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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yoopergirl's picture
Replies 1
Last reply 3/22/2012 - 11:11am
Replies by: Maxximom

The eye doctor is still  going to continue the prednisone drops along with the dilating ones for 2 more weeks and he again said that I should not have the last treatment of ipi. The oncologist who first treated me with the ipi called today, actually his nurse did and they would like to follow my care along with Dr Mc Farland form UW Madison, she said that I did the right thing by going to a Melanoma specialist and that I can get into a clinical trial at Madison but not at their clinic. He is the head of research so I imagine he would like to follow my care, and I thought that was very good of him to do that and also said if I ever need anything done locally they would be happy to do that for me. So I guess I am covered in both places. Now just have to wait until the 26th for the MRI and car scan results, which I will have that same day.

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HoolieB's picture
Replies 9
Last reply 3/29/2012 - 3:48pm

I stumbled across the site in a search and have been reading the wealth of wonderful information on this board.  One thing that caught my eye was a couple of responses that included (paraphrased) "...Clark rating is no longer considered important unless it's with a thin melanoma..."  All my searching here couldn't find an explanation for that statement.  I was hopeful somebody might be able to shed some light on the relationship between Clark numbers and thin melanomas.  My melanoma was Breslow "at least" .42, Clark III. 

Thank you!

Julie

"May the odds be ever in your favor."

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Maxximom's picture
Replies 11
Last reply 3/28/2012 - 2:18pm

I was admitted to OSU James Cancer Center Friday night to start IV Steroids for severe Diarrhea. I started to have diarrhea about 5 days before I was due to have my second Ippi infusion. I did have the second infusion last Thursday and then the next day, the diarrhea really accelerated and I was started on 20mg prednisone..it didn't help very much and they upped the dose to 20mg in the am and 10mg at night and still it was bad.I had to stay home all this time as I needed to be near the bathroom. I was hoping that Dr Kendra would get me onto Endocort.. but that didn't happen. Friday I got the call to be directly admitted to the hospital to start the IV steroids.Things slowed down..but I still have diarrhea even with the IV steroids.Yesterday they let me go home after things got down to 7 movements a day..and started me on 1200mg of Prednisone.I am due to have Ippi #3 next Thursday..but of course that isn't going to happen with such a high dose of Pred.I believe that you need to be on 7mg or less to get the Ippi..I will take a long time to get weaned off such a high dose and I fear that I will have to discontinue the Ippi. I am BRAF negative and that doesn't leave many options open to me.I would hope to get into a anti PD1 trial..but there is  nothing near by to me.I really want to continue the Ippi..if they will let me..I can deal with the diarrhea  as unpleasant as it is.I know that many of you have gone through this..any advise or encouragment to very welcome..I am starting to think that contsipation is a beautiful word..LOL

Joan

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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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I have heard that some are two years survivors at stage IV, on this trial. Others say the trial for this combo started in late 2010. Does anyone know?

The history of the world is the battle between superstition and intelligence.

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Lilylove414's picture
Replies 2
Last reply 3/26/2012 - 9:39am
Replies by: Lauri England, UrsulaZ

So I finished my first month of treatment about 2 weeks ago. I am so glad it's over! It was a ROUGH month! The first week was all throwing up, then I got a week off to recover. Then I was on half the original dose for a week, then 85% of the dose. The last week was the full dose but instead of throwing up I experienced the symptoms I was supposed to...ish...which was a high 101-102 fever each night. Now I'm waiting for my treatment to be shipped in vials to the doctors so they can show me how to give myself injections 3 days a week. But it's back to half the dose...which is awesome! God has been so good to me and I have a lot to be thankful for. Oh, and I lost 10 pounds that month! But now that I'm "on vacation" I'm quickly gaining it back. Gotta start eating right and exercising...bummer. ;) Well lovelies, keep fighting, keep protecting your skin and keep laughing!

God bless,
Jaimy

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

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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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Anonymous's picture
Anonymous
Replies 8
Last reply 7/16/2012 - 11:50am
Replies by: Bob B., Janner, Anonymous, washoegal

The bright, young pathologist who did my lab work following last week's superficially spreading melanoma encision (SSM) shared some candid remarks with me.   He explained why "completely excised" does not necessarily mean, well, completely.    Why his clinical clients' legal exposure and the commercial necessity to keep them happy encourages absolutist pathology results rather than insights.   Why a completely excised tumor may well need to be re-excised (as in my case).   And why histological reality can be more "grey" than "black & white".   Interesting.   

I put my foot in my mouth with my first post "Overtreatment?"  The fact that I have the luxury until now of only a second primary, both Stage 1, contributed to  hubristic insensitivity.   I will try not to make the same mistake again. 

But if someone is interested in a superficial take on the reality check the pathologist gave me regarding my particular case, let me know.  I found it fascinating.  Others will not find it either interesting or particularly PC. 

The Only Good Legend is a Dead Legend.

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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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cody's picture
Replies 7
Last reply 3/23/2012 - 1:23am

I've been reading posts on this site for several years now, and wanted to let everyone know what an AMAZING group of people I think you all are. I see the term "Melanoma Warrior" used quite a bit and I have to say that that is an incredibly accurate description. I know this because of your stories, attitudes, kindness to each other and your incredible resolve! And it has just dawned on me this past week that my wife is one of you!!

She was diagnosed with Stage 2B melanoma in June of 2007. She had an ulcerated nodule removed from the back of her left calf and two seperate Oncologists decided that treatment wasnt necessary at the time. Close monitoring was the answer. Since then shes had three seperate operations to remove metastatic melanoma in her right arm and left leg. It has obviously travelled through her body to get to these other locations, so we have been told she is now Stage IV and her Doctors in Boston have told her they expect it to come back. It's really a matter of when and where. She went through interferon treatment last year, but it was too tough on her liver and they stopped the treatment a little over halfway through. A PET scan a couple weeks later revealed a small tumor in her calf, so it obviously wasnt working anyway. We were in Boston just last week for the results of a March 7th PET Scan and Brain MRI. To say we were nervous and scared is an understatement, but I'm sure I don't have to tell anyone that here on this board. The scan came back clear so we have another couple of months before the fear starts setting in again. With that in mind, I just wanted to say I wish everyone the best and not a day goes by I don't think about the battle everyone is going through. My thoughts and prayers are with you all.  

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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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Wilfred's picture
Replies 6
Last reply 4/24/2012 - 9:18pm
Replies by: Wilfred, gabsound, Linny

While spreading sunscreen (SPF 50) on my left bicep in February - in Jamaica at the Jamaica Inn where I thoroughly enjoyed myself - I notice a lump that had not been there before. I showed it to my wife and to my sister-in-law who is a nurse. They thought, as did I, that it was something to report to my doctor as soon as I got back to the US. WE got back to MD on Sunday evening, Dr D saw me at 3:00pm on Monday. The lump is about 1 inch in diameter and on the inside of my left arm. Dr D examined me and took a cell sample by aspiration. He gave me an order for a PET/CT and asked me to get it done ASAP. On Thursday of that week, 3/8/12, I had the PET/CT done at Capital Health Hopewell Hospital.The next day Dr D called to say the results were not good and that he wanted me to see Dr Scharfman at Hopkins.  I then went to Kentucky to spend a week as chaperone to some Portsmouth Abbey School students working on an Appalachia Service Project. Yesterday I picked up some CDs of the scan from the hospital to take with me to Dr Scharfman's on Thursday. A copy of the written report was in the envelope.

The report is 4 pages; good news can be reported in a sentence. There is a lot of terminology in the report that I do not understand. While reading it again last night,I used Google search to help me with various terms. For example: an SUV of 9.4 in my left bicep, intense uptake in the region of the pancreatic tail, focal abnormal uptake right hiliar region with suspected nodule of 7mm and an SUV of 15, intense focal uptakes within the left upper abdomen and mid abdomen, uptakes in my legs, lungs, colon. There are mentions of other uptakes in other places as well. The part that really bothers me is the in the Impression section: "Multiple focal areas of increased metabolic activity consistent with metastatic melanoma."

So...finally... I get to my point. What are the questions that I should ask Dr Scharfman on Thursday afternoon? This is the eighth time the M word has been used next to my name. I am positive and upbeat, worked my *** off down in Kentucky and told funny stories to the kids. My wife and children are very supportive and I am not afraid of the future. But I do want to understand what all this means before I meet with Dr Scharfman. Thanks, Wilfred

If you fight, you may lose, If you don’t fight, you will lose.

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AlisonC's picture
Replies 4
Last reply 3/21/2012 - 10:02pm

Hi everyone

My friend Dave - who posts here as DavidfromSingapore - is in the hospital and an MRI yesterday showed multiple new lesions. It looks like those of you who posted below about WBR were on the right track.

So any advice from here on ?  They are going to do the final 3 WBR treatments, cease temodar and return to zelboraf, although zelboraf doesn't seem to have held it in check.  The feeling is that there isn't time to start Ipi and have it take effect given the speed of progression.

your advice thoughts on any medications to (a) help fight the mel and (b) keep him comfortable ?  He is on dex but getting a lot of breakthrough headaches and pain which are preventing him (and his wife) from resting. Not wanting to throw in the towel treatment wise but being very realistic.  Any suggestions for possible avenues and advice on what has helped you/your loved ones at this stage ?

Many thanks in advance for any replies

AlisonC

Stage IIIB

NED since 2001

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JakeinNY's picture
Replies 13
Last reply 7/14/2014 - 9:02am

This study was published last year. Although none of the patients were melanoma patients, it doesn't seem to be a stretch that it may help mm patients.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

I personally am already on a carb and sugar restricted diet and although this is such a small study, it is promising and is something worthwhile mentioning.

Do the best you can.

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