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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JoshF's picture
Replies 14
Last reply 9/26/2011 - 12:54pm

Hi All-

I was diagnosed in April with Melanoma. I had gone to dermatologists in the past and went earlier this year because of a small lump in my right cheek and to have my skin checked. Skin looked good and he felt ilumpp in cheek was a cyst and left it to me as whther or not I wanted it removed. Well I had it removed and suprise....melanoma!!! Intially, the pathology reports suggested metastatic melanoma but after many skin checks and pet scan we were still baffled. At this time my aunt found Dr. Richards who gathered all information, path slides etc... and determined that I most likely had a case of primary dermal melanoma...not metastatic melanoma. To be sure he ordered a sentinel node biopsy to be performed at the same time they were doing the wide excision in an attempt to obtain clear margins. They were able to obtain clear margins and lymph node biopsy was negative. That was almost 6 months ago and this disease has me terrified. It was just so unusual when you think of melanoma. Anyone ever heard of something like this? I required no treatment but have stayed on aggressive follow up with dermatologist and Dr. Richards. I will have CT Scan next month.

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

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kness's picture
Replies 6
Last reply 9/26/2011 - 9:09am

On monday I was diagnosised with melanoma. I had a moke taken off of my chest. It came back as a clarks level 3 and 1.5 mm. Soooo.... I have surgery scheduled for this coming monday. All of this is new to me and I am not sure exaclty what it means. Does clarks level 3 mean stage 3? Does this mean it has spread to any other places... I just need to know what this means, what most likely will happen, what to expect - ANYTHING that can help ease my mind - because right now I am scared!

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KatyWI's picture
Replies 8
Last reply 9/26/2011 - 2:38am

Two weeks ago today, I went to Madison, Wisconsin, and completed my Ironman journey.  No - scratch that - I raced, I struggled, and I triumphed.  I finished my 2.4 mile swim, 112 mile bike ride, and 26.2 mile run in 12 hours, 38 minutes, and 22 seconds, right about the top quarter of the field.  Beyond healthy - I was unstoppable.

Friday, I went back to Madison for my 3-month scans.  While I was training over the summer, even while I was enjoying one glorious Sunday two weeks ago where everyone makes you feel like a rock star, mm was growing.  If brain mets were bad, leptomeningeal mets are worse.  It looks like I have at least three spots on the brain lining, plus a new one within the brain.  The met in my left breast that IL-2 knocked out appears to be growing again, too, but that's the least of our concerns at the moment.

The immediate plan is to start whole brain radiation as soon as Monday.  After I finish that, Dr. Albertini and I will figure out what to do next.  He mentioned re-inducing ipi; he's had some people have success on Temodar.  Then there's the intrathecal route, like Amy did.  Or studies - some don't exclude leptomeningeal disease if you are asymptomatic, which I am.  Does anybody have a really good medical oncologist with lots of brain experience we could consult? 

I choose to live my life on the wellness side of that thin line.  I ran 10 miles yesterday, and now I think I shall go to the grocery store.  You can bet you'll see my bald little head bopping along the trails later this fall.  Well, actually you won't because I'll be wearing a hat, but you get the picture. 

KatyWI

PS.  A special thank you to those who donated to the MRF through my race.  Together we raised $1600.  If you consider that a career development grant through the MRF is $50,000, we just funded a week and a half of research.  Somewhere out there, there's a week and a half worth of work that's going to change the world.  Maybe our little contribution will be the one. 

Just keep going!

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dearfoam's picture
Replies 7
Last reply 9/25/2011 - 11:31pm

Hi,

I haven't posted here before, but have lurked a little while. I am taking care of dad who has stage 4 Melanoma (dx April 2011), with mets to brain and lungs among others. At least 20 tumors. We have had some slowed growth since after his whole brain radiation in late spring and 4 courses of 21 days on/ 7 days off Temodar (started 5th course this week). We see his two Oncologisits (Melanoma Dr and the Radio Onc) next week. Should find out if he has the mutation that goes with Zelboraf and wether or not Radio Onc thinks we should do more radiation, or if the others have shrunk enough to be removed with gamma knife, and if that is even a good idea.

Out of about 6 brain mets, two showed shrinkage (1/3 and 1/2) on the last MRI in early Sept compared to June. Two abdominal tumors (spleen and colon) had also grown according to same week's CT scan, but just by a few mm.

So we don't have the results in and don't knwo if Zelboraf will be an option, but I am wondering if anyone has had brain mets affected by Zelboraf?

For some background:

It's been a rough year having to retire a workaholic dad. We had some hard times where it looked like he was about to go any day. He'd had a lung collapse after getting the biopsy in April, then a bout with blood clots in both lungs in late May. He feels a lot better but has basically been on steroids since April. Trying to wean him off = bad news. He is also taking antidepressants, ritalin, blood pressure med, etc to help counter the Temodar/ deal with other problems and help him feel with it, motivate to read and talk, eat, etc. He is really lucky and not had much pain to speak of, just headaches earlier on before treatment was started in earnest.

I'm pretty concerned about everyhting, duh. Poor dad has no concept of what is really going on (major denial). Like, he listens and stuff, but only selectively repeats (and exaggerates) what works for him, which I appreciate and get on one level, but not so much where he is denying himself things. I appreciate his stubborness to give into cancer, but am kinda mad that he won't take advantage of the time "extended" to his life already. (It's better than it was since he has been on Zoloft and more of the dechadron.) He doesn't understand what treatments do and don't do, and that he will be on them indefinitely. It is really frustrating for us when he wants to move out of our house yet can't drive or think straight. Doesn't want to tell anayone things he'd like to do, because he is about to get all better "in a month or two" and go back to work, and not need to worry about his wishes...

I guess I am not alone in all this, but it sure isn't fun being the one in touch with reality!

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ad2424's picture
Replies 7
Last reply 9/25/2011 - 10:05pm

I am considering doing a trial with Weber at Moffitt (PD1 + antibody - 1106). I only know of 1 person on it right now. If anyone else is on it and willing to share please write back. Thanks.

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nikki's picture
Replies 2
Last reply 9/25/2011 - 11:40am
Replies by: nikki, Anonymous

I was so sorry to hear of Nicole's passing.  She will be so very missed....and to Donna what a lovely, lovely letter to Tim.  It brought tears to my eyes and I understand how much you meant to each other and how heavy your heart is now. You are a very special person indeed.

Does anyone have the link/address to Nic's blog?  I hadn't read it in such a long time...and can't refind it.

Thanks

 

 

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nikki's picture
Replies 0

I was so sorry to hear of Nicole's passing.  She will be so very missed....and to Donna what a lovely, lovely letter to Tim.  It brought tears to my eyes and I understand how much you meant to each other and how heavy your heart is now. You are a very special person indeed.

Does anyone have the link/address to Nic's blog?  I hadn't read it in such a long time...and can't refind it.

Thanks

 

 

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Bobman's picture
Replies 3
Last reply 9/25/2011 - 7:06am

Undoubtedly MM had begun to invade my body years ago, while I was still deep in the Colorado wilderness. In that serene environment, the only real natural threat to life was an occasional rogue bear. Yeah, they ate my chickens, turkeys, and any other animal caught off guard near my cabin, but I was after all in their world, and such were the rules. On more than one encounter with them, they put the fear into me, that I could be eaten as well. Over the years I adapted to the threat they posed, and mostly lived in harmony with them. Country rules. Simple, easy to understand.

     Fast forward a few years, and I now find myself living on a island with no real natural threats, but  a MM diagnosis, that feeds on me, or off of me, by no rules a country boy can understand. At least when a bear was being aggressive, the rules of engagement were clear. Sometimes it was as simple as just running my ass back into my cabin. Sometimes it was not that simple, but still, rules applied.

 Now I go see a derm. every 12 weeks, and he reminds me that given my many personal traits, and what my body is doing between visits, that I am in a fight. The only way I know I'm in a fight, is this thing called MM produces little black spots on my body, that he takes a small knife to, sends to a lab, then refers me out to another guy with a knife, who cuts bigger and deeper. Oh MM, how I wish you would just come walking down my driveway posing a threat to me. I would have something for you to deal with, and I would tell the story of how I laid waste to your sneaky ass. Thats just my simple country logic fantasizing what I would do. But it does give me some pleasure to imagine such a duel.But no, you sneak around, only show yourself if you please. And relentlessly take beautiful people away from us. If only we could be left alone in a room together for a night. I would go medevil on you, no doubt.

  MM you have changed my conciousness. Besides trying to soak in every second of this life, and be present with the moment, I also have the contradiction to that. Anxiously waiting for the future and what it holds. Like right now, its a beautiful day in paradise, just beautiful. The flowers are exquisite. But, my derm. is out of town for a couple weeks, and wants to re-biopsy a place on my arm, that pathology says, "we need another sample". Beholding the flower, and hoping my derm. hurries his butt back here and finishes the job. Goofy duality.

Bob

We are one.

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rbruce's picture
Replies 7
Last reply 9/24/2011 - 9:55pm
Replies by: JerryfromFauq, rbruce, jim Breitfeller, Anonymous

My UCSF Onc just provided the following link to a trial they have going.  I am not familiar with this at all.  I'm waiting for an Anti-PD1 trial they say is going to start in November and he suggests doing this one in the meantime. 

Any help would be appreciated.

http://clinicaltrials.gov/ct2/show/NCT00972686?term=gsk+2126458&rank=2

The drug is GSK 2126458 and it is a dual PI3Kinase and MTOR inhibitor given by mouth.  1 pill a day on 28 day cycle.

Thanks!

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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mombase's picture
Replies 12
Last reply 9/24/2011 - 9:18pm

I met with my oncologist, Dr. Rajappa, today to go over the PET scan results and to get the treatment plan solidified. We were both very happy with the results. While I did have one new tumor in my liver, the tumors in my lungs had not grown or multiplied. I will find out Thursday whether or not I have any new brain tumors. We talked about treatment options and both agreed that it makes more sense to start with the slower responding drug, Yervoy, since I basically have no symptoms and the tumors are stable. We will save the Zelboraf for the time when Yervoy no longer works.

The doctor even said that if there were no Yervoy, only Zelboraf, he would wait for a while before starting treatment because of how well I am doing in the moment. I am very happy that he treats conservatively and he wants my input. He is a jewel. Anyway, there is a lot of excitement since I will be the first patient getting treated with Yervoy in the Sacramento California VA System. I will start my first infusion next Tuesday and will have four total infusions in three months. I am VERY excited to get started, but not so excited to have the infusions!

More to follow!

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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
Anonymous
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.

Linda

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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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