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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Anonymous's picture
Replies 1
Last reply 3/18/2015 - 11:07am
Replies by: CHD

http://www.clairemariefoundation.org/

 

The Claire Marie Foundation was established in 2014 following the death of Claire Marie Wagonhurst, a sparkling 17 year old who lost a long battle with adolescent melanoma as a result of changes her body went through during puberty.

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Lesanne's picture
Replies 4
Last reply 3/18/2015 - 1:10am

My husband started with the Tramitinib and Debrafenib combo trial a month ago.  I noticed there are quite severe side effects.  He was on the treatment for a month and was running a very high temperature and getting chills all day yesterday.  I would like to know from other patients using this combo, whether running such high temperatures  and chills carry on or is it not so frequent?  He lectures and had to miss 2 of his classes as a result.  I have done quite a lot of research on this combo - and am concerned that this could be an ongoing experience for him which could affect his lecturing.  Your comments will be appreciated!

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BrianP's picture
Replies 0

Curcumin is often a topic of conversation on here so I thought some might find this article interesting  

 

http://medicalxpress.com/news/2015-03-curcumin-effective-combating-cance...

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jag's picture
Replies 16
Last reply 3/17/2015 - 9:48pm
Replies by: jag, JoshF, Manfred, Anonymous, Kim K, yazziemac, kpcollins31, Brendan, Bubbles

After my 4th craniotomy, my neurosurgeon came in to tell my family that he had removed what would be the last melanoma metastases in my brain.  Up to that point, I had had 2 lung surgeries, 1 Video assisted Thorascopy followed by 6 rounds of biochemotherapy, followed by 4 rounds of interleukin 2, followed by a complete left pneumonectomy.  I went on to have SRS radiation (still got the tattoo on my forehead for the laser alignment) followed by a craniotomy when that didn't work, and 4 subsequent cranitomies (2 were double craniotomies) that is when they cut 2 holes in your head.  In between there was focal patch radiation where they create a cast for your face and give you blasts of radiation, I never lost my hair during chemotherapy, the radiation did it, I got married as a fat bald guy to the woman of my dreams (my backbone through all of this and to this day).  

Anyway, enough about that nightmare, there were good times too, trips to most of the national parks, the islands in New England, my cousin's wedding in Ireland, and even working at nearly every borough except Staten Island in NYC as a relief veterinarian.  It has been quite a journey.

Two more brain surgeries later (to clean up radiation crud), a year of not being able to drive due to seizures and Dilantin toxicity, I am now back on my feet and maknig up for lost time.  I am finally tapering off of my seizure medication.  

I was there for the birth of my son Jedd via invitro fertilization.  He is named after my oncologist (and personal hero-who I am sure to this day is as dedicated to his research and cancer patients as he always has been as he has been since he started-Dr. Jedd Wolchok.  Scroll down to the bottom of this article (that was almost 2 years ago on his 

 http://www.fredhutch.org/en/news/quest/2013-12/revolutionizing-solid-tum...

My wife  and I started our own mobile veterinary practice (she is a vet too.)  check it out.  I personally designed the sprinter procedure vehicle which has digital radiography, anesthesia for elective dental and surgical procedures.  Check it out:

www.gsvmobile.com

Anyway, now we are in the process of tearing down our old shack (Meredith and I bought it because she would be able to carry the mortgage on a 600sqft house-if I karked it (as NicOz used to say)) and are installing a n new modular home 3 times it's original size (1800 sqft)  Jedd made me do it as did adopting an early reitrement seeing eye dog last year on my birthday who put us over the edge.  We are renting a house across the street and hope to watch the demolotion and construction of it.  

Meredith was diagnosed with a primary melanoma (barely stage I) and I realized how difficult in can be to think of a loved one being sick.  She was a champion thoughout my whole treatment and was strong for her's too.

Needless to say, having cancer definitely got me used to big changes, being busy, and dealing with stress.  On my worst days I can say "At least I don't have my own brain surgery scheduled for today".  

In the meantime, I'm sorry that I haven't been here to help encourage people and direct them for the best treatments as much as I used to.  The only thing I can say in my defense is that my treatments (other than brain surgery) are virtually non-existent any more and I have been just a little busy .  My treatment strategy was in this order. Say your prayers,  Minimize tumor burden, get throughthe most difficult treatments early on-save the easy ones for when you are really debilitated stay.  Immunotherapy and surgery were the best ones for me.  Stay active and keep moving (I try to get in 10000 steps on my pedometer/day) -say your prayers again, hold hands with your best friend, and look both ways when crossing the street.  

I'd also like to thank the current melanoma "experts" i.e. patients who are experiencing their own treatments and passing on everyday advice to others.  Another resource I always found useful was google alerts.  I had one set for metastatic melanoma and one for brain tumor treatments.  You can set one up for yourself here-you will find out about the "cutting edge" stuff before your doctor does!

https://www.google.com/alerts

Another one when I was scanning for trials is

www.clinical trials.gov.

I am writing this to offer a bit of encouragement for all of you fully engaged in your own personal cancer battle-know that my prayers are with you and to say that you are welcome to e-mail me if I can offer any support:  I'd also like to say thank you to all of the caregivers as you are the glue that holds a patient together.  Some of them (my wife especially)are like crazy glue, which is fine-it is stronger even if smelling it makes you a bit dizzy.

I never though life would be going this well for me.  I never thought it would be as bad as it was when I was going through treatment either.  Either way, I still think of god everyday.  I don't know why I have been lucky enough to be writing this right now.  Hope isn't a bad thing.

e-mail: gallagherjohna@yahoo.com

 

Insert Generic Inspirational Motto Here

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SarahW's picture
Replies 16
Last reply 3/17/2015 - 6:03pm

I saw a post earlier this week polling people with NED after treatment of stage IV melanoma. So I thought to ask how many of you out there have stable non-progression of Stage IV  on this drug combo. My husband has been on it since February with stable disease as of July's scans.

Prior to that he was treated with stereotactic brain radiation surgery x 8 brain tumors on two occasions, Vemurafenib alone, and Vemurafenib + XL888(pre-clinical trial drug) and dabrafenib alone.

His energy level and skin color have returned to his pre stage 4 level on the dabrafenib and Mekinist combo

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rick1981's picture
Replies 21
Last reply 3/17/2015 - 2:17pm

Hello,

my wife was diagnosed with stage IV in June and did exceptionally well on BRAF/MEK until late November (PET negative, partial response) and then developed resistance. New mets in her hip area (3) and later also in her brain (small but 12pcs). Pembro was started on 3/12 and she had whole brain radiation and hip radiation and she improved physically and so did her blood values. She did have multiple epileptic attacks since mid Jan but always received until last weekend.

She has severe speech issues now and a New MRI revealed several mets have grown significantly and that brain sections are shifting.

Too many large mets to operate, too soon after WBR for Gamma Knife. There is some inflammation so that could be a sign of the pembro.

that seems to be the only option left wait pray and see if the Pembro (#4 last week) can act quickly...

any other advice? Reality starts to set in its just so tough as we thought we had plans B and Cs...

rick 

 

 

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Replies by: mary1233

Temozolomide Plus Cisplatin as Systemic Adjuvant Therapy for Resected Mucosal Melanoma https://clincancerres.aacrjournals.org/content/19/16/4488.full

I know several people that have recently been started on the above treatmetn.  They have been being asked why they are being given these OLD drugs.  This article is the study that is the basis for this treatment for mucosal melanoma patients.  I have not seen it tied to specific Mutations, but learning what mutations have been involved in these trials will be very interesting.  (Suspect C-kit, NRAS and BRAF to be the 3 main over-expresions/mutations involve)

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

The endpoints were relapse-free survival (RFS), overall survival (OS), and toxicities.

Results: One hundred and eighty-nine patients were enrolled and finally analyzed. With a median follow-up of 26.8 months, the median RFS was 5.4, 9.4, and 20.8 months for group A, B, and C, respectively. Estimated median OS for group A, B, and C was 21.2, 40.4, and 48.7 months, respectively. Patients treated with temozolomide plus cisplatin showed significant improvements in RFS (P < 0.001) and OS (P < 0.01) than those treated with either HDI or surgery alone. Toxicities were generally mild to moderate.

Conclusion: Both temozolomide-based chemotherapy and HDI are effective and safe as adjuvant therapies for resected mucosal melanoma as compared with observation alone. However, HDI tends to be less effective than temozolomide-based chemotherapy for patients with resected mucosal melanoma in respect to RFS. The temozolomide plus cisplatin regimen might be a better choice for patients with resected mucosal melanoma. Clin Cancer Res; 19(16); 4488–98. ©2013 AACR.

 

Translational Relevance

Mucosal melanoma is rare and of extremely poor prognosis. However, standard adjuvant therapy for mucosal melanoma has not been established. The importance of our study is that we provide clinical data showing that high-dose IFN-α2b (HDI) and temozolomide plus cisplatin may be advised to patients with mucosal melanoma in stages II/III and after surgical removal of primary mucosal melanoma. The significance of the study is that temozolomide plus cisplatin regimen, likely better than HDI, may be a choice of adjuvant therapy for patients with mucosal melanoma in respect to relapse-free survival (RFS) and possibly overall survival (OS). Our study shows that both adjuvant regimens are safe and well tolerated for patients with resected mucosal melanoma. Even for patients harboring c-kit or BRAF mutations that are potential targets for targeted therapies, the temozolomide plus cisplatin regimen may be a better choice than HDI. Our trial is unique in that it addresses adjuvant therapy for a specific, uncommon subtype of melanoma.

 

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

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yazziemac's picture
Replies 2
Last reply 3/17/2015 - 8:23am

Hi all

Has anyone heard of using photodynamic therapy (PDT) to treat melanoma?  If so, what have you heard?  

Yasmin

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Brendan's picture
Replies 12
Last reply 3/16/2015 - 3:22pm

Hi everyone,

i just wanted to share some good news in the hopes that it will lift someone's spirits; as many have done for me in the past.

i just had all my scans yesterday and they looked good. Here's a quick summary:

Sept 2011-stage IV, lung met, thoracic surgery

Nov 2012-craniotomy #1

June 2013-craniotomy #2 (recurrence), gliadel wafers left in cavity

November 2013-two new mets, one in each lung

Jan 2014-begin nivolumab trial

Feb 2014-first scans on clinical trial are good, small met is gone, target met down 60%

March 2015-brain still clear, lung met stable after 95% shrinkage.

So I've been stage IV for 3 1/2 years and still going. Some SRS and ipi was mixed in there too, along with some seizures.  

I'm just happy to still be able to play with my girls and bother my wife!

Good luck to you all.

Brendan

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Your journey matters.

Journey DX, a patient research company, is working with patient advocacy group Canadian Skin Patient Alliance to better understand the patient journey for melanoma, as well as the impact of this disease.

We are conducting telephone focus groups for Canadians with advanced melanoma, and their caregivers. The focus groups will last approximately one hour, and will be conducted over the telephone to be comfortable and convenient for patients and caregivers who would like to share their experiences.

A compensation of $50 will be provided to those who participate, in appreciation of their time.

If you would like to be involved or would simply like more information, please contact Dr. Jennifer Pereira, Research Director of Journey DX (jennifer.pereira@journeydx.com, 416-485-7387).

Thank you for your consideration.

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StephyD83's picture
Replies 7
Last reply 3/15/2015 - 10:17pm
Replies by: Anonymous, StephyD83, Mat, JoshF

Hi all-
This past week out of the blue the right side of my chin and bottom lip keep going numb on and off. It is the strangest thing. I am concerned as my melanoma was on the right side of my face. I have looked it up and all I can find is Numb Chin Syndrome. Basically days is a sign that cancer has spread. Have any of you experienced this or know about this?
Thanks!
Stephanie

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Anonymous's picture
Replies 4
Last reply 3/15/2015 - 9:39pm
Replies by: Anonymous, jenny22

As a past user of this group (10 years stage 4 melanoma with Ipilimumab), I now need a good discussion group for prostate cancer in order to find the best urologist.

(I found my melanoma oncologist through this forum but cannot find such an active prostate cancer forum. There are few unfrequent users in the prostate cancer forum that I found. Can anyone recommend please)

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braunerk's picture
Replies 4
Last reply 3/14/2015 - 9:09pm

Has anyone had thier adrenals come back to life after failure from Yervoy. My endo says mine won't come back so I will be on steroids forever. 

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About 2008 my dad was diagnosed with Melanoma on his head and forehead. The doctor removed it and on both samples it showed clear margins. fast forward to December 4th 2014 my dad was playing poker which is a pretty routine thing since he retired. A lot of the people know him there and noticed that he was acting strange so they called for an ambulance. Thinking he may of had a stroke they did a CT and later an MRI, they found a total of 18 tumors in his brain. The largest ones are not operable because they are so close to the brain stem. They scanned his chest and abdomen and found a large tumor there 4cm x 5cm. It is likely that he has lymph node involvement also. They did a biopsy of the tumor in the lung and that came back BRAF Negative. Not sure really what that means. He has been on steroids for brain swelling, anti seizure meds, and ativan so he can sleep because those steroids were only allowing him to sleep for 3-4 hours. He has had about 10 whole brain radiations done, now we are going to start on immunology and I beleive Yervoy. Metting with the MD on Wednesday. What questions should I ask? I am a regisitered nurse, but my specialty has never been oncology, so I am lost. I am devestated and not ready to lose my dad, I love him so much. Any help is greatly appreciated!!! 

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/13/2015 - 5:23pm
Replies by: Fen, Anonymous, Bubbles

I am posting anonymously because my user name does not pass the MPIP spam filter.  My user name is a nickname for Richard followed by “_K” and oddly, there are times I can’t post anonymously even though I changed my user name.

Anyway, I recently passed my five year anniversary on Zelboraf.  Side effects limited to body rash, some foot discomfort, and photosensitivity.

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