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.

Expand/ Collapse Topic
 
Replies By
View Topic
POW's picture
Replies 7
Last reply 12/12/2012 - 5:25pm
Replies by: madeclaire, POW, awillett1991, jeffjohn78, Anonymous

My brother's melanoma recently started to become resistant to Zelboraf so I am looking into clinical trials on his behalf. I have found a number of sites similar to clinicaltrials.gov that present a summary of the trial-- which drug(s), length of time of study, inclusion/exclusion criteria, etc.

What I can't find is the details about exactly what the treatment regimen will be. Are these oral medications or injectable? Will the patients be hospitalized or not? If hospitalized, will the protocol be 1 day or 5 days and then home for 3 weeks? Will they have to come in for blood tests or scans every week or every month or what?

Transportation, mental confusion, and the "hassle factor" will be very important to my brother when choosing a trial. Does anyone know where I can find such details?

Login or register to post replies.

A couple articles that give hope for a cure.  The first article doesn't specifically mention mel but seems to have some real promise. 

 

http://www.foxnews.com/health/2012/12/10/girl-puzzling-diagnosis-helps-eradicate-cancer/?test=latestnews 

 

http://oregon.providence.org/patients/programs/providence-cancer-center/Documents/sbrt-ipressrelease-060512.pdf 

Login or register to post replies.

awillett1991's picture
Replies 6
Last reply 12/14/2012 - 10:43am
Replies by: Tina D, awillett1991, POW

Lots of talk on here about whether to stop Zel and for what. Here is my experience so far - not easy - however I don't regret my choice.

April 2012. BRAF V600D. Started Zelboraf with know cardiac met & 4mm brain met.

Sept 2012 - brain is ALL CLEAR and cardiac met is down to 7x11 mm - undetectable on PET. Chest/abd CT all clear. Stopped Zel 9/28 while still responding in order to do Ipi.

10/1/12, 10/22/12 - 1st & 2nd infusion of Yervoy aka Ipi. Diagnosed w Iritis.

10/29/12 - headaches lead to head MRI to check pituitary. Instead, diagnosed with 2 brain mets - old one, supposedly resolved by Zel, is back and now 6mm, new one 4mm. Diagnosed with hyperthyroid nodules from Ipi.

11/8/12 - SRS for 2 brain mets

11/12/12 - Ipi dose 3

11/14/12 - cardiac met rapid growth confirmed. Dr is shocked. Now 42mm x 42mm x 21mm in Rt Aorta. Restarted Zelboraf 720 mg twice daily, then stopped for 1 wk. Side lined by fever/chills and liver levels going up.

12/3/12 - last Ipi infusion, #4

12/5/12 - restarted Zel

12/6/12 - Confirmed still responding to Zel. Cardiac met shrunk slightly after only 15 days on therapy. Ipi response TBD however bilirubin, AST, and ALT up and down. ALP 6 times normal, next up is to confirm whether drug or tumor related and full scans i guess.

Plan to continue Zel at 720 mg/ day however dr is recommending 1 wk on/1 wk off due to my continued problems w toxicity. Ipi caused increased lymphadema in my leg/groin where I had total LND 2 1/2 yrs ago and fatigue is really bad. Low hemoglobin -> blood transfusion. No GI or skin issues yet :)

Heard today IPI+Zel trials not going well due to liver toxicity issues.

Login or register to post replies.

meeshka6059's picture
Replies 8
Last reply 12/14/2012 - 11:23am
Replies by: meeshka6059, SidneyGracie, lhaley, Anonymous

My father is 82 years old and was diagnosed with Stage 4 melanoma about a month and a half ago. He has tumors in his brain, liver, kidneys, adrenals, lymphs, and elsewhere. He woke up one morning and couldn't move his left arm and was diagnosed at that time. He had full brain radiation for 10 days and has been on Zelboraf for about a week and a half now. His side effects are debilitating exhaustion, lack of appetite, and skin rash. Doc is taking him off for him to "detox" and may put him back on a lower dose. Fortunately he has no pain or nausea. I'm so glad to have found this website. Thank you for being here. Sending love to you all. ~m

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 12/11/2012 - 2:24pm
Replies by: Richard_K, Tina D

I travel a great distance by car to see my onc & to get treatment.

I have been very lucky to get maximum per $300 annuallly reimbursement for mileage from the American Cancer Society. Unfortunately, the $300.only covers approximately 6 months & then I max out at $300.

The Amercian Cancer Society only allow $300. per person per year.

Does anyone know of any other agency that covers car mileage for Cancer patients.

Thanks,

Nell

Login or register to post replies.

Sherron's picture
Replies 1
Last reply 12/11/2012 - 12:28pm
Replies by: Sherron

My name is Sherron....my e-mail in Noni2@verizon.net    If you need to talk I am here.......

 

Take Care,

Sherron, wife to Jim FOREVER

Login or register to post replies.

POW's picture
Replies 10
Last reply 8/7/2013 - 5:47pm

I just found out about two clinical trials for Novartis' new BRAF inhibitor LGX818.  LGX818 is a lot like Zelboraf but it binds tighter to the BRAF protein so it might be harder for the tumor to develop resistance. You still have to have the BRAF V600E mutation, though.

Novartis is sponsoring 2 clinical trials-- one of LGX818 alone ( http://clinicaltrials.gov/show/NCT01436656 ) and one of LGX818 + the MEK inhibitor MEK162 ( http://clinicaltrials.gov/show/NCT01543698 ). The number of sites is still small, but new sites will be recuriting soon (including Moffitt).

The best news is that according to Dr. Gibney at Moffitt, LGX818 has been shown to have activity in patients who became resistant to Zelboraf AND  having a history of Zelboraf does not exclude you from this trial!

Login or register to post replies.

Stage III, Unknown Primary; 1 positive node in left axilla

Login or register to post replies.

Snickers60's picture
Replies 2
Last reply 12/10/2012 - 5:55pm
Replies by: triciad, Anonymous

Benfotiamine is a water soluble form of Thiamine = B-1.    It is essential in healing NERVES.   As most of you know Wayne has had unbearable neuropathy in his legs and feet with crying shooting pains at night espeically.    I actually bought this for myself for ENERGY.    Then we really read up on it and saw how much it has helped people with diabetic and chemo neuropahty.  

Wayne started taking it immediately.  He had just gotten his Neurotin script filled he got at MDA last week, but decided to give Benfotiamine a go first.     In 2 DAYS he had little,  if any SHOOTING PAINS and slept thorugh the night wth no waking in that  awful pain.   It has also changed my life in 3 days with ENERGY  - something I had NONE OF.   My pain and his is so much better.     This is in only 3 days !    

DO YOUR OWN RESEARCH ABOUT IT, and talk to your DOC, but by all means, and by all ways, take a look at this supplement they are using for a long list of very hard to treat ailments, but espeically Neuropahty, FATIGUE, Pain....and many other things.. 

We have been amazed, and have ordered 2 more bottles.   I'm sooooo excited that  it looks like Wayne will NOT have to be taking NEUROTIN - a very nasty drug with so many side effects.     GIRLS, it has also CURBED my cravings and is working on my balancing my blood sugar.  

It must be BENFOTIAMINE because the regular B-1 is not water soluble and we cannot get enough in our system.  

I HEARD ABOUT IT ON Dr. OZ  :-)  - and as a FLUKE and DESPERATE for HELP, bought some immediately.   We have been amazed.  Maybe this will help someone else too.   We are early on in this trial, but so far = FANTASTIC RESULTS !       

Nancy (devoted wife of 3 X Warrior Wayne)     BLESSING AND HEALTH TO ALL !

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

Login or register to post replies.

Richard_K's picture
Replies 12
Last reply 12/14/2012 - 11:50am

 

Well, after a worrying six weeks, I have my eyes fixed on crossing the “3 year on Zelboraf” hurdle (March 3, 2013).  After the hiccups caused by hurricane Sandy, I had my blood tested locally and with my bilirubin back in line, I was placed on 720 mg 2x per day starting on November 7th.  I had clean scans on December 3rd, continued good blood work on December 5th, and I am continuing on Zelboraf at 720 mg 2x per day and into my 34th month on Zelboraf.  No more scans or tests until next year.

On another matter, I had a PSA last week and my urologist does not think I need another prostate biopsy for six months; it is a very slow cancer.

Dick

Login or register to post replies.

triciad's picture
Replies 9
Last reply 12/11/2012 - 4:28pm

I was wondering if anyone has heard from LynnLuc.  I believe she was in an AntiPD1 trial at Moffitt and had great success.  I've seen several posts with questions about his new treatment.  I know it't the holidays, but perhaps she will weigh in.  Sending prayers Lynn that you are having continued success.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 12/12/2012 - 4:15pm
Replies by: mcanova, PSD

This might sound like a crazy question, but I had 2 nodes removed after they did the lymphangioscintography with radionuclide injections surrounding the melanoma excision site.  In the pathology report they describe the nodes as "yellow-tan, pink-tan" lymph nodes.  Wouldn't the nodes they removed, if they removed the right ones, be blue in color (from the radionuclide)? 

Login or register to post replies.

Caretaker's picture
Replies 15
Last reply 12/12/2012 - 12:15am

Hello,
I wrote at the end of October when my beloved, three months on Zelboraf, started exhibiting Alzheimer type symptoms. Everything spiraled out of control thereafter, until he literally lost his mind and died a violent death on Nov. 17. As my sweetheart patiently waited for Zelboraf to work, it stopped what little it was doing. He had 10 new brain lesions and the melanoma was in his spinal fluid. I actually lost him weeks before his death, as he was hallucinating, needed a "sitter" while in the hospital, and couldn't talk or meaningfully communicate. Two grand mal seizures landed him another hospital stay, during which he lost all faculties, including the ability to swallow.
At this point, there was nothing left except to take him home and watch him starve and dehydrate to death for six days. He had another seizure four hours prior to death, at which point green bile constantly oozed out of his mouth. Immediately following his last breath, black liquid came out, causing the hospice nurse, a great-grandmother, to declare, "Oh my God, I've never seen anything like this."
In the end, Zelboraf gave him a decent 5-6 days, if you don't factor in fatigue. It stopped working within three months and, as others have noted, the cancer ate him up with a vengeance thereafter. The fellow who wrote that his oncologist told him Z is an end of the road drug & wouldn't let him take it should go kiss his oncologist's feet and praise that person's honesty.
I write to beg you to PLEASE PLEASE PLEASE do your research. Question your oncologist; hold his/her feet to the fire. We had absolutely no idea the end would come some quickly and horribly with all options immediately gone, including the ability to say goodbye.
I miss him terribly. He won't see his 60th birthday. We won't grow old together. PLEASE don't let this happen to your loved one/s.
Caretaker

Login or register to post replies.

KMT2003's picture
Replies 6
Last reply 12/11/2012 - 1:02pm

I haven't posted in awhile but I hope everyone is having a good holiday season! I have been taking "Z" now since Oct. 18 and in the beginning the side effects were very minimal. However, now I think the side effects are showing up more...rash, red bumps on skin with a few new freckles/moles that I am watching, very sore feet (soles), sore joints and knuckles on fingers are swollen (can't take rings off), tired more and low grade fever/chills at night only (99-100). On a few of the red bumps on my legs I can feel a small pea size bump just under the skin. Are all these side effects normal and how long do they normally last? I was hoping they would fade away after awhile. I really don't want to have to cut my rings off so I am waiting to see if it goes down. Any ideas, suggestions or input on your experience with Z will be helpful. Thanks!

Kelly
Stage lV
Fight the beast with all we got!

Login or register to post replies.

Jewel's picture
Replies 11
Last reply 12/9/2012 - 7:55pm
Replies by: POW, jim Breitfeller, Jewel

Hi Jim,

Since Nov 2010 I have been on this site daily just trying to learn all the things I can, I have to admit alot of your post are quite over

my head. The dedication that you have put into learning about this disease is amazing. My husband was diagnosed in 2010 with Stage 3

3.7 depth recurrance in leg 6 months later 3/19 nodes positive in LND. Clean scans since Sept 2011. He is Braf positive.

I of course hope that it never comes back again, but of course that is rather optimistic. With all the data you have researched what order of

treatment would you suggest? I know that is a pretty heavy question and I know everyones outcome is different but I think all of us take

great comfort in your knowledge and opinion.

 

Thank you,

 

Jewel

Login or register to post replies.

Pages