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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I hope this works for MEK inhibitors as well.  Looks like they are getting closer and closer.  Lets all pray that this the year. 

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Maxximom's picture
Replies 10
Last reply 3/17/2012 - 5:37am

4 days before I was due to start Ippi infusion # 2.. I started to get some nasty diarrhea (well I finally learned to spell the word..LOL) I prayed that I could drive to OSU and get through the treatment without having a problem and I did. The next day,last Friday.. I had the start of really big time watery blow outs and was started on 20 mg of Prednisone..the diarrhea has not really abated very much.. it seems to come in waves.I take the Pred at 10am and for the most part I am usually pretty good most of the day and then start again at night. Yesterday Dr Kendra had me come down to OSU to check me out. I ran the recommendation to use Endocort (thank you NY Karen) by Dr Wolchok at Sloan Kettering past her. I always hesitate to mention what another doctor suggests..and I know that you have to be very diplomatic.. but I did it and she was most receptive. Dr Kendra said that she was in regular communication with Dr Wolchok and was not familiar with using the Endocort for the Ippi induced Diarrhea and would call him and get back to me..mission accomplished! Meanwhile she had me add another 10 mg of the Pred to take at 10PM . She is taking this very seriously. I hate being on the Pred as I am Diabetic and It messes up my blood sugars and I have to really ride herd very carefully on them.I just want to get off the Pred as soon as possible so I can go on to Ippy #3 in2 weeks..also I haven't been able to leave the house for 10 days.. I need to be near a toilet..I also need to sleep through the night..sigh


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eerye70's picture
Replies 13
Last reply 3/17/2012 - 1:25am  I have been following several warriors on here for some time. I just loved Kellie's personality and fighting spirit. It seems as if melanoma grabs hold of the most amazing people. Kind of makes you want to be dull and boring for protection. Anyway, i get Caring bridge updates on her and her sister updated the caring bridge site of her passing. I waited to see if there would be an update here and when it didnt happen, i thought i would post. I don't want to overstep my bounds, but i thought some who had been following her posts would want to know. She was on another trial and at home with family doing well. Her last post was at Valentine's day. she had been updating almost daily, and it seemed as if the worst was sleepiness and nausea. But then when she didnt post for a week, it was not good. Seems she got admitted to the hospital for pain control and then taken off the study and went home with hospice. Her sister said her passing was painfree and peaceful with her family around her.

Again, i didn't want to overstep anything, i don't know her personally but i felt like she was family and i thought others might want to know. Debbie

Time to put on your big girl panties and deal with it!

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Tim--MRF's picture
Replies 20
Last reply 3/16/2012 - 7:14pm

Many of you saw the NY Times article this past Sunday, describing cousins, both with Stage IV melanoma.  They both enrolled in a clinical trial of PLX4032--the BRAF inhibitor by Plexxikon/Roche.  One cousin received the BRAF inhibitor and is doing well.  The other, who received the control, has died.

This raises a lot of questions about clinical trial design.  Our Scientific Advisory Committee has engaged in a very robust online discussion about this, involving about 150 emails!  I wonder what your opinions are on this.  Here are a few questions:

--Is it ethical for the control segment of a clinical trial to be a therapy that is approved, but is almost certain to be far less effective than the drug being tested?  (But, if you don't use a control, then how can you be sure the data are real and not because the patient or treatment team acted differently because they thought they were on a miracle drug?)

--If a person on the control arm does not respond to the approved drug, should they be allowed to "crossover" and get on the drug being tested?  (But, if you allow crossover, then the data for overall survival benefit is compromised, possibly limiting the future approval of the drug.)

--It seems clear that drugs in development right now are showing more promise that drugs that are currently approved.  If this is the case, is it ethical for a doctor to put a patient with metastatic melanoma on an approved treatment without first discussing the option of clinical trials?

If this post results in some robust responses I will work to get this input to the FDA and to the researchers and industry people involved in these trials.


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WTL's picture
Replies 23
Last reply 3/16/2012 - 6:52pm

Hi everybody - "A small hypermetabolic left supraclavicular focus without a definite CT correlate is of unknown etiology." This was the only abnormality on PET/CT scan for newly diagnosed melanoma on right calf. No suspicious enlarged nodes identified in the neck. Biopsy: superficial spreading, Breslow's 0.55, Clark's level 3, mitochic index 2/, staged at IIA.

My dermatologist told me nothing - he passed me off to his PA, who seemed somewhat knowledgeable, removed a basal cell carcinoma but left the melanoma (a lot of it was removed in biopsy - don't know the method used). She said that it wasn't nodular but had a small nodule raised above the skin, and because of the Clark's level I would need to be staged (again?) - from web searching I got the impression I could also be at stage IB, and that Clark's level is not that great a tool.

Do I need a biopsy of that node in my neck? I read that leg melanomas usually spread to the nodes in the groin. So what are the chances that the neck node is melanoma?

What concerns me is that the PET/CT did not pick up my prostate cancer, which I know is small and has always been contained in the gland (the PSA is only 1.17 because there's not much of the gland left after two HIFU treatments, soon to be a third). So I have to wonder how accurate the scan is if it didn't see the PC (but it did see my plantar fasciitis!). Could the PC be the cause of that hypermetabolic node? What are the chances the node means no metastasis?

I seem to be on my own (had to find and set up the PET/CT scan), trying to find an oncologist, get in to County-USC (up to 2+ months wait), or City of Hope or UCLA. The PA said they don't deal with melanomas that can't be easily removed in the office, nor did they give me a referral to an oncologist ("we don't know any").

And I have no insurance, 6 months shy of Medicare. I'm up at 4 am worrying - the prostate cancer was scary enough (and has taken a lot of our savings), melanoma is scarier. Sorry to go on so long - trying to give as much info as possible, and have no one to ask, so all I do is search the web and make phone calls trying to get consultation and treatment.

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mommydog's picture
Replies 13
Last reply 3/16/2012 - 6:10pm

My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

Thanks for any insight or advice.


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Hope Returning's picture
Replies 8
Last reply 3/16/2012 - 5:20pm
Replies by: Anonymous, m888g, Theresa123

There were posts that Steven O'Day will resume working, but not in the Angeles Clinic, but for months no one gave any update. Does anyone know what happened to Dr. O'Day and whether he is back to work anywhere?

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ad2424's picture
Replies 5
Last reply 3/16/2012 - 3:47pm
Replies by: TSchulz, NYKaren, cltml, ad2424

I did a course of IL - 2 in December. This was myu first treatment of any kind. I have lung nodules measuring 7 mm and smaller. I tolerated 8 bags week one and 5 bags week two.

I had a scan 6 weeks after treatment which showed stable disease and a scan 12 weeks after treatment which also showed stable disease.

My question is whether or not to do a second course of treatment or not.

My doctor (Dutcher, St. Lukes Roosevelt in NYC) is recognized as one of the foremost experts in renal cell carcinoma, and also treats patients for melanoma. She has treated over 500 patients with high dose IL - 2. Her opinion is that I am a resoponder, that there is no data to show that doing a second course of treatment has proven benefit, and that I should scan in another 3 months.

I know many doctors recommend a second course as standard protocol. Does anyone know if there is data to show a second course of treatment has benefit? Thanks.

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I just rec'd e-mail from a fellow warrior and he had done a interview with BSK ...John Patrick Michael Murphy.... Murphy

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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"There are not many times that I am truly speechless but this is close to being one of them. We saw Dr. Stewart and Dr. Yang yesterday and if you noticed, the sun got just a little brighter about 2:30 yesterday afternoon. That is because they told us that all of Patty's tumors have shrunk 26%!!! The first thing Dr. Yang did when he walked in the door was to give Pat a hug. He and Dr. Rosenberg both are extremely excited about this. Apparently they were discussing Patty's progress on rounds up on the floor in the morning before we got to the hospital. We stopped up to see the gang on 3NW and all of the nurses were excited to see her as well. We’ll be going back in another month for more scans, after all it is research and she is a pioneer! Don't know what else to say, just thank you everyone for all of the prayers, cards and words of encouragement. And thank you Lord for watching over Patty. Have a wonderful day!!  "

The shrinkage is so exciting. This means that Dr. Roesenberg's theory of secreting IL-12 from engineered T-cells is a plausable therapy.

Redirecting the Melanoma Tumor’s Microenvironment in Favor of the Activation of T-cells 



Best Regards,


Jimmy B 

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Replies by: Anonymous, sheri47

Woke up today with small red spots all over my body, now growing and merging into larger red spots. Ugly.

Skin feeling very hot and a bit itchy!

Just like for Sorafenib which I had to stop.

Trying corticoïd cream but I suspect it won't be enough.


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drujienna's picture
Replies 11
Last reply 3/16/2012 - 12:40pm
Replies by: Anonymous, davet

For months people have been asking this question.   His office does not tell you that he's been gone since the end of May until you actually arrive there for your appointment.  In the beginning patients were told that he was "taking a little time off and letting another doctor see patients."  But it has been five months now since he has been at the Angeles clinic and there is no forwarding address.  Where is he?  His medical liscence has not been revoked.  No hint of scandal has made it to the newspapers or the MRF and its associates.  Where has he gone?  People in the middle of treatment need him!

Any info would be appreciated.


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Richard_K's picture
Replies 1
Last reply 3/16/2012 - 11:26am
Replies by: Shelby - MRF

There is a 15-minute online survey ( that includes questions about your diagnosis, the steps you’ve taken to learn more about melanoma, and what you feel could have helped you along the way.  The survey is also interested in hearing from those whose lives are affected by advanced skin cancer – so please feel free to pass the survey along to your family, friends and others who have advanced skin cancer too.

The MRF is a partner in this survey but I did not find any information posted on this site.  If it is, sorry for the duplication.


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ElaineLinn's picture
Replies 5
Last reply 3/16/2012 - 9:22am

Its been a while since I have been on here to update you all. But it has been a hard few weeks in the hospital. I finally got to go home on Monday. I decided to do a part of a clinical trial called Bendamustine , I had to have 3 IV infusions before the brain surgery , then after the last infusion I had to go directly to surgery.. So far so good very little sideeffectrs But still particially blind because of the tumor, but the dr. seems to think that my sight willl return, but if not I am ok with that as long as I am alive to raise my kids. They put my IPPI on hold untill after the radiation on the brain then I should be back to that. Lets pray that the 2 IPPI will cure my lung mets so I can work on this brain now . Thank you all for your thoughts and prayers. Also I am sorry for all the miss spellings but I cant see to well LOL

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Redirecting the Melanoma Tumor’s Microenvironment in Favor of the Activation of T-cells 




Studies show that regulatory T (Treg) cells play a detrimental role in cancer immunotherapy because these cells accumulate in the tumor microenvironment and suppress immune responses. Moreover, Researchers recently showed the presence of tumor-specific CD4+, CD8+, and γδ Treg cells in several types of tumors, suggesting that they can induce antigen-specific, local immune tolerance at tumor sites. Tumor-associated macrophages (TAMs) and myeloid-derived suppressor cells (MSC) could also play an important role in inhibiting immune responses and chronic inflammation, which has been linked to cancer development and progression. Both tumor-associated macrophages/DCs and MSCs promote tumor growth either by secreting immunosuppressive cytokines, including interleukin 10 (IL-10), transforming growth factor-β (TGF-β), and IL-1β, or by inducing Treg cell differentiation. More importantly, tumor cells have been shown to express inhibitory factors (IL-10, TGF-β, GAL-3, and IDO) to alter T-cell function. Immunosuppressive factors, such as FasL and TGF-β expressed by tumor cells, may directly inhibit tumor-reactive T-cell expansion or induce T-cell apoptosis. A recent studies suggest that tumor-associated galectin-1(Gal-1) and or Gal-3, a membes of the animal lectin family, contributes to tumor immune escapes by inhibiting the function of tumor-reactive T cells. Therefore, tumor cells constantly modulate T-cell responses by presenting tumor antigens and secreting immunoregulatory cytokines. Understanding the interplay between tumor cells and immune cells in the tumor microenvironment is essential for the development of effective cancer immunotherapy.

Researchers tested whether Gal-3 could activate other tumor-reactive or antigen-experienced T cells. Five melanoma-reactive T-cell lines, one prostate cancer–derived T-cell line, and two breast cancer–derived T-cell lines were selected and cocultured with 293 cells expressing Gal-3 for 12 to 16 h. they found that Gal-3–expressing 293 cells activated all of these T-cell lines to secrete IFN-γ but failed to activate naive CD4+ and CD8+ T cells purified from peripheral blood mononuclear cells (PBMC) of healthy donors . Suggesting that naive T-cell activation requires a strong T-cell receptor (TCR)-mediated activation, whereas tumor-reactive T cells can be readily activated by Gal-3. They also evaluated the cytokine profiles of CT28 T cells on Gal-3 stimulation. Gal-3 induced a high level of IFN-γ, granulocyte macrophage colony-stimulating factor, and low to middle levels of IL-4, which is similar to cytokine production induced by anti-CD3 (OKT3) stimulation. This is an indication that the Gal-3 complexes with the TCR synapse causing impaired signaling. Gal-3 binds and activates tumor-reactive T cells through carbohydrate-specific interaction.

Galectin-3 (GAL-3) localize mainly in Tumor cells, macrophages, epithelial cells,
Fibroblasts , and activated T-cells. Although galectin-1 has been shown to induce T-cell apoptosis, galectin-3 has conversely been shown to prevent cell death induced by Fas ligation. Galectin-3 has been shown to rescue cells from apoptosis by protecting against alterations of the mitochondrial membrane and formation of reactive oxygen species. A growing body of evidence supports the involvement of galectin-3 in tumor growth and metastasis.

Galectin-3 and IL-10 receptor needs to be inhibited to break the rest of the tolerance so the immunotherapy can have a greater effect with a better response rate.

Radiation + Yervoy + Anti-PD-1 + Anti-IL-10 receptor + GAL-3 Inhibitor= Robust immune response

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~
Take Care,
Jimmy B




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