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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Charlie S's picture
Replies 12
Last reply 9/29/2011 - 6:13am

Though I have my own standard for flu shots, wondering what other peoples  oncs are telling those who are undergoing or who have underwnet  treatment  for melanoma.

A nuance to be sure, but I am curious knowing that melanoma is the sum of all the parts and not singular.

Cheers,

Charlie S

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cdnewt's picture
Replies 7
Last reply 9/30/2011 - 1:00am

Hi all.... thanks for this great board.   I have learned a lot here in a short time.  I am, I think, IIIc (3mm melanoma removed from my back, followed by 2cm wide excision and sentinel node biopsy.  Of the 6 nodes removed, 1 had a macro (>1cm melanoma), and the other, a micro.  

 

Anyways, I am looking for information on the best medical centers dealing with Melanoma.  Right now I've been pointed at Sloan-Kettering, but I was wondering about other opinions and centers I should be aware of as well.

 

thanks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/27/2011 - 10:24pm
Replies by: jax2007gxp

Hi Jacki,

I been away so I want to catch up with you.

I read some post you replied to.

How did you session with the lyphedema specialist go? Is the specialist at UCI??

Have you picked an onc yet for possible treatment? What are your thoughts about treatment?

I read your post about numbness in your thigh. I have the same skin numbness from middle of knee to groin from surgery 4 months ago and my thigh is still numb. My doctor tells me it might not get better.

Sometimes I feel sharp electrical nerve type pain in my thigh but nothing more. I have had other surgeries & the numbness never went away.  What does your doc tell you about getting felling in your thigh again.

Take care

Jamie

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Replies by: jim Breitfeller, Anonymous

The T-cell-specific cell-surface receptors CD28, CTLA-4, ICOS and PD-1 are important regulators of the immune system. CD28 potently enhances those T-cell functions that are essential for an effective antigen-specific immune response, and the homologous CTLA-4 counterbalances the CD28-mediated signals and thus prevents an otherwise fatal overstimulation of the lymphoid system. PD-1 engagement can prevent ICOS but not CD28 costimulation. The inability of ICOS costimulation to override PD-1 inhibition is directly related to the low IL-2 levels it induces upon its engagement. ICOS Costimulation requires IL-2 and can be prevented by CTLA-4, PD-1 engagement. With the CD3/CD28 blocked downstream at the P13K and the Akt pathways, the T-cell is activated but the proliferation and survival of T-cells/immune response is terminated.

A picture is worth a thousand words.

Based on the above model, Downstream of the CD3/CD28 signaling the co-inhibitors down modulate the P13/Akt signaling. Signaling via CD28 is required for optimum IL-2 production, cell cycle progression, and survival. CD28 is constitutively expressed on naive CD4+ T cells is slightly upregulated after T cell activation.

 

The CTLA-4 and the PD-1 expression increase over time in Melanoma patients. This is why it is so very hard to eradicate Melanoma in the late stage IV.

To counteract the inhibition, one can use Antibodies to block the suppressive signaling coming from the CTLA-4 and PD-1. This is where Yervoy (Anti-CTLA-4) and Anti-PD-1 come into play. So if you can do a therapy with a systematic approach, you may be able to beat Melanoma.
It is now known, that IL-2 can down regulate PD-1 receptor so you might not need to do Anti-PD-1 therapy. Or you might do anti-PD-1 instead of IL-2 therapy to cut down the harsh effects of the IL-2 therapy. It is now known that the T-cell activation/immune response needs IL-2 to produce a robust immune response.

Best regards,

 

Jimmy B

Melanoma Missionary

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Replies by: dearfoam, KatyWI, kylez, benp, mombase

Our Medical Oncologist called today to discuss setting up with the neurosurgeon for a biopsy of Dad's brain tumors. There are a few to choose from, and he says the recovery is better than with the other options (spleen tumor would risk too much bleeding and require a resection/ week+ recovery in hopsital). The point is to send sample off for the BRAF test as the other sample was insufficient.

Just wondering how that has gone for other people. I worry about dad having a crainiotomy just because he has had problems with other biopsies in the past. Back in April he ws in the hospital over a week when biopsy #1 gave him a lung collapse 3 days after, followed by several blood clot problems etc. Biopsy 2 was OK because they still had him in-house for the recovery. But he already has messed up judgement and reasoning; I worry if treatment goes really well, he will have brain damage (though maybe he already does to a degree) and not be able to practice law professionally again (which is all he wants to do).

However, we will all enjoy telling him he has a hole in his head! We do try to keep things light-hearted.

Thanks in advance for your thoughts and replies.

-DF

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fgilbert63's picture
Replies 3
Last reply 9/26/2011 - 6:58pm
Replies by: fgilbert63, Anonymous, jax2007gxp

This is big, and could eventually cure many cancers. This article relates to breast cancer however the artical also speaks to how this has been a success with melanoma cells.

 

http://www.dailyglow.com/breast-cancer-cells-killed-in-lab-trials-0926.html

 

Here is another virus success story for Leukemia

 

http://www.pri.org/stories/health/genetically-tailored-virus-may-cure-leukemia5365.html

 

Hopefully pressure will be put on to get these moving fast, actually they should offer such treatments to any cancer patient who is willing to take the risk. They could still proceed with normal trials but let folks who are running out of options take part in medical science and participate in these new therapy revelations. The only way for this to happen is to get loud and demand it! 

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This is big, and could eventually cure many cancers. This article relates to breast cancer however the artical also speaks to how this has been a success with melanoma cells.

 

http://www.dailyglow.com/breast-cancer-cells-killed-in-lab-trials-0926.html

 

Here is another virus success story for Leukemia

 

http://www.pri.org/stories/health/genetically-tailored-virus-may-cure-leukemia5365.html

 

Hopefully pressure will be put on to get these moving fast, actually they should offer such treatments to any cancer patient who is willing to take the risk. They could still proceed with normal trials but let folks who are running out of options take part in medical science and participate in these new therapy revelations. The only way for this to happen is to get loud and demand it! 

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jmmm's picture
Replies 3
Last reply 9/27/2011 - 3:55pm
Replies by: jmmm, janet-varner, ad2424

After a second opinion and thinking about it for a week, my husband wants to try for a PD-1 trial.  I've spent hours doing research and trying to find a trial, but I'm so confused!   I realize there are different drug manufacturers and they use a different number/letter combination for their drug.  I'm trying to track down a trial that allows for patients who have had previous yervoy/ipi treatment to enroll.  Please help!  Does anyone know where there is a trial for a PD-1 drug for a patient with previous yervoy treatment?  It looks like Sloan Kettering and/or John Hopkins might have a trial, but I"ve called and they all tell me that we'll have to come to their clinic to talk to the doctor.  We live in St. Louis and it would cost $500+ to fly up there to talk to the doctor.  We'll figure out how to do it, but I don't want to go all the way up there and have them tell me that he won't qualify because of prior treatment--they should be able to do that over the phone, right?  Thanks for any help--we're totally overwhelmed and confused. 

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MariaH's picture
Replies 5
Last reply 9/26/2011 - 2:18pm

Well, as I had mentioned before, Dave finished his second week of IL-2 last Friday, September 16.  Other than the usual side effects (fatigue, itchy, peeling skin) he felt well.  However, on Sunday afternoon he started complaining of blurry vision.  On Monday and Tuesday it was the same, and Wednesday morning it was bad enough to call his oncologist (Dr. Khushulani).  He told him to see his optholmologist immediately (Dave is blind in his left eye due to a childhood injury).  His optic nerve was slightly swollen, so he recommended a brain MRI to rule out brain mets.  MRI was good, so his onc and optho agreed it was a rare side effect and would improve.  However, by Friday morning Dave's vision decreased so much he could no longer see.  We rushed him back into his optholmologist, who confirmed that by then Dave's optic nerve and optic disc were severely swollen.  They immediately started him on 80mg prednisone to decrease the swelling, knowing that the steroids would contradict the IL-2.  However, to Dave this was a quality vs quantity of life issue - and he wanted his vision back.  Since his optho was not 100% sure of Dave's vision returning, I cannot tell you how happy we were that he woke up this morning and could see shadows and muted colors again - a significant improvement. 

Apparently, Dave had a "toxic" reaction to the IL-2.  We do not know what triggered this or whether it had to do with the fact that he had his other eye removed 10 years ago (he had kept his bad eye, and eventually developed glaucoma in it).  The prednisone seems to be working, and we are hoping that his vision continues to improve to normal over the next week.

I thought I would throw this out to the board in the event anybody else ever encounters this.  We (meaning I, the onc, the optho) could not find a case study or any reference where this had happened before.  But maybe, if this ever happens to anybody else, our situation would pop up in their search.

Most certainly Dave will be looking into other treatment options, but in the meantime, I still believe that IL-2 (or studies involving IL-2) is your best chance for first line complete response.  I just keep praying that eventually, they will find a better one.

Best wishes to you all,

Maria

 

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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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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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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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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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ValinMtl's picture
Replies 15
Last reply 9/26/2011 - 7:45pm

Just to let you know that I have not forgotten about each and every one of you.   Days has been very difficult.  Keeping food down and trying to stop the aching from lymphedema.  I also didn't want to say anything too quickly.  I go for tests starting next Tuesday for 3 days and pray that I have  regression...then I will give a report.  I will be having a scan and results, very nervous, it looks pretty good but I don't want to celebrate too early.  Take care.  Val  xx

Live Laugh Love Nothing is worth more than this day!

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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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