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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Roxy1453's picture
Replies 2
Last reply 3/21/2012 - 9:24pm
Replies by: Roxy1453, kylez

I had my PET Scan today. There are no new spots and the one I have on my leg had gotten smaller. My Dr. Says that the 2 treatments of IPI that I have had are working. I haven't had a treatment since Dec 29 because it caused me to have colitis. The scan showed that the colitis is gone. He wants to give me a couple more weeks before giving more IPI to make sure the colitis heals more. He talked about the new study on radiation after IPI. We have decided to try it. I go in next week to get things ready to go and then the following week will the radiation. Twice a week for 2 a half weeks.

I pray this gets rid of my Mel and I can be NED! I also hope this will work and can give hope to others!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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ElaineLinn's picture
Replies 5
Last reply 3/21/2012 - 3:56pm

I ha ve done so well with the first IFFi injection. Blood work was all great on my 2nd dose apptntment. Sob the dr. gave me my second dose on March 1sr and all went well. UNTIL March 2nd just got my kids to bed around 8 , my oldest son was there with me when I went into convultions. So a quit trip to close hospital and was transferedd 3 hours away to columbus Ohio where my doctor is . I find tha they think that I have some lesions on my brain causing it to swell. So today I have been put throught the ringers MRI, 6 different drawing of the blood, so many different anti sezeisure meds that I for got what they were.  Has anyone else been trought this.   I am asking for all the prayers I can get!

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Lilylove414's picture
Replies 15
Last reply 3/21/2012 - 12:17pm

So I've had MM for about 3 months now, I was diagnosed September 12th and I have stage 3. While my family and friends have been great, none of them can really understand how I feel. Praise God this site exists! I'm 25, the youngest of 3 and I'm about to start a year of Interferon in January since I already had my surgery on my arm and 2 lymph nodes out. I'm finally over the feeling of putting my life on hold and I now know it's just taking the scenic route. I believe in Jesus Christ as my personal Lord and Savior, and I know He will bring me through this! If you believe in Jesus as your Savior then you know how important knowing God is! If you would like to know Him then hit me up! We're all in this together!1

God bless,
Jaimy

If God is for us, who can be against us?

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JoshF's picture
Replies 1
Last reply 3/21/2012 - 7:58am
Replies by: FormerCaregiver

Had scan this past week. Just about a year into it and another clear scan. Also had genetic testing done BRAF was negative. Doc is going to continue to  treat as Stage 4 in regards to  follow up as with never finding a primary he would like to stay aggressive. Nearly a year later but I'm still confused. I'm blessed and thankful that I found this site and all the warriors on it. I'm sending positive energy out to all of you...keep on!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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CF1975's picture
Replies 3
Last reply 3/21/2012 - 7:23am
Replies by: Richard_K, CF1975, deardad

My father in law recently had his spleen and piece of his lung removed. He was put on Zelboraf as an experiment to prevent the melanoma from coming back. We live near the water and we are constantly out doors. With summer approaching, we are finding it very difficult for him to be out doors. Does anyone have any suggestions while on this drug to help with protection from the sun. He has become so sensitive that he is afraid to go out doors. Anyone find a good sun block that might work better than others? Or any suggestions at all would be grateful.

Thank you

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bcl's picture
Replies 3
Last reply 3/21/2012 - 7:19am

http://www.cbc.ca/news/canada/british-columbia/story/2012/03/20/bc-tanning-bed-ban.html

 

 

 

British Columbia became the latest jurisdiction to ban children and teenagers from tanning beds on Tuesday.

Health Minister Mike de Jong says the increased risk of cancer connected to the beds is too great to take less restrictive measures, such as requiring parental consent.

Speaking at the BC Cancer Agency, he said the government will pass regulations by the fall preventing children under 18 from using tanning salons.

De Jong said teens can get a prescription if UV tanning is required for medical reasons, such as to treat psoriasis.

Kathleen Barnard, who was diagnosed with malignant melanoma in 2003, welcomes the announcement.

"I became tanning obsessed as a teen," she said. "I have had four different treatment protocols, two blood transfusions, three major surgeries."

'I would rather be alive'

Barnard was given nine months to live but beat the odds and founded Save Your Skin, a volunteer organization dedicated to eliminating melanoma.

"I know now I would rather be alive with the skin I was given than die with the skin I so desperately wanted to have," she said.

But Steven Gilroy, the executive director for the Joint Canadian Tanning Association, says the province should do more to regulate the equipment used and the training standards instead of banning teens.

"Parents make that same choice every time they let their child go out to the beach or go on a sunny vacation," he said.

"About three to five percent of our industry is to do with under 18. They only come in for prom or with parents for vacation."

The decision comes after the government consulted the medical community, municipalities and the tanning industry, with all but the industry association calling for a ban.

Nova Scotia already bans anyone under 19 from using tanning beds, and the city of Victoria implemented its own ban last year.

 

 

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QueenBZ's picture
Replies 5
Last reply 3/21/2012 - 6:42am

I hope I am not overstepping proper protocol but I had noticed KatyWI had not been active on the board for a while.  Sadly, she passed away Friday, March 16th.  I was in email contact with Katy on occasion being that we live in such close proximity.  She had completed the WI Ironman on September 11th with the proceeds going to MRF and her positive attitude about life just struck a cord with me. So hard to believe in just 6 months someone can go from the success of completing the grueling test of endurance of an Ironman to succumbing to this beast.  I have such a heavy heart and my prayers are with her family.

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sheri47's picture
Replies 3
Last reply 3/21/2012 - 4:55am

a little info first, my moms first mm was in 1982 left heal had it removed   stage 1 level 5.   2001 encased in a lymphnode in her stomach surgery no other treatment she refused it, 2005 back to the same heal. same thing in 2009, with surgery to remove,  still only treatment was surgery,

2011 back again same spot on foot, now they want to remove the leg under the knee , she refused that, took new drug that starts with  a Zo  was working but she stopped it said it messed her stomach up , now the found a 2 cm mass in right tempral part of brain one dr said yes its mm and one said he did not think so and he wwould not know unless he removed it,   all she heard was it may not be cancer and went home to do nothing  she she does not want to have surgery and she put it in Gods hands ,  so i guess this is my ?  with the tumor being 2cm  how long would she have  by doing nothing. thank you

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Lynn1962's picture
Replies 3
Last reply 3/20/2012 - 11:31pm

Well the right groin lymphenodectomy in January went well -- they took 15 out altogether, and the only one that was positive was the one original sentinel lobe....and that one had just a very minute number of micro mets. Currently have some mild lymphadema that is being address with massage and PT. Feeling great at this point, and went back to work yesterday!

Getting ready to start Sylatron next week, and was wondering if anyone could share their experiences and strategies for dealing with the side effects. Hopefully, I will be able to tolerate it long enough for it to be beneficial...

Also, for those of you who sit  and work at the computer all day, what worked best to keep the leg swelling down as far as seating, elevation, movement etc.?

Thanks! Although I don't post often, I do read the posts and I am truly inspired by the people on this board! It is a great resource!

Lynn

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Judy D's picture
Replies 5
Last reply 3/20/2012 - 6:20pm

Thought I could go to Hawaii with my daughter especially if I was carefull, WRONG!  I stayed under the umbrella, used high spf sunsreen but still got severely burned or more like sun poisoned.  Severe blistering on my feet, swelling and rash on arms and back. I just want to warn others to be extremely careful so that this wont happen to you.  Vacation to Mexico not going to happen.

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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ScienceDaily (Mar. 19, 2012) — Mayo Clinic researchers have trained mouse immune systems to eradicate skin cancer from within, using a genetic combination of human DNA from melanoma cells and a cousin of the rabies virus. The strategy, called cancer immunotherapy, uses a genetically engineered version of the vesicular stomatitis virus to deliver a broad spectrum of genes derived from melanoma cancer cells directly into tumors. In early studies, 60 percent of tumor-burdened mice were cured in fewer than three months and with minimal side effects.

 
 Results of the latest study appear this week in the journal Nature Biotechnology.

"We believe that this new technique will help us to identify a whole new set of genes that encode antigens that are important in stimulating the immune system to reject cancer. In particular, we have seen that several proteins need to be expressed together to generate the most effective rejection of the tumors in mice," says Richard Vile, Ph.D., a Mayo Clinic researcher in the Department of Molecular Medicine and a coauthor of the study, along with Jose Pulido, M.D., a Mayo Clinic ophthalmologist and ocular oncologist.

Dr. Vile's success with melanoma adds to Mayo Clinic's growing portfolio of experimental cancer vaccines, which includes an active clinical trial of vesicular stomatitis vaccines for liver cancers. Future studies could include similar vaccines for more aggressive cancers, such as lung, brain and pancreatic.

"I do believe we can create vaccines that will knock them off one by one," Dr. Vile says. "By vaccinating against multiple proteins at once, we hope that we will be able to treat both the primary tumor and also protect against recurrence."

The immune system functions on a seek-and-destroy platform and has fine-tuned its capacity to identify viral invaders such as vesicular stomatitis virus. Part of the appeal of building cancer vaccines from the whole spectrum of tumor DNA is that tumors can adapt to the repeated attacks of a healthy immune system and display fewer antigens (or signposts) that the immune system can identify.

Cancers can learn to hide from a normal immune system, but appear unable to escape an immune system trained by the vesicular stomatitis virus with the wide range of DNA used in the library approach.

"Nobody knows how many antigens the immune system can really see on tumor cells," says Dr. Vile. "By expressing all of these proteins in highly immunogenic viruses, we increased their visibility to the immune system. The immune system now thinks it is being invaded by the viruses, which are expressing cancer-related antigens that should be eliminated."

Much immunotherapy research has slowed because of researchers' inability to isolate a sufficiently diverse collection of antigens in tumor cells. Tumors in these scenarios are able to mutate and reestablish themselves in spite of the body's immune system.

The study was a Mayo collaboration with professors Alan Melcher and Peter Selby at the Leeds Institute of Molecular Medicine, University of Leeds, U.K. They were also co-authors.

Other coauthors of the article are Timothy Kottke; Jill Thompson; Feorillo Galivo, Ph.D; Rosa Maria Diaz; Diana Rommelfanger-Konkol; Elizabeth Ilett; and Larry Pease, Ph.D., all of Mayo Clinic; Hardev Pandha, M.D., University of Surrey, Guildford, U.K.; Phonphimon Wongthida, Ph.D., Department of Virology and Cell Technology at the National Center for Genetic Engineering and Biotechnology, Pathumthani, Thailand; and Kevin Harrington, Ph.D., Institute of Cancer Research, London, U.K.

The study was funded by the Richard M. Schulze Family Foundation, Mayo Clinic, Cancer Research UK, the National Institutes of Health, and a grant from Terry and Judith Paul

http://www.sciencedaily.com/releases/2012/03/120319111542.htm

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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Vemurafenib Extends Survival To 16 Months For Some Patients With Metastatic Melanoma http://www.medicalnewstoday.com/releases/243066.php

20 Mar 2012

An international team of researchers from the United States and Australia, including researchers at Moffitt Cancer Center in Tampa, Fla., have found that the oral BRAF inhibitor vemurafenib (PLX4032) when tested in a phase II clinical trial offered a high rate of response in patients with previously treated metastatic melanoma and who had the BRAF mutation. More than 50 percent of the patients in the trial had positive, prolonged responses and a median survival of almost 16 months.

The study was published in a recent issue of the New England Journal of Medicine.

According to study co-author Jeffrey S. Weber, M.D., Ph.D., director of the Donald A. Adam Comprehensive Melanoma Research Center at Moffitt, approximately 50 percent of melanomas harbor the activating (V600) mutation threonine protein kinase B-RAF. Unfortunately, treatment options for these patients are "limited."

The BRAF inhibitor vemurafenib had been found effective in phase I and phase III trials. However, to determine the overall response rate in previously treated stage IV melanoma patients, the researchers designed a multi-center, phase II trial with 132 patients with previously treated BRAF V600-mutant metastatic melanoma. The trial was designed by senior academic authors and representatives of the trial sponsor, Hoffman-La Roche, and was open to adults over the age of 18 with histologically proven stage IV melanoma, progressive disease, and at least one prior systemic treatment.

"Few patients with metastatic melanoma bearing the BRAF V600 mutation have a response to systemic chemotherapies," said Weber. "Additionally, most have a median survival of only six to 10 months. However, this study yielded an overall response rate of 56 percent and a median survival of nearly 16 months."

The 56 percent response rate for this study was higher than the response rates reported on studies with other therapies for a majority of patients, such as the monoclonal antibody impilimumab. Once more, the response for patients in the vemurafenib phase II trial was "rapid," said the study authors, with less than 15 percent of patients having had disease progression at their first evaluation.

"This trial showed that vemurafenib has clinically evident anti-tumor activity in metastatic melanoma, and that response rates are higher than those associated with previously used treatments," concluded Weber.

The authors reported that toxic effects were common, but not severe or life-threatening in most cases. They added that, as with most targeted therapies that block a driver oconogene, cancer cells can develop resistance with continued dosing and the molecular mechanisms of vemurafenib are "under investigation" at Moffitt by Keiran S. Smalley, Ph.D., and at other institutions to answer questions about resistance.

References:
H. Lee Moffitt Cancer Center & Research Institute

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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JoshF's picture
Replies 6
Last reply 3/20/2012 - 7:13am

OK...finally get some scanziety. Tomorrow I have 3 month scan follow up which puts me just about 1 year mark. I'm not sure what year 2 plan is as medical oncologist thinks I can go to 6months and just neck & chest. Surgical oncologist thinks I should stay on 3 month and continue neck to pelvis and braqin MRI every 6 months. Better safe than sorry I guess. I better just get through tomorrow with NED. Scan at noon...see doc at 3!!!! God Bless All!!!!

Let's work for better treatments....for a cure!!!!

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Phyllis in IA's picture
Replies 6
Last reply 3/19/2012 - 10:01pm

My son lives in Chicago and has been seeing Dr. Shea at the Univ. of Chicago.  He's been very pleased with the care, but somehow because of the way they bill and the fact that his office is in a hospital, his insurance doesn't cover his appts.  He asked me if I knew of another derm in Chicago that would be highly recommended, and I told him I would ask here.  An added plus would be if it could be someone on the north side (he lives in Logan Square).

Phyllis
 

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JakeinNY's picture
Replies 5
Last reply 3/19/2012 - 9:22pm

I haven't been on our site in several months but wanted to post that as of January 15, I am now 4 years, 3 months with clean PET/CT scans since the surgery to remove a malignancy in my parotid lymph node. I thank God and my doctors.

Do the best you can.

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