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
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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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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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awillett1991's picture
Replies 15
Last reply 9/2/2014 - 12:21pm

I started dabrafenib about a month ago, then added the Mekinist 2 weeks ago. I was fine, only slight side effects, on the dab, but the MEK has reduced my quality of life to 0. Either fever or chills, cannot get out of bed, Aleve & Tylenol don't help. I am off it all for the weekend as my Dr is out of town.


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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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Anonymous's picture
Replies 5
Last reply 10/15/2013 - 3:18am

Hi was wondering if I should be concerned as my LDH level went from 139 to 174 in 6 months. I've heard this is a marker for metastasis. Can someone answer?

Let's work for better treatments....for a cure!!!!

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Jwfd808's picture
Replies 5
Last reply 10/19/2013 - 8:49pm

I just started Temodar this week after ipi which helped with my internal organs but I still have many new tumors on the surface of my skin. Which I hope with Temodar and the radiation that it slows this down while I wit to see about getting on a pD1 trial. 3 days and I'm feeling fine have not felt any side effects yet. But I had no side effects on IPI out side of some fatigue once in a while.

I live every day one at a time and thing are what they are

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mark74okc's picture
Replies 12
Last reply 10/22/2013 - 11:16am
Replies by: charlesthomas, kylez, DonnaK, jmmm, Anonymous, JoshF, mark74okc

My father was Diagnosed with Brain Melanoma a little over 6 weeks ago.  He has gone down hill drasticly. before he was diagnosed he was walking a mile a day and reading complicated ancient greek books and philosophy.  He is 83 btw.  He had 1 treatment so far but he is really sliding fast. he has 4 large masses in his brain, 2 in the front 2 in the back and they have been growing even more and caused bleeding. It has affected his motor skills to where he has basically become wheel chair bound and has a hard time speaking.  It is almost like he knows what he wants to say but it wont spit out.  His memory has been affected and now it seems he  is having problems swallowing so he has been put on a puree diet.  Will Yervoy have really any affect with someone who is 83 years old?   our Oncologist says he is dying and does not see any point to using Yervoy.  I just do not know what to do really.  I dont know if we need to start working to an end of life care situation where we just make him as comfortable as possible, or keep working on it keep seeing him still deteriorate.  It is sad seeing him like this. I can see the sadness almost in his  eyes at times.  He is a mere shell of what he use to be. he has a  problem even answering or proscessing simple questions now.   I am just at a loss.   I do not knokw what to do.  We do not have the means to care for him at home because it  is just too much for  us and our house is not set up for this.  While he is on yervoy treatments from what I understand because it is outpatient he has to be at home and we can not even keep him at the nursing facility while he goes through treatment I dont think.  What options do I have?  how can we take care of him while we continue on the Yervoy assuming the Yervoy is even viable.  He needs basically 24 hour care at this point.    Just from my point of view I almost see the tumors being to far entrenched for any help at his age. My Mother and I are just feeling so confused and helpless. on one hand we want to keep treatment  if it will work, but on the other hand if he is so far off that the yervoy really wont do much, we do not want to extend his unfomfortableness any further, and just make him as comfortable as possible till he slips away.


-Confused and scared.

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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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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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GAngel's picture
Replies 12
Last reply 8/30/2017 - 4:16pm

Dear Karen,

It's been weighing heavy on my heart that you may not have seen my reply back to you on a previous post of yours wherein you stated that Tafinlar is dabrafenib and mekinist combined.  I want to make sure that you know that you have the wrong information as Taflinar is NOT the two combined.  Please read my reply to you regarding this subject which I pasted below.  I just wanted you to realize that you are not presently taking the combo if you are only taking Tafinlar and you should contact your oncologist for further clarification and so that you can start taking the Mekinist (trametinib) with the Tafinlar (dabrafenib), if that was your intention.

"Tafinlar is not dabrafenib and mekinist combined. These are absolutely two separate drugs. Dabrafenib is the scientific/generic name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Trametinib is the scientific/generic name being sold under the trademark name of Mekinist. These drugs can only be dispensed through a specialty pharmacy and will come separately and the Mekinist(Trametinib) is delivered in a cold package and MUST always be refrigerated. Although I have heard of at least one person who was unable to get their insurance to pay for the combo because of the lack of FDA approval our insurance covered both drugs and so have many other insurances, apparently.  At least give it a try as your doctor is not prohibited from prescribing both drugs.  I may be wrong, however, I believe that obtaining FDA approval of the combo will help prevent any insurance coverage issues." 

Wishing you all the best!

Love and blessing to you and yours!


"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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tasjacques's picture
Replies 9
Last reply 10/18/2013 - 7:50pm

Hi Everyone,
We want to share our good news with all the warriors who have supported us through this amazing forum.
My husband, Jacques, had treatment with Z back in January - which helped but very shortly developed Stevens Johnson. Then followed treatment with Yervoy in March - after two infusions had to stop because tumors were growing exponentially :( Spent 6 weeks without treatment - the longest weeks ever!
June 7th he started MK 3475, Scans of targeted tumors in May 10th showed: liver the biggest at 5.9 cm x 7.0 cm, another one at 3.9 cm x 4.8 cm, lung tumors were at 2.1 cm x 1.8 cm, and 1.9 cm x 1.8 cm, and many other ones. By August 27th CT scan (12 weeks) all of them showed a 73-85% reduction!!! Treatment center even repeated the CT scans 4 wks later and still showed more reduction :)
We are super delighted, excited, and are so encourage that we are going to beat this beast! (well at least hoping to)
Jacques has come around from no walking, no talking, and sleeping all day ... to having our first hike this past Sunday, and going swimming in the ocean on Monday.
Take care all of you, keep praying, never give up!
Elenise & Jacques

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john partrick michael murphy's picture
Replies 5
Last reply 10/10/2013 - 9:10am
Replies by: Mat, GAngel, Momrn5, BrianP

I am coming up on three years on the BRAF/MEK combo of GSKs remarkable combo and my Stage IV melanoma remains dormant. However, I have had three knife fights with wild type melanoma sprouting on my face and chest. Had they been the BRAF positive type I think it would have washed me out of this trial I have come to love. Now I insist on "when in doubt, cut it out." One spot only had two of the five indicators, and I insisted it come out. She gave in, and it was already stage II, but they got it out with big margins. This bastard is relentless and we must remain vigilant as it seems to be always on the prowl.

This sucker doesn't like scalpels and stitches but I do. I want every gram of it out of me, and I am still waiting for my first lab report of benign or says when things look fine. There is a whole lot of me, and they only take bits and pieces so I figure this could go on for decades, and that would be just fine.

One cohort is turning albino! Our drugs are not just killing her melanoma, but stopping her whole melanin system. How can you have melanoma, if it has no melanin to mutate? She actually could be cured. We all love her. She has never had an adverse affect, complains about driving 20 miles, and parking at MGH to folks like me who come from Colorado each month. She now has three years I believe and she charms us with her unrealistic expectations and yet she gets the best results. Now she says she misses her liver marks as she looks younger and younger. I think I am also, as they had to use a carpet knee-kicker to stretch my forehead over the silver dollar sized hole they excised last week, and my wrinkles disappeared.
The local dermatologist just removed the stitches, and I had him take out another small spot just for both of us to stay in practice.

The history of the world is the battle between superstition and intelligence.

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30% off-Rip Blu-ray/DVD to H.264/MPEG-4 MP4 for Droid Mini
Description: A basic guide to walk you through transferring Blu-ray/DVD movies to Motorola Droid Mini with best video quality on Windows and Mac.

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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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Erinmay22's picture
Replies 11
Last reply 10/15/2013 - 10:37am

I know I've been slow on updating. Where did the summer go?  I started Merck's anti-pd1 in Jan of this year.  I started to get some shrinkage prior to starting (late responder to ipi?).  I've been on Merck's low dose now for 36+ weeks.  My scans continue to show small tumors getting smaller and nothing new.  (a year ago I had a large tumor removed from my small intestine but they couldn't remove the tumors in the lymph nodes surrounding it).  

This seems to be a great drug so far with minimal side effects.  Fatigue sits in sometime (ok, maybe it's self inflicted?) but so far so good!  

Just wanted to share and provide some hope!  

Erin "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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