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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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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justlittleoleme's picture
Replies 6
Last reply 9/28/2011 - 9:18am
Replies by: justlittleoleme, Anonymous, lhaley, mimi0201, nickmac56

My husband's surgery is Friday.  I have asked them to test the tumor for BRAF anything else we need to request?

We visited with a melanoma oncologist Monday who gave us three options for adjuvant treatment.

1) radiation 2) interferon 3) clinical trial with a)interferon b)Yervoy-depending on which group he would get into.

We will know more once the surgery is completed and the pathology results are back.

I am planning on attending the symposium in Chicago on 10/1.  I am hoping he is feeling better so I can go.  I think there is a lot I may learn.


Thank you Tim for this website!  I have learned so much and I feel my knowledge of melanoma is still in its infancy.  I really don't WANT to know more, but I NEED to know more.  I want my husband around for a long time!



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

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mwilson's picture
Replies 1
Last reply 9/28/2011 - 9:09am
Replies by: Anonymous


I'm new and hate to meet you all this way.  I was diagnosed as a Type II diabetic last July 2010.  This July 2011 I had a mole on the back of my calf looked at by  a dermatologist and after excision and biopsy, found it was melanoma.  Since it was deep, I then had a WLE and a SLNP with finding of one micro metastis.  Well, so much for happy news in the month of July!

I'm Stage IIIa. I've just had a brain MRI and will have a CT/PET tomorrow and then meeting with the oncologist next week.  He is setting up a referral for me with UofA AZ Cancer Center in Tucson.  Dr. Cranmer. 

The surgeon has recommended that the rest of the lymph nodes be removed.  My hesitancy lies in the fact that my mom had lymphadema and I fully understand the problems managing it.  I did find a meeting at the Phoenix Wellness Community next week that focuses on lymphadema so will go there open minded and increase my knowledge.  I'm just not sure of having the surgery. 

The oncologist and I have talked about 4 weeks of interferon.  My question is - is there any problem with taking metformin and interferon that anyone knows of?  The doctor was looking on line and could not find a reference. 

We are thinking that I just monitor my blood glucose more closely than I usually do.  I don't have a problem with high reading - I'm kind of middle of the road but under decent control with an A1C of 6.4.

Thanks for all the information that you put on this board.  It has surely made me more educated.



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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: 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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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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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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jax2007gxp's picture
Replies 9
Last reply 9/27/2011 - 3:18pm

Hello all,

This past Tuesday I met with my surgeon regarding the surgery from a couple of weeks ago.  Based on the path results, I am Stage 3c. 3 positive nodes, 2 of which were matted.  Plus, the Cloquets node came back positive (after a negative result when frozen and tested while I was under in the operating room...the negative result caused him to skip taking out the deep nodes).  The Cloquets was positive for a 1mm spot in the middle of the node.  Of course, this worries me because the melanoma could have gotten to the deep nodes which remain in my body.  The doctor does not believe we need to go back in for the deep nodes because he believes it is unlikely the melanoma got past the Cloquets node since it is only 1mm.

I am being referred to the oncologist to begin treatment once I heal from surgery.  My concern is that the doctor told me that interferon is my only option because I am stage 3.  He told me that Yervoy and other options were for stage 4 patients.  Of course, I haven't heard this from the onc yet but I want to be prepared when I walk in the door.

Any feedback that may be helpful for my consult with the onc?

Many thanks,


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LynnLuc's picture
Replies 4
Last reply 9/27/2011 - 12:36pm

I also saw Dr Weber and discussed going back to work. He thinks it's a great idea and says I am doing awesome. He also says I am ona good drug and feels very good and believes I will continue to have positive results...dare I hope! I have 2 more treatments and then I go to anti-pd-1 (MDX 1106) every 3 months....hoping to remain NED! Just wanted to share the news!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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CKasper's picture
Replies 9
Last reply 9/27/2011 - 11:16am

Hello to any one who reads this post.

I have been dealing with this disease since 1984.  My worst time has been since 2005 when I was staged III A or B.  I'm not sure because I have conflicting dr's notes.  At this point I don't think it matters.

In the years that followed I have gone through several surgeries and tried High dose interferon therapy which did not work for me as I had a very bad reaction from the immune drugs.

Last fall after getting out of the hospital for a serious heart problem, I was told I was cancer free....yeah, hurray!!!

Then my life really fell apart.  My husband left me, we are going through a divorce and my adult children hardly talk to me because they want to be neutral regarding the divorce.

I live in a very cold place in the winter and barely got through, I ended up in the hopstial I believe 3 times.

Every time I go to my internal med doctor he says I look good, and I just need to be positive and keep going.  I haven't had any body scans since last fall.  I had one for my head because I fell down the stairs (one of my hospital stays).

So since my "cancer free" delcaration, I have heart problems, falling problems, rash and welt problems, chronic pain problems, but I still got around, however I have noticed I have lost a lot of weight and my strength isn't what it was just 3 months ago.

About 10 days ago, I got welts, both arms became swollen, I have a hard time going to the bathroom, and on one night I got up and I felt I was going to pass out, this has happend a couple more times since then. 

I am eating when I have the strength to get up and fix myself something to eat. 

I have new pain in the right side of my body where all of this stupid disease started.  I am having a very difficult time taking care of myself.

I've been on and off this board over the years and I have read some pretty courageous things, but I think I am very tired of this disease and I think its back, and I think I'm going to let it take its course. 

I am frightend about getting up, and having the heart problem and passing out or dying.  Not so much the dying, but the lonliness and the fact that it would probably be days or weeks before anyone would say hey have your heard from her?

I'd like to say I do respect each and everyone's decisions on this board over the years, and I have seen great courage from those of you who ventured out and tried new things.

I'm tired of writing for right now and Wish you all good things and I'm going to try to do this every day, but the computer is upstairs and I' m not so good about being upstairs right now.  I do pretty much all my living on the first floor and sleep on the couch. 

So, thank you all for being an inspiration.  And hopefully I'll write and converse with you again soon.

I decided to post this anonymous.  However I am a Melanoma survivor of  27 years.

Peace be with you all, and hopefully the road to good health,




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mom3girlsFL's picture
Replies 6
Last reply 9/27/2011 - 5:21am

Silly question?

Stopped  self inj interferon back in Aug/Sept 2010 due to recurrence.  NEVER had issues with my teeth...until last week.  I was sneaking a bite of my  daughters cereal and BAM! a piece of my last upper molar came off!  Hmmm....

Did it spite me b/c I was sneaking a bite or could it be interferon related after 6 mths?  Or...maybe I'm just getting old - ha!ha!  Just curious.  I do have a dental appt on Monday morning - just ANOTHER doctor to add to the list!

Thanks for any help!


PS - last dental appt was 2 yrs ago (was a little busy w/ mel since then), but had gone regularly.

Do not fear tomorrow, God is already there.

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Tim--MRF's picture
Replies 19
Last reply 9/26/2011 - 11:00pm

I received an email from a long-time, close friend of Nicole (NicOz) and she gave me permission to share the note.  I hope everyone who reads this understands how very important you are to each other, and how very meaningful your interactions are.  Here's the note:


Dear Tim

We have never corresponded, yet I feel I know you, through my friend known to MPIP as NicOz.  Through her journey I have often come to this board to share in some small way Nicole’s journey.

I am so very sorry to say that Nicole has died as you have no doubt read on the MPIP board.  Nicole either died during the night of Sunday 18 September or the morning of Monday 19 September.  I do not yet have those details.  As you can image her family are dealing with their grief. If you feel this email is worth sharing I am happy for you to do so. 

I wanted to write because I know how important this board and the brave generous people who shared their stories were to Nicole at times.  How it comforted her, informed her, saddened her, angered her, but always made her feel a part of a community, which we her family and friends could never really experience being on this side of the melanoma battle.

Nicole was a warm, loving, caring person, who struggled with this disease as others do.  Often, more often than not, she found it easier to deal with this journey with anger and an acerbic wit in public, masking a heartfelt grief and fear, which she could not express, even at times to herself.  Behind the scenes I know that there were many she wanted to support and did a wonderful job of it. Nicole was a tenacious little Foxie Terrier.  Her bark was always far more than her bite.  It helped keep her strong in this battle, focused and determined. At times also driven like a dog with a bone.

Many on this board, some still here, some who are resting, and some who are no longer in need, meant a great deal to Nicole.  I could name so many and yet I won’t just in case I forget a name or get one wrong.  I would like to think they know who they are. You were of course, one of them, Nicole held you in high regard. The journeys she listened to, the discussions she entered, the stoushes she once told me helped her feel alive, yet at others times hurt her because she was misunderstood.  I use to tell her stay away, don’t get so involved, and let it go, they don’t know you. 

Then for the past six months I have come to this board and engaged with many of the people here, feeling their triumphs, hurting at their setbacks.  The way that the people here offer solace and concern, they empathize and support as well as inform and rally and I understood why Nicole found it so hard to stay away, to not get involved, why she engaged. I never intruded into what I felt was Nicole’s space, although many times I was tempted, to encourage, or to empathize or to simply comment on a post not responded to.

Nicole has left a piece of herself with many of us, she is my son’s God Mother, was a best friend.  These are but a few pieces I will carry with me always, she has left many pieces of herself with me and mine.  But I think that she would have liked to leave a mark, a deep, and a little shared thought with those whose journey she has participated and shared in, the community no one wants to be a part of, but receives so much because they are.  She would deny it, she would have something ready and clever and self deriding to say, to cover her soft spot but I think it important to share that I think if she felt she could, she would say….

Be true to yourself, be kind to yourself, be kinder to others and be kindest to snappy tenacious little foxie’s fighting the battle. Good journey’s all whose path was at one time joined with mine.


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Anonymous's picture
Replies 6
Last reply 9/26/2011 - 8:19pm
Replies by: rbruce, Anonymous, FormerCaregiver, boot2aboot

Hi Boots,


I have been away from MPIP.

What treatment did youdecide to do?How is the treatment going?

Wishing you the best!


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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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Judy in CA's picture
Replies 10
Last reply 9/26/2011 - 8:01pm

It's been a long time since I've been on this board, and it's gotten pretty high tech since the last time I checked it.  My husband Peter was diagnosed with stage IV melanoma in Oct 1999.  It was found first in his bowel, then in his brain, then a couple of years later in his chest.  The amazing thing is that he has been NED since  2001.  He has been working and in good health.  In 1999 when I read on this board that stage IV people were NED, I actually thought they were lying.  There is hope!

Peter would not have survived without two exceptional doctors.  His surgical oncologist is Leland Foshag, (John Wayne Cancer Institute and Angeles Clinic). His medical oncologist is Steve O'Day, who started The Angeles Clinic.  We were blindsided when we went for Peter's scans on Thursday and told that he is no longer with the practice. The Angeles Clinic will never be the same. He is irreplaceable.

Judy Clifford

Take charge of your treatment, and find the best doctors out there!

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