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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trishahimm's picture
Replies 14
Last reply 10/12/2011 - 5:08pm

Hi all,

I have a couple of questions for the panel of pros here. 


My dad had a very large and deep ulcerated melanoma tumor on the bottom of his foot with metastasis throughout the groin with "invasion " into the lymph and blood vessels. They had to wait until the surgical sites were healed before starting the radiation on the foot and groin for 8 weeks and then interferon for a year. That was the treatment plan they laid out for him just after his surgery about 8 weeks ago. So finally he healed and started radiation about 2 weeks ago and last week he noticed 4 new rapidly growing spots on his foot. The surgeon cut them out and they will not have results until tomorrow or Thursday but the surgeon and oncologist are positive this is more melanoma. He will be going in for new scans soon.

My dad's question: do the new tumors start from deep in his foot and then grow up to the surface? He is thinking that because the original tumor was 11 cm deep, these somehow started down deep and then have worked their way up. I don't think this is the case, but I don't really know. Does anyone know? I told him to ask his oncologist as well.

My question: is this really soon for a recurrence? This seems pretty aggressive to me when there were no signs of additional cancer in the foot just 3.5 months ago when they originally did surgery on the foot and to have 4 pop up and then double in size within a matter of 5 days.

Any feedback or comments would be appreciated.



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Jewel's picture
Replies 15
Last reply 9/28/2011 - 8:38pm

 Hi there,

My husband has been recuperating from a ELND and Skin graft with WLE, while he has been doing well with recovery we are now faced with alot of decisions which I have seen alot of you wonderful people have to make.

We will be going to Sloan Kettering for a 2nd opinion and to hear what they might have to offer. We have done nothing other then surgeries.

My husband is a firm believer in keeping his body and his mind strong....putting all these chemicals in his body when he is showing NED at the moment is hard for him to swallow.

I would appreciate hearing from all you survivors who have had positive nodes and what personal choices you made for yourself. I know everyone responds different and melanoma grows differently in all of us.

Scared and Confused, even though I would never let my husband know that. He has been amazing through all of this.

Thank you,


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Newmom's picture
Replies 1
Last reply 9/27/2011 - 3:29pm
Replies by: Newmom

My understanding is CT scan is more accurate in measuring tumor size.  Any thoughts?  I am seeing a difference of almost 3 cm in length with the 2 tests – CT scan is bigger in this case.

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momof2kids's picture
Replies 2
Last reply 9/28/2011 - 11:10am
Replies by: momof2kids, nickmac56

I had brain surgery back in June 2011, and just this past week my Brain doctor told me I can stop taking the Dilantin since I've never had a seizure.

Unlike the steroids where it took a month of weaning off according to the doctor, this time he wants me off these in 1 week, so instead of 3 pills a day, I'm down to 2 pills a day, and tomorrow thru Thursday I'll be down to 1 pill a day.

Just seems like quick stop, just making sure that seems right?

I am sorta nervous about going off though, I always like the extra protection of not getting a seizure of course, now it's like if my body wants to give me one it will.

So, just anxious to see if anyone else stopped taking theirs that quickly?

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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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