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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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

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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

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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

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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!

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

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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 !

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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

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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.

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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)? 

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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

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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!

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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

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lrkg1234's picture
Replies 3
Last reply 12/9/2012 - 10:38pm
Replies by: LynnLuc, Phil S

My husband Scott just did his first round of IL-2.  I have heard good things about the vaccine above and the trials that they did at MD Anderson with it.  Is it FDA approved?  How could you go about getting it with your IL-2 if you are not in a study?  Worth checking into since it has fairly significant results. 

Please let me know if anyone here knows anything about it. 

Thanks, Lisa

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Nell's picture
Replies 13
Last reply 12/10/2012 - 12:55pm

Anybody have information on how often stage IIIC travels to the organs?  I have just had a resection of the right axilla..all lymph nodes and surrounding tissue removed...Path report was 4 infected nodes..2 we knew about before we went in as they lit up on the PET/CT  scan...the other 2 were surprises as there was no sign of them on the scan.  Surrounding tissue was clear.  Just trying to get a handle on this..There is not much offered for stage III.  Hard to know what to do.

One voice can make a song; one life can change the world.

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POW's picture
Replies 10
Last reply 12/8/2012 - 11:32am

Oh, dear! Last week's scans show that my brother's melanoma is progressing on Zelboraf. One tumor in his lung increased from 3 cm to 4 cm since the last scans 2 months ago. Thankfully, no other tumors in his body or his brain are growing yet. He started Zelboraf at the end of July. He had an excellent response and very few side effects but--alas--he's becoming resistant.

His oncologist at the VA would support him going into an anti-PD-1 clinical trial at Moffitt but I don't see Moffitt listed as a site for the GSK Phase 3 trial. Does anyone  know if Moffitt is doing any anti-PD-1 clinical trials?

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