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

http://sto-online.org/node/27816?tid_op=or&tid=All&tid_1_op=or&tid_1=All&tid_2_op=or&tid_2=141&field_asset_search_value_op=contains&field_asset_search_value=John Murphy

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "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

http://melanomamissionary.blogspot.com/ 

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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.

Drujienna

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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 (www.skincancersurvey.org) 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.

Dick

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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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BellaSusan's picture
Replies 10
Last reply 3/15/2012 - 5:43pm
Replies by: Anonymous, hope4cure1, BellaSusan

Comments regarding Dr. O'Day and the efficacy of The Angeles Clinic have caused me to reflect on what I know to be true.  I am a six year Melanoma Vet, four of which have been spent dealing with metastatic disease in the liver, spleen, lungs and brain.  Through it all, I've learned one thing.  While it is nice to work with a doc with great communication skills and bedside manner; it is far more important to work with docs who have very large toolboxes with as many treatment options as possible.  Since my life has depended on clinical trials, I must add one more necessary point.  Make sure the Melanoma specialist’s clinic has stringent Standard Operating Procedures to ensure that the pharmaceutical manufacturer's protocol is being followed. You don’t want to risk the FDA closing the clinic’s trial participation due to breach of protocol.
 
My experience with The Angeles Clinic might help you decide whether to seek treatment there. Three important observations I’ve made are:
 
1.  The Angeles Clinic has one of the largest Melanoma Treatment Toolboxes in the US.  Post Ipi and after my third hit with brain mets, I had to get on the first round of the expanded access trial, for the BRAF inhibitor, PLX 4032/RG7204/Vemu, pronto.  Dr. O'Day's younger associate, Dr. Omid Hamid, was conducting the Vemu trial. After working with Dr. Hamid over seven Vemu cycles, I can unequivocally state that Dr. O'Day has measures in place to ensure high professional standards are maintained at the clinic.  
 
PLEASE do not interpret from my comments that Dr. O'Day is stepping down.  As far as I know, he is only on an extended leave.  He has however had the foresight to invest in the professional resources necessary for temporary coverage as well as future growth.
 
2.  Dr. Hamid has a decade of Melanoma treatment experience that happens to be very patient care oriented. While he has his own unique set of skills and does not parrot Dr. O'Day, he also maintains and furthers the high standards Dr. O'Day set for the clinic.  This is the kind of doc who responds to your text so quickly that you wonder when exactly he sleeps.  Currently, Dr. Hamid has seven viable options from the latest R&D, should I relapse.
 
3.  Dr. Hamid has been dogged in his pursuit of clinical trials for The Angeles Clinic.  His youth and stamina are key because after clinic hours he researches the R&D landscape looking for the best options possible that match his patient profiles.  When he sits down with pharmaceutical trial directors, they know Dr. Hamid will deliver results that are mutually beneficial to the clinic's patient base as well as pharma.
 
So am I dedicated to being Dr. Hamid's patient for life?  Given what I have stated prior, the only feasible answer is "No".  I am, however, Dr. Hamid’s dedicated patient for as long as he responsibly provides me with the best options possible.  I hope my comments will help you in your due diligence.

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Eileen L's picture
Replies 5
Last reply 3/15/2012 - 4:52pm

Hi to all. I am a Stage IV survivor, over four years since my Stage IV diagnosis. As some of you know, I had an unusually good response to Nexavar and have been on the drug with minimal side effects since initial treatment. I did get tested a few years ago and I am BRAF positive.

I am now faced with an adrenal gland tumor that has been there for three years, not doing much of anything until my last scan showed an almost doubling of size, It is now 5.4cm. Melanoma was confirmed by a fine needle biopsy, got the path report late last week. The plan is to remove that sucker and stay on the Nexavar. I am trying to avoid moving to another treatment for as long as possible, since I also have multiple sclerocis and psoriasis, both autoimmune diseases, that make me a questionable candidate for ipi and other immune based therapies. So my treatment options are limited and I want to preserve them for as long as possible. The thinking is that since I haven't had any new tumors in three years that perhaps the adrenal gland tumor were some errant cells and the Nexavar is still giving me significant benefit. The only other tumors I have had this time are two in my lungs that shrunk considerably during initial treatment and haven't grown for about three years. At my last PET scan they did not light up at all, so we think they might not be active at all. Both my general oncologist and Dr. Daud, at UCSF Melanoma Treatment Center, conccur with this plan. Which makes me very happy, because this is the direction I wanted to take when I heard the news about the tumor growth.

 I am hoping to hear in a few days what surgical technique is recommended. My oncologist is talking to the SRS guys, the laproscopic guys, and the regular surgical guys to see if I am a candidate for a less invasive surgery than just cutting me open. In the meantime I am concentrating on having lots of fun, being with the people who I love, and trying to get my taxes done!

BTW, are there any fellow Melanoma Warriors out there who are Kaiser patients in the SF/Bay area? Haven't met anyone in quite awhile and would love to network with you!

Thanks to so many on this board who have provided me with information and support over the last four plus years. I have an intuition that I have many days, months and perhaps years of life ahead of me, and I intend to live each day as fully as possible.

Love to all!

Eileen L

 

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yoopergirl's picture
Replies 4
Last reply 3/15/2012 - 4:20pm

First of all I like the doctor, he is much more informed about Melanoma but he did tell me that he doesn't think the Yervoy worked for me since I have 4 new growths on my arm, he is ordering a cat scan and a MRI for the 26th, said a pet scan does not look at the brain. Also said he would have done the same thing as the other oncologist did, put me on high strength prendisone since my stay in the hospital was one of the bad side effects. I chose to stay with this doctor in Madison. He did mention maybe chemo or PD 1 if the yervoy did not work. I did read where sometimes the tumors grow while on this drug but he did not seem to think so, he will be consulting with Dr Albertini on Thursday. I came out of there pretty down in the dumps but I have to pick myself up and fight this cancer with everythin they can give me. 

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I am a family nurse practitioner who's good friend lost his mother to melanoma.  He was nine years old and his mom was in her early thirties.  Despite this family history and my friend's objections, his two daughters (both in their 20's) regularly tanned both on the beach and in tanning booths.   Their parents dragged them in to a dermatologist during their late teen years, who neither discussed their family history, suntanned skin, nor UV radiation exposure; and who told them to come back for another skin check in 5 years.  Needless to say, my friend and his wife were filled with dismay.  

I am also a board member of the National Academy of Dermatology Nurse Practitioners, because it is clear that melanoma is optimally  treated when detected early...and, primary care nurse practtioners and their patients are the people who need to detect melanoma in its earliest stages.  Because 41% of  patients in the U.S.A. lack access to dermatology specialist care, it is imperative that the public and primary care providers know everything possible about melanoma detection and treatment.  

There is no reason that only dermatology specialists should limit information to generalists or the patients and their families.  For this reason I invite everyone who wishes to learn more about current Melanoma treatment options, dermoscopic surveillance for skin cancers, treatments of other skin cancers, and Melanoma research to come to our conference in Clearwater Beach, Florida.  You do not have to be a nurse practitioner or medical provider to attend.  We welcome you to become empowered, check out the program and consider taking an educational trip where you can hear what leaders in the Melanoma treatment world say to other healthcare providers about Melanoma and other skin cancers.  Here is the web address: http://www.nadnp.net/conference-overview.html

I look forward to meeting you at this wonderful conference on the beach in Florida....Sunblock and Sunblocking Clothing required.

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bikerwife's picture
Replies 5
Last reply 3/15/2012 - 10:44am

My name is Belva I am the wife of Lynn he is battling melenoma. I am new to this forum. Looking for support in dealing with dreaded disease. I feel alone and helpless. We have had WBRT by a doctor who never had any dealings with melanoma. Have had gamma knife to five lesions on brain. That was a breeze.

We have transferred to musc in charleston south carolina. Our new doctor and his staff are wonder. He is a melenoma specialist and very up to date. Had 3 ippi treatments after. Second noticed new tumor growth. Dr said this happens at times and didn't seem concerned. Iasked about blood work said it was good.

This is scary to watch. Thanks for listening and may God be with each of you. God heals and I'm holding on to this.

What God leads u to he will. Lead you through

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Kimberly Duncan Watts's picture
Replies 3
Last reply 3/15/2012 - 6:51am

Wow I couldn't believe they were so big. No wonder I had such pain! Thx to all for your responses! I appreciated each of them. Hoping now I really am NED! Appt at Roswell the 21st, will ask about radiation. And I've never been tested for ckit so that's next too! Prayers n positive thoughts to all.

I can do all things through Christ who strengthens me.

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LynnLuc's picture
Replies 3
Last reply 3/15/2012 - 5:34am
Replies by: aldakota22, MaryD, melmar

My scans are fine, blood work fine...had my treatment...here is the skinny I will share...
Saw Dr Weber and he thinks my rash/hives on my hands and soft parts of my feet of
probably side effects from Anti-PD-1. It has been there since mid December.
He says I am doing fantastic and would hate for me to stop...I told him I
can live with it...but so far my hands and feet have NOT gotten worse since
my infusion today, so I am hoping it is NOT related!
....in my trial it is required to be NED ( no evidence of disease)
which could be by chemotherapy, surgery or immunotherapy or radiation.
Some who enter the trial start right out of surgery and such, so their NED
is somewhat questionable, if you know what I mean. Anyways, 29 people
are/were enrolled. 2 progressed and died of brain mets.
1 progressed and was put on another immunotherapy and is again NED. 1
progressed ( and this is the kicker....he now experienced spontaneous
REGRESSION of his melanoma! 25 remain stable and NED.
This is week 72 of my Anti-PD-1/vaccine trial (MDX 1106)

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

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Terra's picture
Replies 5
Last reply 3/14/2012 - 11:34pm
Replies by: momof2kids, Lisa13, WendyPam

Does anyone have a number on the response rate of a reinduction of yervoy, I have read on mpip it is 40% but our doctor said 10%?

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