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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Anonymous's picture
Replies 0

Testing the new system

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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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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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bcl's picture
Replies 7
Last reply 9/26/2011 - 6:40pm
Replies by: Donna, bcl, Anonymous, mombase, jax2007gxp, Donna M.

Governor Brown of California is considering whether to sign or veto hundreds of pieces of legislation. One of these bills is SB 746, a teen tan ban for under 18's 

For those so inclined, please send a message of support for SB 746 before 10/10 

And please don't hold back if you live outside of CA   -skin cancer is a global issue and you can bet industry will not have the same reservations. (We had spokespeople from the US flood our teen tanning hearings in Canada.) These hard fought precedent setting laws are needed to raise skin cancer awareness and save lives.

Thank you, linda



snail mail

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Fax: (916) 558-3160


Sign the tanning bill, Guv

Published by The Reporter
Posted: 09/23/2011 01:05:23 AM PDT


Consider this familiar storyline: A common, nonessential, human activity is revealed with certainty to harm or kill repeat users. Modest measures get proposed to regulate the activity and protect individual and public health.

The industry that has grown large by promoting the activity, however, is trying to derail the proposed regulation. They say the science isn't conclusive and, besides, individuals should be able to choose for themselves what to do ("Veto tanning bill," Sept. 17).

We could be talking about smoking. Instead, we're talking about the use of indoor tanning beds, which has been conclusively shown to cause melanoma and other cancers. Senate Bill 746 is a common-sense approach to prevent indoor-tanning salons from offering their services to minors.

Under SB 746, anyone 18 and older can absolutely still use tanning beds (and they can buy cigarettes afterward, if they wish). But the principle behind the bill is that the use of indoor tanning beds is risky and the results can be fatal, and so the choice to use them should be -- in every sense of the term -- an adult decision.

As one might guess, SB 746 is being fought aggressively by the indoor tanning industry, represented by the Indoor Tanning Association. Their claims -- that the science is inconclusive and that 15-year-olds know best -- could easily have been borrowed from the tobacco industry during the second half of the last century. But their claims need refuting, which is not difficult to do:  The scientific evidence that tanning beds kill is airtight. Multiple studies have specifically confirmed the direct causal connection between indoor tanning beds and deadly skin cancer. These studies have themselves undergone meta-analysis from the International Agency for Research on Cancer, which has classified the radiation from tanning beds as "carcinogenic to humans." A 2004 study in England found that 25 percent of the melanomas found in young women owed to the use of tanning beds.

In 2009 the World Health Organization classified tanning beds as a Level 1 carcinogen, the same as plutonium and cigarettes. The U.S. Department of Health and Human Services and the Food and Drug administration have added tanning beds to their lists of dangerous carcinogens. The house of medicine uniformly agrees tanning beds cause cancer. The American Academy of Pediatrics recommends prohibitions like that in SB 746, which is sponsored by the California Society of Dermatology and Dermatologic Surgery and the Aim at Melanoma Foundation. Health insurers such as Kaiser Permanente and Anthem Blue Cross also support the tanning-bed ban proposed in SB 746. More recently, a Stanford Cancer Institute study in March shows that skin-cancer rates among girls and young women from high-income ZIP codes have doubled in the past 20 years.

* We don't let children smoke cigarettes or buy vodka with parental consent. Current law allows 14- to 17-year-olds to use tanning beds with parental consent, the rationale being that parents can be expected to better understand the risks than do their kids. The parental consent rule, unfortunately, is inadequately enforced. Some forms provide little information beyond space for a signature. In other cases, consent forms can portray "sunburn" as the major health concern rather than malignant cancer. And parents with questions about health and safety are typically on their own, as no specific training in health risks is required of salon employees.

* There is an alternative to tanning beds. There is a safe, effective alternative to tanning beds that many tanning salons already offer: commercial spray tanning. This tanning is growing in popularity, and celebrities such as Snookie of Jersey Shore have switched to spray-tanning. SB 746 is less a threat to tanning salons than an opportunity to serve valued clients in a safer, more responsible way.

Because of the incontrovertible medical evidence linking tanning beds directly to skin cancer, several countries in Europe such as France and England have banned tanning beds for anyone under 18. Brazil has banned tanning beds completely for all ages. In the United States, 30 states have some restrictions on teen UVR tanning. Texas is the most progressive, with a tanning-bed ban for anyone under 16 1/2. New York, Illinois, Ohio and Rhode Island currently have bills in progress similar to SB 746.

It is time we follow where the evidence takes us and urge Gov. Brown to sign a public-health bill that has enjoyed bipartisan support. We in California must act now so that someday we won't have to regret the suffering and loss of life that occurred after we already knew better.

State Sen. Ted W. Lieu, Torrance

Dr. Isaac Neuhaus, San Francisco

Sen. Ted W. Lieu, D-Torrance, represents nearly 1 million Los Angeles-area residents. Dr. Isaac Neuhaus, is a board-certified dermatologist at University of California, San Francisco's School of Medicine and president of the California Society of Dermatology and Dermatologic Surgery. For more, visit

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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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Angela C's picture
Replies 3
Last reply 9/23/2011 - 11:24pm


I am 2 1/2 weeks out from my first dose of Yervoy. For the second time in a week now my cheeks have become very rosy and warm. My cheeks just feel hot like I just got done exercising, or something like that. I don't have a fever. Just wondering if this might be related to Yervoy. Has anyone else experienced this?

Be kind, for everyone is fighting a great battle. -Plato

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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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For My Sister's picture
Replies 7
Last reply 9/23/2011 - 1:40pm

I did some searching & found that our dear Shari C passed away on July 13 in Chadron, Nebraska.  She was a Christmas day baby as well.  Such a beautiful spirit, maybe she was there at the gates of Heaven to meet my sister, Cheryl (May East) and Nic.  Also wanted to thank everyone for the kind and comforting comments regarding the loss of my sister.  You are all in my thoughts and prayers everyday.  Keep fighting the good fight, my friends. 

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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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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.


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Anonymous's picture
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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Anonymous's picture
Replies 8
Last reply 9/30/2011 - 6:58pm

My husband was diagnosed with Melanoma in May.  He had a swollen gland that the Doctors thought was an infection and after testing it was confirmed that it was cancer.  He had a radical neck dissection in June and the tumor was removed and he is now in Stage 3c and underdoing Interferon treatments.  So far everything has been going pretty good until two days ago when he noticed a bump on his neck near the surgery site.  He is going to see the oncologist tomorrow to have it checked out but I was wondering if anyone has experienced this?  I'm wondering if it could be an infection or if it is another tumor.

As many of you can relate, our life has been turned upside down.  He is 42, we've been married for 19 years and have two teenagers.  He is the love of my life and I worry about him so much.

Thank you

Be a fountain not a drain

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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.

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.



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

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AlanM's picture
Replies 1
Last reply 9/22/2011 - 10:17pm
Replies by: Jim M.

I am one week away from 3rd infusion of ipi and just had to start 20mg/day prednisone to control gastro issues. The nurse told me that it generally takes a few weeks for them to take affect and  to taper off the drug. Will being on the steroid cause me to miss my next infusion?  I have had shrinkage in the brain met that I have and I want to keep that moving forward!


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Anonymous's picture
Replies 1
Last reply 9/22/2011 - 3:24pm
Replies by: Harry in Fair Oaks



I am a newbie and need your help. I just turned Stage 4 and my doctor is recommending GSK Braf/MEK combo trial. I have have subq on leg, chest and mets on both lungs.

I sincerely would appreciate any feedback / experience with the BRAF & Mek combination drug.

I am very interested in knowing in the following:

1. how long it took to see tumor shrinkage ?

2. how long has the combo drugs been working  OR Stopped working?

3. anyone get rid of ALL there tumors with this combo drug and remained NED??

4.  what side effects have you experienced


Thank you so much for taking the time to reply to my questions. I wish you all a status of NED.


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