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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Replies by: mombase, momof2kids, Lisa13, JerryfromFauq, Anonymous, ohwell, Swanee

Hi everyone, this is my 1st time posting, just joined TODAY!

I'm from Pittsburgh, PA, thankfully home of the Hillman Cancer Center & UPMC Presby, where I've got all my surgeries, etc done already.

Back in May 2011, I had horrible headaches, and my vision was getting blurry, for almost a month I dealt with it (thinking it was my birth control doing it, so I got off that), and it didn't stop. So, June 21st 2011, I went for a head scan, and they found 2 SPOTS on my brain.

June 21, 2011, I was in the hospital and and June 22, I had brain surgery to remove the GIANT ORANGE size spot above my LEFT EYE (which caused the blurry vision), and they left the small spot on the other side of my brain in (size of a quarter).

I was out of the hospital after a few days and the eye doctor called and said that my vision tests showed hugely abnormal distress, and said I needed to come back in and after a few more tests, they sent me to the hospital, to either get eye surgery or a Lumbar drain (which is what I got for 8 days over July 4th), as all the fluid was still up around my brain causing stress on the eyes.

So for 2 months, for all of July & August, I had to keep checking with the eye doctor , and luckily my vision is almost back to normal as of Sept 2011 and in July I had the Gamma Knife treatment (which I just lost my hair in both spots they treated, and for almost 2 months it hasn't grown back!)

Then my chest xray showed I had 2 spots in my right lung (1.3cm & 3.9cm) and 1 spot in my liver (4.6cm), which for 2 months went untreated while my eyes and head were recovering.

FINALLY Sept 2nd, I started 1st injection of YERVOY / IPI . No side effects yet except for some very dry skin on my head. I go for my 2nd round Sept 23rd at Hillman Center in Pittsburgh. This is my 1st treatment for my chest spots, and all I can say is I HOPE THIS WORKS to shrink these down.

I will go thru whatever I need to to stay alive for as long as I can. I've had a very difficult time with this emotionally, I break down almost everyday crying thinking about the future, just having a hard time dealing with all this, most my friends must think skin cancer is a skin only thing and it's NOT, hell even I had no idea before I got this, I had moles removed this winter, where is where they think this may have came from.

I'm 31 years old and have 2 kids, who are 6 & 2, and I want to stay on this beautiful earth for as long as I can to be with my kids!

I'm just so nervous about whether this works or not, I am not looking forward to IL-2, if I have to go to that, I'm BRAF negative.

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The Ultimate Systematic Combinatorial Therapy

ICOS expression,To secrete and what to secrete is the question. My research has taken me to the costimulators of the T-cell.   

The level of ICOS surface expression regulates the magnitude of the in vivo Th1/Th2 ratio, perhaps by influencing Th2 differentiation. 


The linkage between low ICOS expression and “early” cytokines, and between intermediate/high ICOS expression and “late” cytokines is intriguing and could mean that ICOS is gradually up-regulated in the course of progressing T cell differentiation.   

ICOS-low-cells were found to be loosely associated with the early cytokines interleukin (IL)-2, IL-3, IL-6, and interferon (IFN)-gamma. 

ICOS-medium cells, the large majority of ICOS_ T cells in vivo, were very tightly associated with the synthesis of the T-helper type 2 (Th2) cytokines IL-4, IL-5, and IL-13, and these cells exhibited potent inflammatoryeffects in vivo.

In contrast, ICOS-highT cells were highly and selectively linked to the antiinflammatory cytokine IL-10.

The strength of the effector response of Th cells is regulated by the control of ICOS expression.

Overall, this data seem to indicate that ICOS cell surface density serves as a regulatory mechanism for the release of cytokines with different immunological properties.

We want the low expression of ICOS which seems to differeniate the niave T-cells towards the TH1 T-cell phenotype. We can accomplish that with Yervoy  (Anti-CTLA-4). STAT5 signaling  is found in both the Th2 and Treg pathway.It just so happens Yervoy causes the  Phosphorylation of STAT5 to decreased significantly with increasing concentrations . Yervoy skews the T-cell differentiation towards the Th1/Th17 phenotype whick we want.

Blockade of PD-1 by monoclonal antibodies specific to its ligands (PD-L1 and PD-L2) results in significant enhancement of proliferation and cytokine (gamma interferon [IFN-gamma] and interleukin-2 [IL-2]) secretion by tumor-specific CTLs. PD-1 blockade also resulted in down-regulation of intracellular FoxP3 expression by Tregs.

So by do a combinatorial therapy with Yervoy and PD-1 antibodies, It would most likely have a synergistic immune response.

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Anonymous's picture
Replies 2
Last reply 9/24/2011 - 9:35am
Replies by: Anonymous

I just found out that Dr. O'day will NOT be working at Angeles Clinic any longer.

Does anyone Know where Dr. O'day is practicing medicine??

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lhaley's picture
Replies 8
Last reply 9/24/2011 - 9:26am

Nic's funeral is 10am Friday Sept 23rd in NSW as Jerry posted.  That is the same as 8pm, Eastern standard time Sept 22nd.  For those inclined note the time difference for your time zone and give her a thought, ring a bell or think of a memory. 

I'm sorry for the short notice, I mixed up the time difference.


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Kim K's picture
Replies 13
Last reply 9/24/2011 - 8:20am

I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

I also had to make sure they don't pull the "we can't give you your results over the phone and the Dr. is gone for the day" crap.  My doc was shocked when he heard they wouldn't tell me my results over the phone.  We already had a deal that it is fine to do so.  I mean it's not like because I am in medicine therefore I am being a pain, but rather, if there was something I would want to know everything PRIOR to my appt. so I can spend the time constructively developing a game plan that made sense.  I could spend the time more productively and have my questions lined up and research done PRIOR to my appt.  It didn't help that the receptionist at this particular branch office isn't the brightest crayon in the box.....

I will recheck next week to ensure that it is the first thing that shows up is my Dr.'s consent to read me my results over the phone and or fax them to me as soon as they are reported.  Damn stupid beuracracy.  My doc did get a chuckle out of my Mela-sucka-noma shirt.  (The one that BG has).

I also ran into my lung surgeon who seemed a little suprised I was still doing well.  If only I could be a fly on the wall at the next tumor board meeting.....

I also can't wait for my new Sole 35 eliptical machine.  Now that I will be around for a while more, I guess I need to get my butt back in shape.  Jade my 5 y/o daughter insists Mommy is only fluffy and not fat.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Anonymous's picture
Replies 0

Testing the new system

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Angela C's picture
Replies 3
Last reply 9/23/2011 - 11:24pm


I am 2 1/2 weeks out from my first dose of Yervoy. For the second time in a week now my cheeks have become very rosy and warm. My cheeks just feel hot like I just got done exercising, or something like that. I don't have a fever. Just wondering if this might be related to Yervoy. Has anyone else experienced this?

Be kind, for everyone is fighting a great battle. -Plato

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mom3girlsFL's picture
Replies 3
Last reply 9/23/2011 - 8:43pm
Replies by: Lauri England, TracyLee, Anonymous

Please know this "rant" is not intended to offend anyone.  I ask that you read with understanding and not judgement.

I am stage IIIC, almost one year NED.  Radical groin dissection with lymph node involvement, surgeries Sept 2010.  Clear PET November 2010, clear CT abdomen/pelvis March 2011.

Here are my feelings for today:

I am waiting for the phone to ring...or not.  I had a PET Monday morning and am awaiting the news.  I have never been more anxious over a scan than this last one.  Why?  I don't know.  Perhaps because I cannot explain the pains I've been feeling in my leg lately.  Or maybe I am afraid the aches and pains are due to mel.  Could it be there is more meaning behind the regular, almost daily, headaches I've been experiencing or is it stress?

In the past, the "no news is good news" has been the routine so I feel pretty good about not hearing from my onc so far.  I have always had the "bad news" immediately following scans.

So, am I driving myself crazy over the aches and pains in my leg?  How bout the headaches?  And when my scan comes back "clear" do I now label myself "The Hypochondriac NED"?  I don't want to sound rude, and I have always considered myself a strong person....but, THIS IS DRIVING ME CRAZY!!!!  My leg DOES hurt, the aches ARE real.  I HAVE been getting headaches, almost daily.  This is true, I'm not making this up - that's what I tell myself.  But what if it is not mel related, what the heck???  Ugh...whatever.

I guess all I know for sure is if the scan is bad, I will do whatever I need to do.  If the scan is clear I need some serious counseling.


Do not fear tomorrow, God is already there.

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For My Sister's picture
Replies 7
Last reply 9/23/2011 - 1:40pm

I did some searching & found that our dear Shari C passed away on July 13 in Chadron, Nebraska.  She was a Christmas day baby as well.  Such a beautiful spirit, maybe she was there at the gates of Heaven to meet my sister, Cheryl (May East) and Nic.  Also wanted to thank everyone for the kind and comforting comments regarding the loss of my sister.  You are all in my thoughts and prayers everyday.  Keep fighting the good fight, my friends. 

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justlittleoleme's picture
Replies 6
Last reply 9/23/2011 - 12:33pm

Just curious, we are scheduled for surgery next Friday.  In all the reading I am doing, BRAF seems to be an important item to know.  Did you ask for the testing or did your hospital test automatically?

We don't know how strong we are until being strong is the only choice we have.

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plaza's picture
Replies 4
Last reply 9/23/2011 - 11:48am

Has anyone had success using ipilimumab Yervoy, or what did you use that was successful?

My mom was on a clinical trial and was working well until this past month. She had to be off of the the drugs for three weeks for a surgery. Her scans came back that the tumor on her liver had grown but it is still smaller than it's original size. The ones on her lungs had disappeared and now they are back. Since they grew back she was kicked off the clinical trial by the drug manufacturer, which doesn't make much sense since she was having success on the medication. Now they are telling her about this recently approved drug by the FDA and was just wondering if anyone has had success. Thanks for reading and responses would be appreciated.

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ValinMtl's picture
Replies 12
Last reply 9/23/2011 - 11:45am

Hello everybody, I'm back.  I was going to post last night but sadly saw the news about NicOz and decided to wait.  May God be with her and watch over her dear young daughter.

I started Aug 18-22

cytoxan (chemo) IV for 1 hour on day -7 and day -6

   developed arrhythmia...need to see cardiologist now...hope it has kicked back in place

  You will be given Mesna through IV. Mesna protects the bladder from irritation.

fluderabine (chemo) not as strong day-6, day-5 and day -4, day-3

TBI (total body irradiation -if on that arm) day-3, day-2, day -1

   I have definitely had achy bones and still do.

TIL cells - day 0

IL-2 (Aldesleukin) - day-0, day +1,  day+2, day +3, day+4

       you received IL-2 every 15 minutes until your body can't take it...I couldn't after two treatments, kidneys were giving out.

When I did return to Montreal on September 10, I was back in the hospital with slight hullacinations.  These were straightened out...too many cross over on drugs? Back as home, I am slowly gaining my strenghth, I couldn't keep anything down for the longest time except except gatorade.  But I travel back next week for a review and hopeul it will show regression, let's pray.  I'll keep you posted.  As Warren says, one step at a time.  I'm still very sore and can't write that well but maybe in a month or so.  Soon as I hear results I'll let you know.  Val xx

Live Laugh Love Nothing is worth more than this day!

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benp's picture
Replies 24
Last reply 9/23/2011 - 9:41am


I was wondering if anyone knows if it is possible for foreigners (in my case, Australian), to take part in clinical trials held in the US? Has anybody here done this before? 



(Stage IV)

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natalieruth's picture
Replies 4
Last reply 9/23/2011 - 7:39am
Replies by: Anonymous, DebbieH, justlittleoleme

I was diagnosed with melanoma stage 3 in 2000.  At that time my MD Anderson doctor told me I would have to be monitored the rest of my life.  We have recently moved, and I have a new doctor (an internist who consulted oncologists on staff) who said the CT scan is no longer necessary and blood tests are all he plans on doing.  This scares me.  I have been cancer-free for 14 years.  Are any of you still being tested this long after the initial diagnosis?

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Jessmoon's picture
Replies 8
Last reply 9/23/2011 - 7:03am
Replies by: Anonymous, JoshF, Jessmoon, triciad, bblapril, Tim--MRF, eaca

My 35 year old husband was just diagnosed with metastatic melanoma with normal PET scan and sentinal node biopsy.  Yesterday we were presented with treatment options.  1.  Interferon or 2.  Enrolling in a study in which he would receive Interferon or Yervoy.  I am so concerned about the side effects of both medications.  Can anyone share their experiences with either medication? 

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