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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mom3girlsFL's picture
Replies 3
Last reply 9/28/2011 - 5:27pm

PET scan last monday, onc appt yesterday.

IMPRESSION:  There is slightly increased uptake within a one cm node in the left popliteal fossa.  This is a nonspecific finding which may be both inflammatory and/or neoplastic in nature.

So, CT of left knee (?) scheduled thurs morning.  Onc not too terribly concerned although he does not like the location being on the left side (radical groing dissection, left, sept 2010, node involvement).

As for my other concerns - frequent headaches? stress. abdominal cramps? stress. leg aches? who knows!  weight gain? ben and jerry's phish food!!!!

Feeling pretty good about it being nothing, but...trying to breath!


Do not fear tomorrow, God is already there.

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j.m.l.'s picture
Replies 14
Last reply 10/2/2011 - 4:42pm

I have been given the first infusion of IPI. Next one in 2 wks. Side effects manageable. DOES ANYONE HAVE INFO ON THE GOOD EFFECTS OF THIS DRUG. IS IT WORKING FOR YOU. The last tumor is inoperable bec. it lies on a vein.

many thanks

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patanderson's picture
Replies 2
Last reply 9/29/2011 - 1:12am
Replies by: Cynthia C, benp

Does anybody have thoughts on the recent study showing much better survival for patients on beta blockers?

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Replies by: jimjoeb

Hi there,

I read this forum daily and have been really saddened by the experiences of so many people here.  I hate this horrible disease.

I had a WLE and neg SLNB in the groin (0.82mm, non-ulcerated, <1 mitoses) in December last year and since then have had two different types of pains which have been bothering me.  Neither need pain relief.  I have an aching feeling in the upper leg worse with exercise and seems to be ?lymphoedema.  One leg was 3cm bigger than the other at one point and I saw a lymphoedema specialist but didn't do any of the massages because I worry about doing it. 

The pain which is the one that bothers me at the moment, is a sort of stabbing achy pain in my left lower abdomen/pelvic area.  It is really bothering me at the moment, it has gotten worse.  I am hoping maybe it is because we are moving countries next week so I am stressed.  I am just not sure though and it is really quite sore.  My GP suggested "physio" some time ago but it really is nothing to do with my joint at all.  I had a PET/CT in April because of this which was clear although the initial CT indicated reasonably large lymph nodes (around 1cm) ...this is why the PET/CT was requested.

What I am hoping is that I might get responses of other people who have experienced something similar and that this might be related to the build-up of lymph? 

I dont feel I can go back to my surgeon and complain again about this pain, well I could but I dont know what would come of it.  I dont want to have unnecessary investigations, and I wonder at what point I would be happy with the results.  Maybe only time will give me some peace.  I just really would like to know what the cause is, and know that it is not the melanoma.

In any case we are moving countries next week (on Wednesday).  I dont have a new Doctor sorted out there yet but I might try and book in to see somebody as soon as we arrive.  The complicating issue is that there will be a one year period where I will not be insured for pre-existing conditions there and I will need to return here to have any sort of tx/investigations if required if I dont go through the public system (which takes forever).

If anybody knows of some excellent specialists in Brisbane Australia that would also be helpful.

Thank you for all of your help over the past 10 months or so.  This forum has really been so helpful (and very frightening at times).  I have had a lot of ups and downs trying to get my head around this with a very young family.


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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.


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.



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Anonymous's picture
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


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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.


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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.


Here is another virus success story for Leukemia


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.


Here is another virus success story for Leukemia


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,



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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. 


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.




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