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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Anonymous's picture
Anonymous
Replies 5
Last reply 3/18/2015 - 7:17pm
Replies by: Indiana82, jogo, Fen, yazziemac, dvd

Recently diagnosed (January 2015).  Tumor in parotid gland (salivary gland) turned out to be metastatic  melanoma. Had surgery to remove parotid gland (partial) and tumor (with clean margins).  No evidence of primary melanoma found (nothing on skin, eyes, throat, nose).  Clean brain MRI and body PET scans. NED. Going to Mayo next week for another opinion about further surgery and any possible adjuvent treatment.  This past week had a consult with a second ENT surgeon who wanted to remove 15-25 lymph nodes from the neck area near the original surgery site, but decided to wait on this after hearing my original ENT surgeon's thoughts on this.

Has anyone else had a melanoma in the parotid gland, and if so what has your treatment been?

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/20/2015 - 6:58am
Replies by: bonusfries, Anonymous

...whoever you are posing as this time:

Get the hell out off this board. Everyone here is dealing with a very serious illness and is not interested in any crap that you happen to be peddling.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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eric w's picture
Replies 4
Last reply 3/18/2015 - 3:22pm

Hi all,

 

My wife has had #14 doses of Mk-3475 and developed pneumontis. She just finished a two week course of prednisone and will get repeat CT of the chest area in a few weeks. Curious other folks experiences with pd-1 and pneumontis and associated responses. Thanks

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Thank you for taking the time to read this, I am having a real difficult time right now and am hopeing someone has some experience they can share with me on this topic.  I feel weird saying that because I find it uncomfortable wanting someone to have the same experience since I would never want my worst ememy to go through this, but I hope you guys will understand where my heart is coming from. My dad was diagnosed in December with Stage 4 Melanoma with mets to the brain (18 tumors) and lung (1 large tumor). He is 64 years old. He had Neurosurgery where they removed 14 out of the 18 tumors, the other 4 are too close to the brain stem to operate on. He had 15 whole brain radiations done. His biggest complaint is being fatiged, food not tasting good, and lack of sleep. He has been on Decadron and MD's have attempted to slowly wean him off of it. Every time he is off the steroids, his balance is effected (he has fallen) he becomes forgetful and has severe neurologic changes, requiring he goes back on the steroid, to give him the best quality of life. Has anyone had this experience? I know its bad for people to stay on the steroids long term, risk for infection etc. Will he be able to wean off successfully at some point? I imagine he still has substantial brain swelling (neurosurgery done on Feb 7th) if this powerful steroid (8mg) daily is being required. He is also on Yervoy recieved 2/4 treatments with no adverse effects. Thank you. 

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StephyD83's picture
Replies 7
Last reply 3/15/2015 - 10:17pm
Replies by: Anonymous, StephyD83, Mat, JoshF

Hi all-
This past week out of the blue the right side of my chin and bottom lip keep going numb on and off. It is the strangest thing. I am concerned as my melanoma was on the right side of my face. I have looked it up and all I can find is Numb Chin Syndrome. Basically days is a sign that cancer has spread. Have any of you experienced this or know about this?
Thanks!
Stephanie

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yazziemac's picture
Replies 2
Last reply 3/17/2015 - 8:23am

Hi all

Has anyone heard of using photodynamic therapy (PDT) to treat melanoma?  If so, what have you heard?  

Yasmin

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bonusfries's picture
Replies 5
Last reply 3/20/2015 - 7:04am

My initial diagnosis was July '13. Had a very high risk initial tumor (11mm depth, and raised from the skin too). Fortunately the WLE, SLNB and every PET scan (last one Sep 14) since then has been NED.

That was until vision problems led to an MRI 3 weeks ago. 2 brain mets, different lobes, with the visual problems being driven by one of them filling with fluid. The larger had swelled to about ping pong ball size, with the second being 1 cm. Minus the fluid they were both probably equal in size.

The subocciptal craniotomy went extremely well. Surgery on Tuesday and I'm back home Friday night at a pizza party for my son. A full body CT scan (CT only not PET) only showed that a subcutaneous node might be forming near my original site (lower abdomen), otherwise NED.

The next Friday after discharge, I had SRT performed on the second area - front right lobe. I am a math / science guy and was completely fascinated by this procedure and enjoyed every minute of it.

My lab results from the removed brain met came back BRAF positive. Our plan of attack is to start on the BRAF + MEK combo in the next 2 weeks.

So aside from the initial bad news in the ER that my melanoma had spread, this just seems like wave after wave of good news in terms of attacking it in the short term with quite effective methods. Long term who knows, and I'm a "glass half full" kind of guy so I'm not even contemplating my future. I feel like I have as good odds as I'm going to get in terms of beating it back right now, and hopefully keeping it back. I hope everyone dealing with this has the same encouraging news if you ever hit stage 4 also.

 

Stay strong

Jeff

 

Just do it

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jbronicki's picture
Replies 2
Last reply 3/14/2015 - 11:12pm
Replies by: JoshF, yazziemac

Hi all,

Just to keep the trend going, wanted to post about our news yesterday from MD Anderson.  Last year in February, my 48 yr old husband was diagnosed with Melanoma.  Believe it or not, he had a 19 mm (almost 2 cm) lesion on his upper left back.  Apparently, it had grown immensely in 6 months and my daughter noticed it while they were swimming and then he said it woke him up one night, felt like he was lying on a marble.  He actually never told me about it and I didn't see because he gets ready for work and leaves about an hour before I do.  So he went to a dermatologist up by his work.    I can still remember bursting into tears when I first saw it before his surgery and how I could have missed it.  He ended up telling me he had melanoma while we were watching a movie on Saturday night  and it finally made sense why that afternoon he told me where the life insurance policies were (I couldn't figure out why he was telling me where the policies were). I got on the phone with MD Anderson the following Monday after I had calmed down. The Saturday night he told me he gave me the path report the doctor had given him.    I had the path report (my husband actually never looked at it) and it had the highest ratings for everything, depth, Clark's, etc and all the prognostic factors were off the charts.  I was a medical librarian and I used to work with biostatisticians that work on outcome studies so I looked up the evidence-based research outcomes that night and knew it was not good.I got on the phone with MD Anderson the following Monday after I had calmed down and scheduled his surgery for the following week.  I also burst into tears randomly at work that week, it was pretty intense.

My husband has a scar almost across half his upper back, he actually went back to work the day after surgery.  The tumor had no skin component so our first appointment with oncology after the surgery but before the scans, they said he was probably stage 3 or 4 nodular melanoma (of course one of the most aggressive) and considered it metastatic melanoma.  SNB came back negative though and also his scans later that month came back negative. 

Just had our 1 year scans yesterday and they came back clear.  Never thought we would be here, still remember reading that pathology report and then researching the various outcomes with his numbers and breaking down.  Been a wonderfully hard year and we seem to live in 4 month increment, but hard to believe so far NED.  I hope we can pay it back to whoever needs it. 

Many hugs to all of you out there, I've been on this board for the past year.

Thanks,

Jackie <3

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clthomas2131's picture
Replies 0

Question..... has anyone had a vacora biopsy of a neck node? I had a fine needle, and was told they were going to do a core biopsy but they called to say I am getting a vacora biopsy done and I would be knocked out for it.... I can't seem to find much on it at all for neck biopsies.

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G-Samsa's picture
Replies 3
Last reply 3/13/2015 - 12:13pm
Replies by: arthurjedi007, Bubbles, Mat

I am sadly completing a successful 2.5 year run on the Anti-PD1/Ipi combo trial.  Although the visceral disease remains in-check, several mets have suddenly appeared and have taken hold in fatty tissue areas.  It's as if there are two distinct systems --- one in which the immune system is still effective at maintaining a tolerable tumor load, and one where it is beginning to lose its grip.  A reinduction of the combination drugs has been (after three infusions) unsuccessful at getting the immune system interested in these new tumors.   Although the new tumors are not life threatening, the doctors feel that it is important to have them removed.  The inaccessibility of the tumors (entangled with nerves, etc) suggests the need to "shrink and pluck", that is, reduce their size so that they can be surgically removed.   Since I am Braf positive, the outlined plan from the medical teamis to exit the trial and move me to a Braf/MEK inhibitor treatment regimen ( presumably it will shrink the tumors enough to be removed).  

Having been under the umbrella of a very effective treatment, I am clinging to my prior treatment like a cat on a cliff, and have expressed some reluctance to chase something not life-threatening, by forever giving up access to a treatment that has worked so well.  I've read many entries here about the limitations of the genetic treatment (that are typically effective for a limited period).  I've also heard it suggested that the Mel can sometime returns with a vengeance.  The doctors have talked me off the ceiling, indicating that together with the prior long-term immuno-therapy treatments, they expect the Braf/MEK to have a better long term effect, and indicate if it loses its grip, both ipi and anti-pd1 remain options (albeit as separate treatments)

Bringing this to the attention of the group for a couple of reasons--

I'd like feedback on whether this sounds like a reasonable approach (I believe we all have developed expertise fighting the disease -- and collective thought might be informative/supportive), also looking for experience/evidence that genetic treatment on top of immuno-therapy makes for a more durable response. I was thinking that I should suggest a set short-term use of the Braf/MEK, just to address the tumors,  hoping this would keep my powder dry, preserving the ability to use Braf/MEK at a later date if the critical tumors begin to stir.  

Thanks for your thoughts

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/13/2015 - 12:02pm

I've had four doses of PD1 and just had my first set of scans, there was some growth in a met in my spine and a new 9mm lung met and a new 1.3cm adrenal gland met. I have mets through body in the bones and in the lungs other than what I have stated everything else was stable ( no growth). Any ideas on what I should do from here, any advice would be helpful.

Thank You

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jag's picture
Replies 16
Last reply 3/17/2015 - 9:48pm
Replies by: jag, JoshF, Manfred, Anonymous, Kim K, yazziemac, kpcollins31, Brendan, Bubbles

After my 4th craniotomy, my neurosurgeon came in to tell my family that he had removed what would be the last melanoma metastases in my brain.  Up to that point, I had had 2 lung surgeries, 1 Video assisted Thorascopy followed by 6 rounds of biochemotherapy, followed by 4 rounds of interleukin 2, followed by a complete left pneumonectomy.  I went on to have SRS radiation (still got the tattoo on my forehead for the laser alignment) followed by a craniotomy when that didn't work, and 4 subsequent cranitomies (2 were double craniotomies) that is when they cut 2 holes in your head.  In between there was focal patch radiation where they create a cast for your face and give you blasts of radiation, I never lost my hair during chemotherapy, the radiation did it, I got married as a fat bald guy to the woman of my dreams (my backbone through all of this and to this day).  

Anyway, enough about that nightmare, there were good times too, trips to most of the national parks, the islands in New England, my cousin's wedding in Ireland, and even working at nearly every borough except Staten Island in NYC as a relief veterinarian.  It has been quite a journey.

Two more brain surgeries later (to clean up radiation crud), a year of not being able to drive due to seizures and Dilantin toxicity, I am now back on my feet and maknig up for lost time.  I am finally tapering off of my seizure medication.  

I was there for the birth of my son Jedd via invitro fertilization.  He is named after my oncologist (and personal hero-who I am sure to this day is as dedicated to his research and cancer patients as he always has been as he has been since he started-Dr. Jedd Wolchok.  Scroll down to the bottom of this article (that was almost 2 years ago on his 

 http://www.fredhutch.org/en/news/quest/2013-12/revolutionizing-solid-tum...

My wife  and I started our own mobile veterinary practice (she is a vet too.)  check it out.  I personally designed the sprinter procedure vehicle which has digital radiography, anesthesia for elective dental and surgical procedures.  Check it out:

www.gsvmobile.com

Anyway, now we are in the process of tearing down our old shack (Meredith and I bought it because she would be able to carry the mortgage on a 600sqft house-if I karked it (as NicOz used to say)) and are installing a n new modular home 3 times it's original size (1800 sqft)  Jedd made me do it as did adopting an early reitrement seeing eye dog last year on my birthday who put us over the edge.  We are renting a house across the street and hope to watch the demolotion and construction of it.  

Meredith was diagnosed with a primary melanoma (barely stage I) and I realized how difficult in can be to think of a loved one being sick.  She was a champion thoughout my whole treatment and was strong for her's too.

Needless to say, having cancer definitely got me used to big changes, being busy, and dealing with stress.  On my worst days I can say "At least I don't have my own brain surgery scheduled for today".  

In the meantime, I'm sorry that I haven't been here to help encourage people and direct them for the best treatments as much as I used to.  The only thing I can say in my defense is that my treatments (other than brain surgery) are virtually non-existent any more and I have been just a little busy .  My treatment strategy was in this order. Say your prayers,  Minimize tumor burden, get throughthe most difficult treatments early on-save the easy ones for when you are really debilitated stay.  Immunotherapy and surgery were the best ones for me.  Stay active and keep moving (I try to get in 10000 steps on my pedometer/day) -say your prayers again, hold hands with your best friend, and look both ways when crossing the street.  

I'd also like to thank the current melanoma "experts" i.e. patients who are experiencing their own treatments and passing on everyday advice to others.  Another resource I always found useful was google alerts.  I had one set for metastatic melanoma and one for brain tumor treatments.  You can set one up for yourself here-you will find out about the "cutting edge" stuff before your doctor does!

https://www.google.com/alerts

Another one when I was scanning for trials is

www.clinical trials.gov.

I am writing this to offer a bit of encouragement for all of you fully engaged in your own personal cancer battle-know that my prayers are with you and to say that you are welcome to e-mail me if I can offer any support:  I'd also like to say thank you to all of the caregivers as you are the glue that holds a patient together.  Some of them (my wife especially)are like crazy glue, which is fine-it is stronger even if smelling it makes you a bit dizzy.

I never though life would be going this well for me.  I never thought it would be as bad as it was when I was going through treatment either.  Either way, I still think of god everyday.  I don't know why I have been lucky enough to be writing this right now.  Hope isn't a bad thing.

e-mail: gallagherjohna@yahoo.com

 

Insert Generic Inspirational Motto Here

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/13/2015 - 5:23pm
Replies by: Fen, Anonymous, Bubbles

I am posting anonymously because my user name does not pass the MPIP spam filter.  My user name is a nickname for Richard followed by “_K” and oddly, there are times I can’t post anonymously even though I changed my user name.

Anyway, I recently passed my five year anniversary on Zelboraf.  Side effects limited to body rash, some foot discomfort, and photosensitivity.

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Bubbles's picture
Replies 3
Last reply 3/13/2015 - 9:18am
Replies by: kpcollins31, _Paul_, Mat

I know his op ed in the NYT touched many of you.  I felt lucky to find another piece he wrote before he passed.  Perhaps you'd like to see it too?

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/doctor-writer-father-cancer-patient.html

Live well. Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Replies 4
Last reply 3/15/2015 - 9:39pm
Replies by: Anonymous, jenny22

As a past user of this group (10 years stage 4 melanoma with Ipilimumab), I now need a good discussion group for prostate cancer in order to find the best urologist.

(I found my melanoma oncologist through this forum but cannot find such an active prostate cancer forum. There are few unfrequent users in the prostate cancer forum that I found. Can anyone recommend please)

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