymph node and an 8mm lower in the lung lobe.

They're both theoretically resectable.

Here's the question - do I cut them out ( I LOVE cutting cancer out, it's my #1 favourite thing to do to it!) or embark on the Yervoy path and hope I'm one of the 30% who's tumours slow?

What if I have surgery and more tumours arise elsewhere? Aside from the primary site (conjunctiva) recurring like a mad thing, I also had two tumours in a paraspinal muscle - removed last month.

Ideas? Decision paths? Have you faced the same thing and how did you decide what to do?

Thanks X 1000.

 

 

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ncdaniel's picture
Replies 9
Last reply 7/16/2014 - 11:52pm
Replies by: lbkimball, ncdaniel, Bubbles, Anonymous, NYKaren, RJoeyB

Can anyone provide any information on treatments of brain mets with PD-1?  I am aware that Yale University is just starting a study with patients who have brain mets ,  but my question is has anyone seen any prior evidence or prior experience that PD-1 does address brain mets? Any information will help. Thanks, Daniel

Trust in God - Live one day at a time

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Hello folks. It's (thankfully) been a while since Ive been on here, but as of late, I hadn't had a need to worry. But...in the last few weeks, I've noticed some obvious regrowth at one end of my scar, it's a very raised, blueish nodule... Also, the lymph node right under my ear has almost doubled in size just over the weekend. (ear being primary site) Please read my profile for more primary info.

My lesion began as "severe atypia", but with a 'differentail diagnosis' of Level 2 stage 1A.... HOWEVER...

I did not get a thickness until AFTER the initial biopsy, AND the full excision. So when I finally got a thickness from the path report after the 3rd report, of .8mm, it has already been chopped up twice.

Possible it could have started as a greater thickness? Possible surgical-enduced spread?

They did not deem SLNB necessary at the time, but now I wish they had.

What else could this be? Should I be worried?

 

I am seeing my primary family doc tonight.

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Leslie'sHusband's picture
Replies 3
Last reply 7/13/2014 - 8:03pm
Replies by: Leslie'sHusband, GAngel

I've been kinda quiet here for a while.  Les and I have just been living life, and trying to keep a positive outlook on things.

After 8 weeks and 3 days, we were finally able to get back to Duke to have the drain removed from her thigh this past Friday.  It seemed like it took forever for the drainage levels to drop off enough that it could be removed.  Part of the laproscopic lymph node removal trial involves measuring her legs for swelling, so she's sporting a fresh set of reference marks for the measurements.  Just to keep the mood light after the nurse (Kara is an awesome nurse!) removed the 12+ inches of tubing from her leg, Les said "Look!  I have a blow-hole!"  Kara said, "Yeah, but I don't think you'll be breathing out of it."  Never missed a beat.

Anyway, we head back down next month for a PET scan, so we'll probably be dealing with a little 'scanxiety' soon.  The upside is that she will have the scan and we will get/discuss the results same day.

Dave

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Hello MPIP Community Members,

The MRF has been invited to serve on an Advisory Board in Atlanta, GA on Wednesday, June 25th. We would love for a caregiver to join us. The attendees will be diverse (advocates, patients, caregivers and nurses), and we will be focusing on areas of unmet need for melanoma and lung cancer patients. With this Advisory Board, the pharmaceutical company we've been invited by will be working to:

  • Refine their understanding of the education and communication needs within the patient and caregiver community
  • Ensure that their patient experience program as well as accompanying educational materials are best-in-class
  • Tailor nursing educational materials and a peer-to-peer nursing speakers program to addresses the unique user needs of the community-based practice

If possible, we're looking for a caregiver who:

  • Is currently a primary caregiver for an individual diagnosed with metastatic melanoma
  • Assists an individual with all of the following tasks at least 2/3rds of the time:

o    Obtaining, refilling, or administering medications

o    Providing transportation to/from physician appointments or other healthcare appointments

o    Speaking with doctors and/or other healthcare professionals on behalf of a or melanoma patient

o    Evaluating cancer treatment options for a melanoma patient

  • Is currently receiving or has received help for their patient from an advocacy organziation or pharmaceutical company with education, emotional counseling or finacances

If this sounds interesting to you and you are available to travel to Atlanta on June 24th for an all-day meeting on June 25th, please contact me directly at smoneer@melanoma.org or at the MRF office at 800-673-1290. An honorarium, as well as all travel and meal expenses, will be paid. 

Thank you for your consideration and I apologize for the last minute request. 

Sincerely,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/17/2014 - 12:12am
Replies by: Anonymous

As I was watching the U.S. Open golf tournament yesterday and Martin Kaymer was running away with it, they mentioned the recent passing of his mother “due to complications from skin cancer.”  She died from melanoma, and I just wonder why they use the terminology “complications from skin cancer” on the national broadcast, instead of saying “melanoma.”  It seems like an opportunity to educate the viewing public.  I don’t know, maybe I’m reading too much into it or being too picky.  When well-known people die of cancer, the media usually says “colon cancer” or ““stomach cancer”. . not “complications from metabolic cancer.”

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Jewels07's picture
Replies 4
Last reply 6/23/2014 - 9:31am

I had my surgery on 6/12/14. The orginal plan was to remove 2 lymph nodes in my arm pit (sentinel and 1 more) and also do the WLE. I went in for the dye injection and by the time the surgeon read it, it was changed to WLE and 2 more incisions for a total of 4 lymph nodes removed. (not in my arm pit either) This makes me nervous! The mind goes crazy places with this diagnosis. I'm waiting on the biopsy results to come back and it sure isn't any easier than the 2 months waiting for the surgery. I have a bad feeling but am trying to stay possitive. 

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FayFighter's picture
Replies 13
Last reply 6/19/2014 - 12:12pm

Hi Team,

I posted early May regarding my 44 y.o. husband who went from 3c to 4 after a PET showed lesion new stomach (3.5 cm) end of April 2014.

Quick recap:

july 2010 melanocytic nevi Lower left calf excised (later in 2914 reread by mskcc as melanoma in situ)

derm exams/6 mos

June 2013 small nodules by excision (we had no idea we should be looking for anything like this and thought it was a vericose vein)

July 2013 bump in groin. Biopsy shows it's melanoma.

Mid August 2013 lymphadenectomy (5/19 positive) and excision of lower leg nodules.

oct 2013 start yervoy and gets all 4 cycles.  Colon issues require heavy prednisone and 2 remicades.

radiation of lymph basin nov/dec

january 2014 tumor profile NRAS pos BRAF neg

march 2013 finally tapering of prednisone

April 2014 pet shows lesion in stomach (3.5 cm) and little nodule in groin and at lower left calf.

may 21 start anti pd1 and KIR trial. 

Yesterday shortness of breath, severe fatigue land us in ER 

CT show stomach now 6cm, probably oozing.  And possible left lung nodule. Labs show iron deficiency anemia, low hbg and low hct. This is probably causing fatigue and shortness of breath. 

Today started Iron and we meet with research doc weds. 

so, what do you think he will say?  Give the anti-pd1 a little more time?  Get on mek inhibitor?  Just so worried right now. We have a 6 y.o. Boy and 8 y.o. Girl.  We thought we would get to fight for a bit but now we feel pretty low. 

help. Thoughts.  Suggestions welcomed.

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Ginger8888's picture
Replies 6
Last reply 6/29/2014 - 11:42am

Was wondering if anyone has heard of this and if so how much to you have to eat? I don't like it but if if works i'd be willing to force myself to eat it..I'm stage 3 C currently on Yervoy..

http://www.edenprescription.com/Okra.html

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Hello all,

I am Casie, a 2.5 year melanoma stage 3 survivor. I was diagnosed a week after graduating from college. I went through a wide excision, lymph node removal in my right groin and the interferon treatments. Since then, I have come up with a way to give back to people currently going through what I went through.

I have a website, www.wear-awareness.com and I sell stylish, comfortable melanoma awareness and other cancer awareness t-shirts. The awesome part is that $8 of each shirt goes back to cancer fighters in the form of care packages. 

Please check out www.wear-awareness.com for great cancer awareness t-shirts AND nominate someone to receive a care package full of gift cards and other goodies!

Thanks,

Casie 

Owner of www.wear-awareness.com

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Janet Lee's picture
Replies 4
Last reply 6/19/2014 - 11:20pm

Hello all,

I've been catching up on some of the more recent posts here regarding responses to PD-1 and other issues. We were at Mass General today to finally start the MK-3475. Don's start has been delayed by stomach, bladder, and intestinal mets, surgery, and blood loss presumably caused by anti-clotting medication that he is on because of a blood clot. (And that's only in the past couple of months!)

When the nurse in the infusion center brought in the little bag of MK-3475, I started to cry. Tears of relief that Don is finally getting a chance at this immunotherapy. He's been through so much, and is so thin, frail, weak, and nauseas.

What we learn from each other here on this site is still, to me, truly incredulous, helpful, and inspirational. Thank you all for sharing.

Janet Lee

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Greg - kyle's dad's picture
Replies 3
Last reply 8/8/2014 - 3:54pm
Replies by: CHD, Anonymous

My son Kyle (Stage 3C, 4 years NED) recently moved to Colorado springs.  We are looking for a recommendation for a melanoma specialist.  I've heard that UC Boulder has a good melanoma center.  Can anyone recommend an oncologists there or anywhere near Denver/Colorado springs?

Thanks,

Greg

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Different and interesting angle to fight cancer in this phase I trial.  From the article it sounds like it's available in Louisville and DC.

http://finance.yahoo.com/news/advanced-cancer-therapeutics-enters-phase-140000001.html;_ylt=AwrBJSAHrJ5TsFwAWtSamolQ

http://www.clinicaltrials.gov/ct2/show/NCT02044861?term=NCT02044861&rank=1

 

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RJoeyB's picture
Replies 3
Last reply 6/20/2014 - 12:11am
Replies by: RJoeyB, jmmm, odonoghue80
I've been lurking for a long time, replying to others for a few weeks, and wouldn't you know it, it's time for me to ask my own questions with my first "new topic" post ;-) Not necessarily any specific questions, but interested to know others’ experiences and perhaps share a little of my own experience in this aspect of melanoma that may benefit others. My details are available in my profile, but the highlights are that I've been Stage IV since my diagnosis in July 2010, participated in TIL and IL-2 trials at NIH, had a full course of ipilimumab at my home hospital here in Philadelphia, along with 7 surgeries, and 6 rounds of radiation, mostly SBRT, and including a brain met, craniotomy, and CyberKnife SRS about 15 months ago. I've never been officially NED, but have had a couple of 6 month stretches where you could say I've been close. But my focus here is on the brain met, and following my most recent brain MRI yesterday which is the first time I've had less than stellar results since the brain met was originally treated in early 2013.
 
So, specific history of the brain met and subsequent treatment (I copied this part from a section of my recent CaringBridge blog that I posted for my family. I made some modifications, so hopefully it doesn't sound too disjointed or state too much of the obvious for our more educated melanoma crowd here)… When the brain met turned up, it was first found on a regularly scheduled PET-CT scan, which I get every three months. We know that PET scans are notoriously ineffective at catching brain tumors (because the whole brain lights up naturally on PET), so an annual (now every three month for me) brain MRI is (was) also part of the standard monitoring for melanoma — at the time of that PET scan, my annual brain MRI was scheduled for later that same week. Whether the tumor itself or the associated swelling were so large or significant, however, it was the PET scan that caught it first, even though the scan just three months prior had been clean in the brain. Shaped like a walnut and 2.5 centimeters (about an inch) across, it was a moderately-sized brain metastasis for melanoma. The swelling appeared in a plane across a large percentage of the right hemisphere of my brain. The swelling and resulting pressure on normal brain tissue is usually the cause of side effects, whether physical or cognitive. In my case, the tumor was in the right side of my brain, in the area responsible for left-side motor control. In the six weeks or so prior to finding the tumor, I had experienced some symptoms, including a left side limp and two instances of focal seizures in my left arm. These were all masked by the fact that I'd had prior surgeries on both, a full replacement of my proximal left humerus and a tumor excision in my left femur, so they seemed like things just perhaps “acting up” (a strange coincidence that was just repeated a second time, I'll get to that in a second). No pun intended, but despite the symptoms, a brain met was the last thing “on my mind” going into that set of scans. Immediately following the brain tumor diagnosis, they started me on the steroid Decadron (dexamethasone), and within days I was walking better, even prior to the surgery.
 
The tumor was found on a Thursday, I was admitted immediately and started on Decadron, had an MRI the following day, consulted with the neurosurgeon, and once stabilized with the steroid, allowed to go home for a few days prior to surgery. Five days after the diagnosis I had the craniotomy, following which my neurosurgeon felt good that he had removed as much of the visible tumor as possible(recognizing it only takes one cell for the tumor to live on). First night was spent as a standard in the ICU, second night in a regular room, and two days after the craniotomy, I was able to go home. As brain surgeries go, I can't imagine it could have gone any better, I felt great after. Of course, typical after such a procedure, since the surgical margins in the brain are so small, I received radiation. In my case, it was CyberKnife, a form of “stereotactic radiosurgery” or “SRS” — basically highly focused radiation targeted at the tumor “bed” along the edges of where the tumor had been. Whole brain radiation (WBR) was offered and considered but not recommended, at least for my specific situation. The SRS was done about a month following the surgery, a single session of CyberKnife, and also went well. Again, the tumor was about 2.5-cm. Once the surgery and radiation were completed and the swelling had fully resolved, there was a small empty cavity left behind, perhaps 7-mm, where the tumor had been. This was expected and has remained completely stable in every scan since then — yesterday was the eighth brain MRI I've had since the surgery 15 months ago — the area has often been described by my radiation oncologist (who we love) as “pristine” after each scan. (I like hearing my brain described as pristine. And although I know the context and intent, I'm less fond of reading a radiologist’s report describe my brain as “unremarkable” ;-)
 
Fast forward to this year, where strange timing comes into play again. I had a small 13-mm lung met treated with 5 sessions of SBRT in February, asymptomatic and a relatively easy treatment. In March was my regular 3-month brain MRI, again “pristine”. In April was my regular 3-month PET, including a first look at how the lung met was doing — already responding, decreased size and lower SUV. But a bone met in my left tibia that had been radiated three years ago was showing signs of increased activity after three years of good response and stability. Rather than re-radiate, which is generally not preferred, my orthopedic oncologist operated about 4 weeks ago. I had a similar procedure on my left femur in 2012: incision, drill into the bone cortex, curettage (“scooping”) of the tumor out from the inside of the bone, burr the inside surface of the cortex, fill the defect with bone cement, and then resurface the cortex with artificial bone graft. The majority of the tumor was necrotic (all black as they'd expect a melanoma tumor to look) from the prior radiation therapy, but with some pathologically confirmed new growth. Relatively straightforward procedure though. It was outpatient, recovery went well, I took it easy the first few days, was back to work 5 days after surgery and on crutches for a week (mostly precautionary since I could bear weight on it even as I left the hospital), and started taking gentle walks of a couple miles in the park two weeks after. Pain has steadily decreased, the incision has healed well, and the bone graft will be replaced by new bone growth over a 6 week period. Some mild pain still when ascending stairs, but not a surprise given that a one inch hole was drilled into my bone less than a month ago. Regular walking on a fairly level surface is pain free and has been for over a week. Where it starts to get interesting is that even when the pain subsided, I couldn't shake the limp, as if I was dragging my left foot to move. I figured it was a result of having had to favor the other leg for several weeks and again, it had only been a short time since surgery, so assumed it would subside, but it just hasn’t seemed right. Other small interesting things, odd small motor control issues in my left ankle and foot, but again, figured it would all improve pretty quickly. Otherwise, no pain or seizures, but given my prior history, in the back of my head, I knew I needed to mention it to my doctor following my MRI yesterday, just in case. I warned my wife that I was noticing this, that I wasn't too concerned, but I didn't want her to be surprised when I brought it up at our appointment.
 
Yesterday I had my brain MRI in the morning and saw my radiation oncologist (who did the CyberKnife 25 months ago) in the afternoon. I'm so thankful to be at a facility that turns around scan results to the doctors the same day. This was MRI #8 since the craniotomy, every two months for the first 6 months and every three months since, all perfect. (Funny, in hindsight, yesterday everyone from the MRI tech to the radiologist who read the images to folks in my radiation oncologist’s office were all acting a little “off”, not overly concerned, but it seemed like there was something going on — could just be me, though). Long story short, after explaining to the nurse and then my doctor how I've been doing, including the recent limp issues after surgery, and the fact that I've managed to finally take off the 50 pounds I gained after the craniotomy (steroids, appetite, and being overly sedentary) by improving my diet and getting more active, she confirmed that I wasn't crazy (at least in this particular regard ;-), that there was something new going on that we hadn't seen in any previous scans.
 
That “something” is either regrowth of the excised original tumor or radiation necrosis around the original tumor cavity. We knew radiation necrosis was a possible complication before starting SRS. As explained to me (and I've verified through my own research in the past day), symptomatic radiation necrosis occurs in approximately 10-15% of patients who receive SRS for brain mets (with or without surgery), and the number may be as high as 50% taking into account asymptomatic necrosis that is never reported. To clarify, the 10-15% doesn't mean that the other 85-90% have tumor recurrence. But when necrosis happens, onset is typically 6 to 24 months following treatment — I'm at 15 months, so squarely in the middle of that range. I still find it odd that onset can lag treatment by so much, but I understand that’s how it works. Differentiating necrosis from tumor is extremely difficult without directly examining and testing tissue, there are some techniques using forms of MRI and PET that have been tried but not proven all that reliable. Edema (swelling) can result as easily from necrosis or tumor, so that is not a good indicator. If symptoms can be managed, it seems early observation is the first step. Quick upside, no new lesions elsewhere in the brain at any point, including this scan.
 
That's where we’re at now. I've started on a lower dose of Decadron. I was on it for about two weeks around the time of the craniotomy (along with Keppra for anti-seizure) and tolerated it pretty well. I was wired and could eat like no tomorrow (cheesesteak for breakfast, anyone?), plus my blood glucose took a hit, but I slept relatively well, and probably leaned more towards euphoria than agitation; not manic, but it was more of a mood enhancer than depressor. The hope is that the motor symptoms in my leg resolve relatively soon, and then I just need to keep a keen eye out for other symptoms, including other motor control issues, seizures, vision changes, headaches, etc. The site is right in the area for left-side motor control, though, and despite the symptoms prior to the craniotomy, I didn't require any physical therapy following the original surgery (although I was warned it was a possibility). 
 
I'll remain on the steroid until the next MRI, which at the latest will now be in just six weeks. My radiation, medical, and neuro oncologists will all be talking this week to confirm and it's possible they'll decide to move the MRI up or take another approach entirely, but my sense is that this will be the plan. Following the scan, if it looks relatively unchanged from yesterday’s scan, we’d likely stay the course and continue to monitor with future scans and also try to decrease and eliminate the steroid and see how I respond. If there is no new growth or slight growth but the edema or motor symptoms remain, we'd continue the steroid and possibly consider something like Avastin. I'm aware of Avastin for treatment of several cancers, including a family friend with glioblastoma, due to it's anti-angiogenesis (blocking the development of new blood vessels) properties, but didn't know that it could also be used to manage radiation necrosis, although I've now read a number of sources that mention it. It sounds like radiation necrosis, for lack of a better phrase, can often “settle down” and stabilize as the growth subsides, but sometimes requires something beyond steroids to bring it under control.
 
The worst case is that either the necrosis becomes too aggressive or the growth turns out to be new tumor. Either would be indicated by more rapid new growth and could likely require another surgery — necrosis vs. tumor wouldn't be known until pathological testing of what's removed after the surgery. Frankly, and this isn't trying to be a tough guy, but having done it already, a craniotomy doesn't frighten me all that much. I've been sliced, diced, poked, prodded, drilled, injected, poisoned, and zapped so there's not much that can be done that hasn't been done already. Not to say there’s no anxiety involved prior to any such treatment, but it's certainly easier the second time around with anything (except spiders and snakes which fortunately have not been part of any treatment protocol, at least none that I've had). 
 
We (the “royal we”, my wife, daughters, and I) are handling this O.K. The shock of my original diagnosis and 2.5 years later the discovery of the brain met were toughest. I'm monitored so frequently, I go into scans with the same “scanxiety”, but I'm better at managing it (lots of new practice with mindful meditation and breathing exercises) and honestly, while anything can happen, I less expect to hear devastating news with a scan. Bad news? Always a possibility, but I don't expect to suddenly hear something akin to, “There’s nothing more we can do.” The bad news could always be the start of a snowball that eventually gets me to the worst case scenario, but we still have a number options left in our pocket to try.
 
So that's where I'm at. I'd like to hear from anyone with similar experience of new localized activity at some point following SRS (with or without surgery) as a result of either radiation necrosis or regrowth of the originally treated tumor. I'm less interested in study results unless they significantly contradict what I've written here. I've read many in the past 24 hours and they seem to be in pretty close agreement with what I've been told and read elsewhere, e.g. the 10-15% occurrence rate, 6-24 month onset of necrosis, and difficulty in telling necrosis apart from tumor regrowth. But if you have something significantly differing from all that, please share, and of course, any similar experiences and how things progressed for you are most welcome. If not, hopefully this recent experience of mine can add to the compendium of experiences available here and help educate someone else. I'll of course try to update as I move through these next several weeks.
 
Best,
Joe
 
 
 

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