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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Judy D's picture
Replies 15
Last reply 10/15/2013 - 1:46am

I have been on Tafinlar for4 1/2 days. Experiencing headaches and severe pain on bottoms of my feet. I do have neuropathy but this feels different. Has anyone else experienced anything like this? If so what helped? Thanks for all the previous help.

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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HelenQLD's picture
Replies 2
Last reply 10/15/2013 - 1:04am
Replies by: HelenQLD, BrianP

My mum has recently been diagnosed with stage iv with mets of over 100 in her liver, lungs, spleen, ets and hip bones. She has rheumatoid arthritis and been told no immunotherapy and if she doesn't test braf positive then her options of treatment are drastically reduced. Anyone else suffering from RA and stage iv.

We are in Australia.

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Hello everyone,

Although very sad to hear the news about Dian from Spokane, I just want to share some good ones, knowing how the good stories of other people have been important to me at crisis points (bad scans) of this long journey : 

I am on Zelboraf since March 2012, at half dose since May 2012. This is my 7th line of  treatment. Zel worked well but  I had surgery in May 2013 to remove three resisting mel nodules hidden in tummy fat. NED afterwards.

PET-scan and brain MRI last week :  totally NED.

Even though, oncs won't allow to stop the medication. Apparently the risk of recurrence is still there.
Zel side effects go on, but are bearable choice, I guess!

Beatrice, stage IV diagnosed Feb 2009.


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nancyg's picture
Replies 2
Last reply 10/14/2013 - 8:09pm
Replies by: nancyg, Zan

My husband just finished his 2nd ipi infusion... Absolutely zero side effects.... Just very minor upset
stomach, but has had stomach issues for years...just so worried ipi is not working... I read some where that
A good indicator might be absolute lymphocyte count like if it increases to 1000 after 2nd dose ...have copies of his blood work and I do see lymphocytes 4.0. And then another one on the same sheet lymphocyte% 48
Does anyone know what that means?? Is Absolute Lymphocyte count a different thing?? There is no ALC
Listed on the results??? I will ask when we go next time... But would appreciate any input from all of you .
Thank you!

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As many of you know, caregiving is not an easy task. Join the MRF and the MRF's CURE Ocular Melanoma initiative for the second webinar in the Psychosocial Series: Caring For The Caregiver.  The webinar takes place this Wednesday, October 16 from 4-5 PM eastern. Registration is FREE and required. Click here to register.

Thank you to presenters Gregory Garber MSW, LCSW, CCM and Bonnie Crouthamel MSS, LSW, from Thomas Jefferson University Hospitals Cancer Center. 

Hope you can join this informative (and free!) webinar.

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Maxximom's picture
Replies 20
Last reply 10/14/2013 - 12:44am

I just found out that I am BRAF negative..I am very upset. I started IPPI on Monday. I need to have a Plan B in case the Ippi fails. I am one of those people that just seeem to take the one day at a time approach to life.. even though I know that I should. What options are out there for me..clinical trials..or are there treatments.. I doubt that I would be able to withstand the IL2 treatment..for many reasons.Any advise would be appreciated.


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Mat's picture
Replies 14
Last reply 10/13/2013 - 11:39pm

Hi Everyone,

Following a Stage IV diagnosis in July, and in light of a heavy tumor burden (particularly in liver), I started on the GSK combo at the beginning of August.  Within several days I felt great and, within a few weeks, my labs were normal.  For example, at one point in July my LDH was 600--now it is around 150.  Yesterday, I had my 8 week scans.  While I don't yet have copies of the reports, the rough stats are that my tumors have reduced in size in the range of 50% (liver) to 70% (abdomen)--and no "new" tumors.  Some small tumors (e.g., lung nodules) have even disappeared.  Also, a brain met that I had gamma-knifed in mid-August has disappeared (it had also shown reduction in size from the GSK combo previously).  Amazing drug combo when (and while) it works.

Separately, thanks again for all of your informative and insightful posts.  I've learned so much about treatment options (for later) from your posts.


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Anonymous's picture
Replies 0

Is there anyone out there with this disease from bcs? I would like to talk to someone from here please. Thank you.

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Anonymous's picture
Replies 12
Last reply 10/13/2013 - 1:32pm

Hi all,

I am writing on behalf of a friend.  Unfortunately she currently does not have a computer but she contacted me requesting that I try and help her find some information.  It is very hard for her to search as she only has access to the internet through her phone. 

I will try and obtain more information as you ask questions as I do not know much about melanoma and the exact details of her most recent tests.  Here is what I know:

In 2001 she had and was treated for Melanoma.  She has been disease free.  Recently she noticed inflammed lymph nodes.  She had a biopsy and the tests show melanin in her lymph nodes.  The doctor submitted a request for a PET scan but her insurance denied it.  She wants to fight the insurance but her doctor says it is useless to fight.  He wants to follow her every three months until they can find the tumor.  I told her to fire the doctor and find another one that will fight for her.  Her current doctor says her diagnoses is pending but will be either metastatic malignant melanoma without a primary source since it could have come from her malignant melanoma in 2001 or it could be from another current undetected malignant melanoma. 

She is a fighter and won't give up and definately does not want to give this disease a three month head start.  I am hoping that someone can give advice on how to fight the insurance company on the PET scan and then also the best doctor to go to in the Southern California area.  Any help, adivce or just even supportive words is greatly appreciated.  This friend is very dear to me and helped me through some of the toughest times of my life.  I want to repay her and I can't imagine life without her here. 




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Anonymous's picture
Replies 1
Last reply 10/12/2013 - 11:23pm
Replies by: JerryfromFauq
News October 01, 2013

Spare the Hippocampus, Preserve the Memory in Whole Brain Irradiation

IMNG Medical Media, 2013 Oct 01, N Osterweil

Dr. Vinai Gondi

ATLANTA (IMNG) – Sparing the hippocampus during whole brain irradiation can pay off in memory preservation for months to come, according to Dr. Vinai Gondi.

Adults with brain metastases who underwent whole brain radiation therapy (WBRT) with a conformal technique designed to minimize radiation dose to the hippocampus had a significantly smaller mean decline in verbal memory 4 months after treatment than did historical controls, reported Dr. Gondi, codirector of the Cadence Health Brain Tumor Center in Chicago and a coprincipal investigator in the Radiation Therapy Oncology Group Trial 0933.

“These phase II results are promising, and highlight the importance of the hippocampus as a radiosensitive structure central to memory toxicity,” Dr. Gondi said in a briefing prior to his presentation in a plenary session of the American Society for Radiation Oncology.

The hippocampus has been shown to play host to neural stem cells that are constantly differentiating into new neurons throughout adult life, a process important for maintaining memory function, he noted.

Previous studies have shown that cranial irradiation with WBRT is associated with a 4- to 6-month decline in memory function, as measured by the Hopkins Verbal Learning Test (HVLT) total recall and delayed recall items.

By using intensity modulated radiation therapy (IMRT) to shape the beam and largely spare the pocket of neural stem cells in the dentate gyrus portion of the hippocampus, the investigators hoped to avoid the decrements in memory function seen with earlier, less discriminating WBRT techniques, he said.

They enrolled 113 adults with brain metastases from various primary malignancies and assigned them to receive hippocampal-avoiding WBRT of 30 Gy delivered in 10 fractions. Radiation oncologists participating in the trial were trained in the technique, which involves careful identification of hippocampal landmarks and titration of the dose to minimize exposure of the hippocampus in general, and the dentate gyrus in particular. Under the protocol, the total radiation dose to the entire volume of the hippocampus can be no more than 10 Gy, and no single point in the hippocampus can receive more than 17 Gy.

Controls were patients in an earlier phase III clinical trial who underwent WBRT without hippocampal avoidance.

At 4 months, 100 patients treated with the hippocampal-sparing technique who were available for analysis had a 7% decline in the primary endpoint – delayed recall scores from baseline – compared with 30% for historical controls (P = .0003).

Among the 29 patients for whom 6-month data were available, the mean relative decline from baseline in delayed recall was 2% and in immediate recall was 0.7%. In contrast, there was a 3% increase in total recall scores.

The risk of metastasis to the hippocampus was 4.5% during follow-up, Dr. Gondi said.

The Radiation Oncology Therapy Group is currently developing a phase III trial of prophylactic cranial radiation with or without hippocampal avoidance for patients with small cell lung cancer.

The study demonstrates the value of improving and incorporating into practice newer radiation delivery technologies such as IMRT, said Dr. Bruce G. Haffty, a radiation oncologist at the Cancer Institute of New Jersey in New Brunswick, and ASTRO president-elect.

“It’s nice to have that technology available, and it’s now nice to see that we can use that technology to [reduce] memory loss and improve quality of life for our patients undergoing whole brain radiation therapy,” he said.

Dr. Haffty moderated the briefing, but was not involved in the study.

RTOG 0993 was supported by the National Cancer Institute. Dr. Gondi and Dr. Haffty reported having no relevant financial conflicts. 

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VICE WBRT and SRS  -  In some cases:

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

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SBeattie's picture
Replies 2
Last reply 10/12/2013 - 4:43pm
Replies by: frankMill, BrianP

sorry I don't have porfile yet...9/2011...stage 2a scalp..WLE. negative SNB...neg scane...2/2012 local recurrence, WLE, again, neg. SNB (drained to other side)...6 weeks radiation...scans neg until 8/ 2.2 cm spot lithgts up upper right lung...nothing else, no nodes...(in the scheme of things, I know I was//am fortunate)...had successful VATS...brain MRI was neg at the time.; LDH slightly elevated.  Very reputable mel specialist essentially said there isn't any sanctioned (i.e. insurance won't cover adjuvant therapy with say, ipi)...therapy...he also told me (which I already knew!) there was 80 - 90% chance it'll show up again...he also said I was in a small minority with this scenario...even tho I've read of many who have one met show up...resected...NED until the next time!   so, in this situation, one has to wait for it to show up again before treatment offered? he is going to be heading up two ipi-pd-1 trials that's there, and perhaps if/when it shows up (surely those cells are searching for a comfy place to raise a family...) the pd-1 drugs will be approved...but geez...meanwhile, scans every 2 months...however, I thought I'd read where there were trials with ipi for stage IV NED...but, if so, and I got into one, then I wouldn't qualifyy for ipi-pd--1 trail without a long wash-out period...just wanted to know if I've got my facts right...if indeed I have to watch and light of all the warriors whose descriptions I read (2-3 times per day on this site) I don't for a second discount the relative 'best' of the worst places I could be at this all are beyond inspirational and helpful...thanks for any feedback...



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Anonymous's picture
Replies 7
Last reply 10/12/2013 - 6:04am
Replies by: rock, Anonymous, DeniseK, ecc26, POW

Hello everyone,

This is my first post but I have been reading this bulletin board almost daily.  All of your stories and words of encourgaement have been getting me through this toughest time in my life, so thank you. 

My mom has stage IV melanoma.  She was diagnosed in April 2013.  The doctors told us that she had tumors in her lymph nodes, adrenal gland and spleen.  It took a long time for them to get results back that would show whether or not she had the mutated BRAF gene (turns out that she didn't), so there was a long gap between her being diagnosed to her starting any kind of treatment.  While she was waiting, she started spotting.  She's 60 years old so it was unusual.  She went to her gyno and was told that she also had vaginal cancer (melanoma that spread).  Her gyno said that it was very possible to have missed this in a CT scan.  Doesn't this seem odd that world renowned Dr.'s and hospitals would miss this?? 

So, we received this news and still hopeful, she started her yervoy infusions.  She has not had many side effects to the Yervoy except fatigue.  She seemed well until recently.  About 3 weeks ago, she started acting "off" (calling people the wrong names and just more confused-highly unlike her).  Turns out, she had a small brain tumor that would be easy to remove.  The surgeon took it out and claimed that he got the whole thing.  Next, it was time to decide between Gamma Knife and Cyber Knife.  Her consultation was about 2 weeks after her surgery.  She went in for the consultation and they did an MRI to find that there is another tumor that is twice the size of the 1st one. 

I'm trying to stay positive but my family feels certain that this is a sign that things are on the decline and that her cancer is highly aggresive.  She has started whole brain radiation last Thursday (5 days per week for 3 weeks) and had another on Friday.  Friday night and all day Saturday, she was in tremendous pain.  She was holding her side, vomiting and complaining of sharp pain in her ab and back.  I fear that this a result of her adrenal gland tumor.  On Sunday, the pain subsided a bit and today she's status quo.  When the pain increases and you feel it a lot more than usual, does this typically mean that the tumor has grown???

The Dr. is telling us that there's no point in doing a CT scan until 3 weeks after her last Yervoy treatment but I fear that she's dying before me.  Not knowing is the hardest part for us.  If anyone has endured a similar experience and is willing to share, I would greatly appreciate it. 

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Mazz's picture
Replies 6
Last reply 10/11/2013 - 1:21am
Replies by: Mazz, kylez, Mat, POW



Hello a close relative who has been Ned on zelboraf for almost a year just got diagnosed with 2 brain mets , one bleeding . The brain mets can be removed by opration and further treatment will be given . We do not know what treatment will be offered.

Any feedback what treatment works best on brain is highly appreciated. More over  I would like to know if the Braf / mek combo helps to avoid reoccurance of brain mets.


Thanks a lot


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