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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RJoeyB's picture
Replies 1
Last reply 11/22/2014 - 1:35am
Replies by: DZnDef

There were a few articles about this yesterday, but MSK's own blog had the most reader-friendly one, I think.  Very interesting reading.

http://www.mskcc.org/blog/new-findings-clarify-how-immunotherapy-works-and-why-some-people-it-doesn-t

Joe

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/21/2014 - 10:23pm

I'm wondering if anyone has had any experience with severe itching after IL-2 treatment. It has been almost six weeks and my dad is not getting any relief.  Nothing has helped so far (gabepentin, Benedryl, cold compresses, etc...), it's maddening. Any suggestions?

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arthurjedi007's picture
Replies 2
Last reply 11/21/2014 - 1:02pm
Replies by: arthurjedi007, RJoeyB

I just wanted to make sure that since Keytruda is now FDA approved the EGFR requirement during the trials no longer applies. That's the thing that says if I have to be out and about in a wheelchair then I can't get it because I don't have a EGFR of 0 or 1. Although I can still walk a couple minutes.

Basically since I can walk across the room ok but to be out and about I need the wheel chair because I can't walk very far I got turned down by NIH. Which that is ok to me I think I would prefer the nivo/antilag trial instead. Fortunately I figured as much so it was just over the phone. I also figured that so I cancelled the Chicago trip.

But since Keytruda is still working pretty good for me I wanted to make sure I can get my 10th dose Tuesday even not being able to walk too good.

I checked http://www.cancer.gov/cancertopics/druginfo/pembrolizumab and it doesn't seem to say anything about it so I assume so but I dunno.

It's weird cause a month ago I was walking 2 miles a day fine. So I dunno what is going on with this leg and hip. Otherwise I'm doing normal for me. I haven't heard from the doc yet except he wanted me in NIH and to hold off on trying to fix the walking so if I don't hear from them over the phone I'll sure hear something when I'm there Tuesday.

Artie

 

 

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jennifer83's picture
Replies 3
Last reply 11/21/2014 - 9:50am
Replies by: Teochasse, _Paul_, DZnDef

Hello all,

I had the WLE and SLNB yesterday.  I live in Southern California and am lucky enough to be able to have my doctors and procedures through Hoag Hosptial - incredible facilities and even more incredible doctors and nurses.  

The lymph node mapping took place in the morning.  My husband went with me, and to be honest, he hasn't really understood the impact of this entire thing.  I feel like he, without saying it, thinks it's 'JUST skin cancer..."  But he sat with me as the injected the radioactive dye and stuffed me in a tube to take the photos for the mapping.  I could finally sense his concern at that point.  I teared up in there - the reality of it all is scary.  

My surgery was later in the day.  I went to sleep, woke up, and was sent on my way.  I stayed home the following day from work (today).  The removed a lymph node in my armpit and it is very sore.  My back has twinges of pain from the incision site.  I have yet to shower and remove the original dressings.  I'm still deciding on whether or not I'm going into work tomorrow... 

Now we wait for results.  My surgeon said he hopes to have them by Monday - the waiting is the worst.  I'm optimistic that everything will come back cancer free!  Thank you all for reading and the support... 

Jennifer

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DZnDef's picture
Replies 2
Last reply 11/21/2014 - 12:34am
Replies by: DZnDef, Anonymous

I have loads of moles. No idea how many.  For the past few months many moles on my torso along the sides changed in texture.  Instead of feeling like the rest of my skin, they became rough and dry and almost scab-like.  While lying in bed, I absently scratched at one and it came off in my hand.  No pain, no blood.  Normal skin underneath.  A few others felt similar so I checked in the bathroom to make sure they were really moles and not something else.  Yup, those were my moles.  I peeled off four more the same way before I hit one that was a tad sensitive so I left the rest alone.

I'm already Stage IV with lung mets so I'm not overly concerned about any of these being melanomas, just curious if anyone else has experienced something like this and what it might mean.  I don't see my oncologist again until January.  It's not the first time this has happened with my moles.  The first time I was a teenager (I'm 49 now).  Then it happened again about ten years ago.  And now this is the third time that I can remember.  Anyone have any insight?  Has this happened to anyone else?

Maggie - Stave IV (lung mets unknown primary) since July 2012

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csellers23's picture
Replies 3
Last reply 11/20/2014 - 8:12pm

After a week of so many downs we went to Vandy yesterday and got nothing but good news! The number they look at to see if there are less cancer cells Idk what its called is down and that being sleepy can be because of yervoy and the fever he had is good it means its working and its only his first dose. They said he will get to feeling better and gave him some meds to help him eat. Thank God and all just in time for our sons first birthday. We really needed this good news.

Crystale sellers

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_Paul_'s picture
Replies 3
Last reply 11/20/2014 - 2:48pm

I am very fortunate to work at a company that is committed to looking after its employees. Several weeks ago I had a lengthy call with a "Benefits Analyst" from our HR department outlining the various options that are available to me for short-term, long-term and life insurance. I was sent a form to complete and I noticed a little check box labeled "Terminal Illness". After another call I was told the insurance carrier, Cigna, provides an "Accelerated Benefit" on the life insurance that pays 50% of the policy if the subscriber is deemed to have less than a year to live, while he or she is still alive!

Of course I applied since the conventional outcome for Stage IV is less than a year. My doctors had to send in some paperwork and low and behold, Cigna approved it and paid!

My hope, of course, is that I live longer but the money is mine to keep regardless of how long I live. I just thought I would post this as maybe it will help another Stage IV patient. In my case I can pay down a bunch of outstanding debt and still have enough left over for my wife and I to go someplace nice and have a nice just-in-case cushion.

On a completely unrelated note, are there any of you that have Diabetes? I am on Yervoy (I get my last bag in a week) and it has inflamed by pituitary. My onc wants to treat this with steroids but I have been told that can significantly spike my blood glucose. I am type II, but recently had to go on insulin because oral meds could no longer control it (coincidentally about the same time I started the Yervoy). Have any of you been in that situation? I will be discussing this with my endocrinologist, but it would be great to hear of actual experiences.

Take care everyone!

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ABELL's picture
Replies 3
Last reply 11/20/2014 - 10:08am

Hello Everyone,

My best friend lost her battle today. 4 months after a stage IV diagnosis and a ten year battle with various forms of cancer. She died in her home, with her family around her & thank God for morphine, not in any pain.

I salute all of you fighting this terrible disease. I will forever be a supporter of melanoma research & will do my part to help find a cure. I promise this to this wonderful woman so many people lost today & I promise this to all of you... Keep fighting, and for the ones we lost, may you all rest in peace.

I love you Tam. You will forverer be in my heart and soul, the sound of your laughter will never fade.

Love always,

Manda

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eturner's picture
Replies 4
Last reply 11/20/2014 - 9:34am

Hi guys,

I wanted some opinions on what direction we should take next as far as treatments go for my husband. Here is a little background.... My husband has bone mets on just about every vertebra ( two are broken L1 and L5) sacrum, ribs, femur and on skull, three mets on lung ALSO has very small dark area on liver and kidney.  Last Nov and Dec did 2 weeks of IL2 (failed) then on to Braf Combo drug for about 5 months (failed) started IPI in Sept and just completed that (while on this LDH has DOUBLED :( ..... We are thinking PD1 would be the best bet for him but is there anything else?? ANY ADVICE IS WELCOME!! THANKS!!

EMILY

 

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Patina's picture
Replies 4
Last reply 11/20/2014 - 8:16am

I wanted to share more good news with everyone.  My Mom, who was diagnosed last year with stage IV and brain mets, got the news today from her neuro oncologist. He says that everything looks great with her brain and has given her the OK to start driving in December - unless something unexpected, like a seizure, occurs. - All she wants to do is to start driving again and she is thrilled!

Earlier this month her oncologist said that based on how she has responded to Yervoy (very quickly & all tumors) he believes that she is firmly in the group of people who, at 5 years, had needed no other treatment.  - 92% of responders with durable long term responses, after 5+ years of tracking have had no other treatments and the 8% who needed additional treatment seem to respond to Keytruda ,as well as or better than, they did to Yervoy. So, we know the next step if one is needed.

We can't believe how lucky she's been from the diagnosis to the misdiagnosis to the treatment results. It's been less than a year since she began treatment and just a year since she was diagnosed and we are all very grateful for the terrific doctor's she's had and Yervoy and gamma knife.

I wish everyone had these results now, but am sure they are just around the corner.

 

HISTORY:

My Mom was diagnosed in November of 2013 (age 77) and after seeing 4 specialists (one of which diagnosed her with brain mets that a radiologist "overlooked") and thinking about the options she opted to go with gamma knife radiation for the 3 tumors we knew about and began Yervoy/ipi 4 days later.  - On December 9th, the day of gamma knife, she had 8 treated, but a 9th which was thought to be blood vessels was in reality a brain met and not treated.

In short she had: 2 infusions, got colitis and thrush, had a few hospitalizations due to colitis, finally got the 3rd infusion, got colitis again and then a new radiologist (3rd) treated 17 new tumors in April...   

No seizures, no cognitive dysfunction and EVERYTHING is still shrinking or gone...with no new brain mets and those that were treated are stable and some much smaller or seemingly gone.

---Terrific treatment at USC in Los Angeles with Dr. Wong and Dr. Chang.  

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/19/2014 - 8:08pm
Replies by: JoshF, Anonymous, JerryfromFauq

I've been Stage 4 for a little over a year. I did Interleukin and went into remission earlier this year. I had a scan a bit ago and the doctor told me I had a shadow but it was infection which the reading radiologist confirmed. I've been struggling ever since as I think I have something wrong with me. I spoke to doctor and he was understanding but also said growth wouldn't happen overnight. I was asked if I have a cough, trouble breathing, chest or back pain. I complained of itchy throat. That could be from many things but I do always have funky ear drainage, stuffy nose and allergy type symptoms. I'm just so nervous and want an chest xray but don;t want radiation. My primary said this could be psychomatic coupled with post nasal issues etc.. What can be symptoms of lung metastasis? I feel fine physically but mentally I'm struggling....anyone else go through this? How do you cope?

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

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mike potthoff's picture
Replies 10
Last reply 11/19/2014 - 6:21pm

I was diagnosed today with subungual melanoma.  Started in my finger nail and now recommending that they remove 1/4  of my thumb.  Does anyone know of a cancer center in the US that specializes in this type of melanoma?  Scary for me...four young sons and have always been healthy

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