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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caratindell@comcast.net's picture
Replies 3
Last reply 3/23/2012 - 4:18am
Replies by: Anonymous, JerryfromFauq, Becky

Hi all! A friend has been diagnosed with oral cancer. This site has been invaluable as a place to learn, vent, and reach out to those with melanoma. Does anyone know of something like this site for oral cancer? I would appreciate any information that I can pass along. My direct email is:

caratindell@comcast.net

Thanks for your help!

Cara

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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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bikerwife's picture
Replies 1
Last reply 3/22/2012 - 6:54pm
Replies by: JerryfromFauq

We have made another milestone in our lifes. Our son was married Sunday Lynn was best man and overall looked really well. He was tired but other than that fine.
He says he feels really good. Some of the growths are scabbing over. How long does it take for them to disappear and how do u know if and when the ippi starts working. Doctor says process takes awhile guess I'm antsy.

What God leads u to he will. Lead you through

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http://the-scientist.com/2012/03/20/prometheus-patents-overturned/

 

Personalized medicine just got a little harder to patent. Today (March 20), the United States Supreme Court decided that two diagnostic methods developed by Prometheus Laboratories to calibrate drug dosages did not meet the standards for patent eligibility, reported Reuters.

Synthetic thiopurines are administered to treat certain auto-immune diseases, such as Crohn’s disease, but patients must be monitored to optimize dosing while minimizing side effects. Prometheus’s methods rely on monitoring the levels of various metabolites in red blood cells. In 2004, the Mayo Clinic devised its own diagnostic tests based on different levels of these metabolites. Prometheus Laboratories sued in District Court, alleging patent infringement, and Mayo claimed in return that Prometheus’s tests relied on unpatentable natural phenomena. The Federal District Court upheld Prometheus’s patents, because the methods added treatment steps and used the natural correlation between metabolite concentration and toxicity in a specific application, reported Genetic Engineering & Biotechnology News.

But the US Supreme Court disagreed with this assessment and overturned the Federal District Court’s ruling.

“To transform an unpatentable law of nature into a patent­ eligible application of such a law, a patent must do more than simply state the law of nature while adding the words ‘apply it,’” the Supreme Court’s opinion, written by Justice Stephen Breyer, asserted. “We conclude that the patent claims at issue here effectively claim the underlying laws of nature themselves. The claims are consequently invalid.”

Lisa Haile, a patent attorney and co-chair of the Global Life Sciences Sector at the firm DLA Piper, predicted that the US Supreme Court would overturn Prometheus’s patents, but suggests that the addition of more “active” steps could render the methods eligible for patenting. Examples of “active” steps, Haile explained to The Scientist in an email, include comparing a patient’s 6-thioguanine concentration to a reference level and determining whether it falls within the therapeutic range.

Prometheus’s patents aren’t the only ones under scrutiny. Several other cases will be decided soon, including Myriad Genetics’ patents on the BRCA1 and BRCA2 genes. The court’s ruling will help determine how patents will be applied to personalized medicine, Courtenay C. Brinckerhoff, vice-chair of the Chemical, Biotechnology & Pharmaceutical Practice at law firm Foley & Lardner LLP, wrote in a recent opinion piece for The Scientist. Whether patents stifle development of new therapeutics, encourage innovation, help or hurt patients, is still unclear, said Brinckerhoff, and the Supreme Court may be approaching these questions on a case-by-case basis.

I'm me, not a statistic. Praying to not be one for years yet.

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gabsound's picture
Replies 1
Last reply 3/22/2012 - 2:41pm
Replies by: bikerwife

I recently came across a book that I feel has changed my thinking about cancer and given me AN ENORMOUS AMOUNT OF HOPE.

It's called "DYING TO BE ME" by Anita Moorjani

I thought this may help someone else-I read the book cover to cover in 4 hours and plan to read it again soon!

Peace and love to all,

Julie in Las Vegas

Here is a blurb off the Amazon.com site:

Book Description

Publication Date: March 1, 2012

 

     In this truly inspirational memoir, Anita Moorjani relates how, after fighting cancer for almost four years, her body—overwhelmed by the malignant cells spreading throughout her system—began shutting down. As her organs failed, she entered into an extraordinary near-death experience where she realized her inherent worth . . . and the actual cause of her disease. Upon regaining consciousness, Anita found that her condition had improved so rapidly that she was able to be released from the hospital within weeks . . . without a trace of cancer in her body!

     Within these pages, Anita recounts stories of her childhood in Hong Kong, her challenge to establish her career and find true love, as well as how she eventually ended up in that hospital bed where she defied all medical knowledge.

     As part of a traditional Hindu family residing in a largely Chinese and British society, she had been pushed and pulled by cultural and religious customs since she had been a little girl. After years of struggling to forge her own path while trying to meet everyone else’s expectations, she had the realization, as a result of her epiphany on the other side, that she had the power to heal herself . . . and that there are miracles in the Universe that she had never even imagined. 

     In Dying to Be Me, Anita freely shares all she has learned about illness, healing, fear, “being love,” and the true magnificence of each and every human being!

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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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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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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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