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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Lisa13's picture
Replies 13
Last reply 6/30/2011 - 11:28pm

There is so much talk about all these wonderful new treatments for BRAF positive people.  Don't get me wrong, I'm extremely happy for everyone who will benefit from these drugs - they've come a long way!  That being said, what about the rest of us?  Is research now heading into the direction of the wild types?  I got so excited about the new vervemurafenib drug until I found out it was only for BRAF positive people. I truly hope that they find something for the rest of us so that we too can get excited about something.

I asked my surgical oncologist to test my tumour for all mutations so that I could be prepared going forward.  I'm happy I signed my tumour over to the lab for TIL testing because that could be an option in another 6 months.

I'm so thankful for all these breakthoroughs. I do believe that survival stats will double within the next 5 years.

Best of luck!

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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LynnLuc's picture
Replies 1
Last reply 6/30/2011 - 7:24pm
Replies by: StevenK

Human Vaccine Used to Cure Prostate Cancer in Mice

ScienceDaily (June 20, 2011) — Mayo Clinic investigators and collaborators from the United Kingdom cured well-established prostate tumors in mice using a human vaccine with no apparent side effects. This novel cancer treatment approach encourages the immune system to rid itself of prostate tumors without assistance from toxic chemotherapies and radiation treatments. Such a treatment model could some day help people to live tumor free with fewer side effects than those experienced from current therapies.

 

The findings appear in the journal Nature Medicine.

"We are hopeful that this will overcome some of the major hurdles which we have seen with immunotherapy cancer research," says Richard Vile, Ph.D., Mayo Clinic immunologist, Richard M. Schulze Family Foundation Professor and a lead author of the study. Clinical trials could begin within two years.

Mayo's immunotherapy research led by Dr. Vile already shows promise in treating prostate cancer and melanoma. It also is a prime candidate for treatment of many more aggressive cancers, such as lung, brain and pancreatic cancer.

Among the team's findings: no trace of autoimmune diseases in the mice. The murine T-cells attacked only cancerous prostate cells, leaving the healthy tissue unharmed.

To develop this new approach, geneticists assembled snippets of genetic code from healthy human prostate tissue into a complementary DNA (cDNA) library. These bits of cDNA were then inserted into a swarm of vesicular stomatitis viruses (VSV), which were cultured and reintroduced into the test mice as a vaccine during a series of intravenous injections.

Development of comprehensive cDNA libraries from healthy human prostate tissue represents the key to successful immunotherapy. All infections, allergens and tissues, including tumors, have a unique fingerprint called an antigen -- a molecular protein tag that triggers a response from the body's immune system. Dr. Vile deployed the human vaccine prostate cancer antigens through the mutated VSV vector to raise a full-on assault from the mice's T-cells. After exposure to the mutated viruses, the animals' immune systems recognized the antigens expressed in the virus and produced a potent immune response to attack the prostate tumors.

"Nobody really 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."

Previous attempts to vaccinate against prostate and other types of cancerous tumors have been hampered largely by researchers' inability to isolate a sufficiently diverse and robust collection of antigens in tumor cells. Because of this, tumors often mutate and re-establish themselves in spite of the body's immune system.

The use of viruses as vectors for cDNA libraries overcomes the difficulty of isolating antigens in tumor cells by giving the immune system a more complete picture of the cancerous invader.

This study was a Mayo collaboration with Alan Melcher, Ph.D., and Peter Selby, Ph.D., both from the Cancer Research UK Clinical Centre at St. James' University Hospital and professors at the Leeds Institute of Molecular Medicine, University of Leeds, UK.

Co-authors of the article are: Timothy Kottke; Jose Pulido, M.D.; Feorillo Galivo, Ph.D.; Jill Thompson; Phonphimon Wongthida, Ph.D.; and Rosa Maria Diaz, Ph.D., all of Mayo Clinic; Fiona Errington, Ph.D.; John Chester, Ph.D.; Peter Selby, Ph.D.; and Alan Melcher, Ph.D., all of the Cancer Research UK Clinical Centre, St. James' University Hospital and Leeds Institute of Molecular Medicine, University of Leeds, UK; Heung Chong, Ph.D., of St George's Hospital Medical School, London; Hardev Pandha, Ph.D., of the University of Surrey, Guildford, UK; and Kevin Harrington, Ph.D., of the Institute for Cancer Research, London.

The National Institutes of Health, Cancer Research UK, The Richard M. Schulze Family Foundation, Mayo Clinic, and a private grant funded the study.

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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StevenK's picture
Replies 4
Last reply 6/30/2011 - 7:18pm

Today it feels like there's swelling in my nodes on my jaw/neck near my WLE scar. My onc declared them normal just on Tuesday. Can't it happen that fast? I'm freaking out. I'm touching that area constantly. Can't help it. Am I making this happen? I thought I'd gotten past the fear, but now it's back. What a mess I am. Please give me courage, God!

Steve   

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MariaH's picture
Replies 3
Last reply 6/30/2011 - 5:28pm

My husband Dave and I met with the thoracic surgeon today and scheduled a bronchoscopy for Friday.  The mass seen in Dave's CT scan is multiple matted lymph nodes (the largest measuring 3.7 cm in short axis).  We were told that it is not surgically resectable.  The biopsy will reveal whether it is the melanoma coming back or possibly a lymphoma.   Regardless of what it is, it looks as though since we can't cut it out, and systematic treatment is on the horizon.  My question, though, is if it IS melanoma, do we try IL-2 first and then switch to IPI if it doesn't work?  Or has IPI shown to wipe out melanoma (not just prolong survival)?

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wgalinat's picture
Replies 6
Last reply 6/30/2011 - 4:49pm

Hi all. It's Warren G. As some of you know I moved from South Florida this year to be around my sons new "girlie cuties" out here in Las Vegas. They are four ( on July 4th ) and two now. Time moves quickly when you are having fun. It's important to keep fun in your life though I understand it's difficult often to think about with what we all have been through, and heard, and seen up close and very personal.
After my NIH trial five years ago I have continued to grow and have cut off various carcinomas over the years. I am not sure why they love me so much. I wear a hat always now and lots of sun screen. I've read that they may be certainly tied to radiation exposure and lord knows I've had tons of that. Any who, I came down with Merkel cell recently. Heard of it ? Probably not. Super rare and most docs have never ever seen it in person. It's like melanoma in that it's a very fast moving cancer and of course dangerous. So it was on the top of my head and before I could get the surgery scheduled here in Vegas it did progress some. I was admitted into the hospital and had a large halo cut out deep and wide. Then they took a skin graft about four inches by three inches out of my right hip and put it on my head. The bad news is I think my dreams of a big time movie screen career are probably over , well at almost sixty years old now they never came anyway, the good news is it was all eliminated ( hopefully for good but we have all been down these roads before ). So life continues and we plow ahead. Try to have some fun, and I hope the best for everyone !!! DONT EVER GIVE UP !!! Warren G

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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laneyb's picture
Replies 4
Last reply 6/30/2011 - 2:56pm

I had a melanoma on the bottom of my toe in August 2010. In September, after two positive lymph nodes, I had a complete inguinal lymph node dissection - superficial and deep. I recovered well and went on with life and interferon (another story). Though I had some swelling and numbness in the thigh, I was doing well. Then, about 4.5 months after surgery, my leg really started swelling. Sensations at first, and then size increases. I finally got in to see a lymphedema specialist, who recommended we start with compression. I wore a 30-40 mmHG, thigh high garment for about 8 weeks and went back to the doctor complaining that it only worked on my lower leg. From the knee up, the swelling got worse.

So, now I'm scheduled to see an occupational therapist to do the complete decongestive therapy. I'm looking forward to the end of that, and hope it helps. But, in some ways, the therapists seems stumped by the swelling in the thigh. Graduated compression garments don't apply as much pressure above the knee where I need it, so I'm worried that all this time and money might be for naught in the end.

Does anyone have experience with such thigh swelling? Is there a better garment than just the thigh high compression hose?

Thanks so much for any information.

laneyb

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S o o z y Q's picture
Replies 2
Last reply 6/30/2011 - 11:32am
Replies by: MichaelFL, Janner

Hi!
My 11 year old daughter had a very strange irregular bordered lesion removed on her left lower eyelid yesterday. Bonnie posted a picture for me on the Facebook site affiliated with MRF. They feel it is "highly suspicious" for melanoma. I have family backeast who insist that she should have had a frozen specimen done yesterday to assess if it WAS melanoma, and then removal until clear margins right then?? From all I have read, if one presents with a specific lesion, they initially excise and send off to path??? What are your opinions on this?? Also, we are in Arizona--does anyone have any suggestions for drs who ate good with melanoma here. She is seeing Phoenix children's hospital physicians presently. Thank you in advance.
Susan

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NancyGM's picture
Replies 6
Last reply 6/30/2011 - 10:53am
Replies by: LynnLuc, Vermont_Donna, Anonymous, boot2aboot, djpayn

I just got word after having a hearing with a disability hearing officer, which was the first step in the appeal process. I was well prepared and presented phsical therapy records, medical records and  letters from doctor and  employer.  I had gone back to work part time at job where I earned under the limit of $900 per month. I recently left this job stating that I felt I still had residual effects ( i.e. fatigue and shoulder issues after lymph node disection) and because my immune system seems to be compromised as I constantly caught viruses from the young children I worked with.

My docto'rs letter stated my life could turn around at any time. The reviewing doctor's advisory opinion was that "fatigue post chemotherapy would limit claimant's physical function to lighter work". The work  I have always done, as a preschool teacher is described as light work in the Dictionary of Occupational Titles.

I even brought up a case precedent that was set in August of 2010 when a judge ruled in district court that cancer is a disability under the American's with Disabilities Act Amendment Act even if it is in remission [Hoffman vs. Carefirst of Fort Wayne, 2010 U.S. District Lexis 90879, 8/31/2010 no. 1: 09-CV-251 ]. She did not comment on this.

Next step is to wait up to 9 months for my hearing with an administative judge. I will be able to keep medicare and SSDI because I filled out a form- which one must ask for-to continue benefits. I need to find an attorney who is willing to take on this case probono since I would not be getting a lump sum should I win.

So, please be warned going back to work can be used against you when your disability is reviewed a the 3 years "free of neoplastic disease" mark. By that time one is considered medically improved under their guidelines.

NancyGM

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Replies by: MariaH, gabsound, Janner

Hi,

I updated my profile just 2 days ago and haven't gotten around to posting. I found the high dose phase to be not as bad as I was told it might be. Some nights w fever, chills and body aches, some nausea but for the most part felt just fine during the day. Some fatigue near the end which felt like I had lead weights on both my legs. I was quite worried about being able to work so arranged my schedule so I worked only 1/2 days. Knowing I only had to be there for 4 hours, no matter how I felt ,was psychologically good for me. My labs did change quite a bit with WBC and platelets dropping and liver enzymes up to > 6 x normal. Probably the most annoying symptom for me was the dry mouth. This was even worse if I had to take Compazine for nausea. I would wake up at night and could barely move my tongue. Needles to say, I was drinking lots of fluids.

My first subcut injection was a whole different story! I felt just awful within 4 hours of giving it and didn't recover for a full 24 hours-had to call in sick which is so hard on everyone when a full day of patients is already booked (I'm a sonographer, I do pregnancy ultrasounds). Another compounding factor was the Friday before I started my Interferon treatments 1/2 of the staff at Nevada Cancer Institue was terminated due to financial difficulties! That included my Melanoma Dr and his experienced nurse :( I went into this thinking I had an experienced team and had to deal with who was left. Luckily Dr. Samlowski and his nurse relocated to another Las Vegas Cancer Center. What a relief it was to find them!! But, that took 5 weeks. I didn't know what to do about self injections. Based on my symptoms Dr. Samlowski didn't think there was a lot to be gained for making myself miserable for the next 11 months. So I stopped. Hopefully that month will protect me!

So, not being on the medicine now for about 2-3 weeks I feel great. Went back to working full schedule. Got 2 biopsies done 1 week ago. Got a voice message from my PA to call her (the only other time she did that was to tell me about melanoma). One area was just fibrosis, but the second had a melanoma in situ. Good news, is the in situ part. She will do a wider excision in the next 2 weeks.

Now I'm wondering If I have that familial mole syndrome. I have lots of moles, freckles and of course sun damage from numerous sunburns growing up in sunny Las Vegas. I've probably had a dozen atypical moles removed before the melanoma as well as a basal cell cancer on upper back. Now I'm going to worry about my daughter who is 15. I scheduled an appointment for her and my husband for a skin check last time I went to Dermatology office,

The area that was the melanoma in situ was on the same leg as my melanoma and I showed that to numerous people-2 oncologists, the PA dermatologist, and the surgeon before I had my surgery in February. Again, no one was really impressed. The scary thing is I could point out many more moles that don't look that dissimilar to the one with the in situ! What to do about that? I did have my husband take pictures a couple months ago. I saw on Janner's page a link to some software to help you compare. Has anybody used it?

I have been following everyone's posts. Hang in there to those with current struggles and YEAH!!! to some good news!! I just love you all! Thanks for the words of encouragement, sharing your stories, the prayers and the knowledge! Just knowing you are all here is a real comfort!

 

Julie in Las Vegas

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TracyLee's picture
Replies 12
Last reply 6/30/2011 - 12:47am

Hi Y'all,

About 1.5 weeks since my second ipi transfusion.

I'm suddenly seeing painful, swollen nodes on the "good" side.

Anyone else experienced anything similar? I have been trying to cheerlead myself that it is just ipi doing it's slash/kill of cancer cells, but I'm a bit down right this minute.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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awg's picture
Replies 4
Last reply 6/30/2011 - 12:40am

Hello,

 

I will be seeing my Onc on 7/1/11 to discuss treatment options for my stage III mel. 

I know interferon will be discussed, peg vs high dose.

 

What are some key questions I should ask of my onc with regards to treatment options?

 

 

Thank you,

 

Allen

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Some are from Asco 2011...it's not a fancy website, but it's mine!

 

 

http://www.gentlewinds.org/index_files/Page2761.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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The National Cancer Institute at the NIH just told me my wife is ineligible for any trial there. Ever. Their reason was not that there was evidence of active brain mets, or that we had to wait three months from the last brain met treatment. It was that my wife's brain tumors bled (requiring the craniotomy and Cyberknife) and she suffered a seizure as a result of the brain irritation from the Cyberknife. "The seizures make her ineligible".

I think we all know how terrible it is to have this disease and it's metastatic. It's worse if you have brain mets because you are excluded from any clinical trials that I can find, unless you are BRAF positive (which my wife is not). So the hope is that your brain is at least free of disease for long enough after a particular brain met treatment that you can slide into a clinical trial - like the adaptive cell therapy and andeslukin combo. 

If anyone knows of any clinical trial that does not have brain met exclusions or this new "no seizure clause" I'd love to know about it. 

And for anyone getting Cyberknife or any other form of brain radiation, be sure to get on sufficient anti-seizure meds (not just steroids) prior to and well after the treatment. Because then at least if you are clear for a period of time you at least have a shot at an NCI clinical trial.

We are of course devastated by this news.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Replies by: LynnLuc, Anonymous

 

https://www.box.net/shared/ytd9uv9f7rvg3ndiivz9

Please if you get a chance, listen to the full interview of Dr. John Kirkwood on the lastest therapies for Melanoma. It might help save your life or loveone's life.

Get a cup of coffee and a pad and pencil.

Enjoy

Jimmy B

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Carol Taylor's picture
Replies 6
Last reply 6/29/2011 - 6:01pm

This amazing couple has made another, at Eric's insistence. Jill has her hands full so I hope she doesn't mind if I post this for her here. I know these are meant to be shared and are on youtube.

http://www.youtube.com/user/EricNJill?feature=mhee

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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