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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Tina D's picture
Replies 5
Last reply 1/2/2014 - 3:44pm

First, I want to say Happy New Year to all. I am incredibly grateful to be alive here at the beginning of 2014. When I entered stage IV in 2005, that was a pretty unlikely scenario, so I thank God for each day I am gifted with.

I started Merck's PD1 back in July, initial scans showed a whopping 67% shrinkage! Next scans 6 weeks later were stable with no changes. I will be having scans again on the 12th of January. I am feeling pretty well overall. Biggest issue has been when my thryroid quit entirely, and that has caused some major fatigue, but synthroid is bringing levels back up, and I am def doing better. I do have quite a bit of vitiligo on face and arms; halos around many moles.Eyelashes and brows turning white. I am trusting the Lord with the outcome, but do feel a little anxious about the upcoming scans since the previous ones had no shrinkage at all. My days are in His hands, and I am thankful... so very thankful for all the years He has blessed me with. I will turn 50 this year in April and there never was a woman more happy to be hitting the big five-o.

When I was diagnosed with breast cancer in Jan 2002, and melanoma in March of 02 ... our kiddos were still so young ( 2,5,10,11 and 14) and I was only 37. When I had that first mel recurrence in 2005, I knew my days could be short with my precious family. Thanking the Lord that now our children are 14,17,22,23 and 26 and I am glad for each extra day with them and with my wonderful hubby of 30 years. May each day of this New Year be one you cherish, and make memories with loved ones. Some days are much more trying than others for each of us, and this is not an easy road... but, as I look back, I have so many amazing wonderful memories of blessed days by the scores over these past 12 years since my initial diagnosis.

With a thankful heart, and wishes for a blessed New Year for each of you,

Tina

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Anonymous's picture
Anonymous
Replies 15
Last reply 1/10/2014 - 1:18pm
Replies by: Jahendry12, Anonymous, JoshF

Kaufman is leaving Chicago? Where is he going?   Does Rush have another melanoma specialist?

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hdelancey23's picture
Replies 16
Last reply 1/22/2014 - 11:41am

I wanted to update everyone about my Mom's condition.  She was admitted into the hospital yesterday.  She came down to town to go to her Radiation Oncologist about starting WBR her appointment was at one o clock.  at 8:00AM she had her mom call 911 because she couldn't move.  She went into the emergency room in severe pain.  Nothing they could do could stop the pain and get her to be able to move on her own.  We still wanted her to go to her appointment but she just couldn't make it.  She was admitted into the hospital at 2:45 and put on a hydromorphone drip.  She has a push button that enables her to administer as much morphine as she needs and they are also giving her norco's.  She was in and out of consciousness and in distress when we left. Last night was good she was coherent and up and talking to all of us.  We got to say goodbye and that we loved her very much.  She is still at the hospital now and they are trying as hard as they can to manage her pain.  She fought so hard and long and unfortunately her body just couldn't take it anymore.  I told her how much everyone on here loves her and that you guys say how strong she is and that you all love her.  That brought her comfort.  I pray that she doesn't have to suffer much longer and that soon the pain and suffering will be gone and she will finally be at peace without sickness and hurt.  I do have a question for anyone that might know.  She really wanted to donate her body to science but her boyfriend does not know where the paperwork is for that.  If we can not find the paperwork what can we do to ensure that her wishes are fuflfilled and that her body does get donated to science for melanoma research?  It is still hard to believe that this is happening. I will miss her so much. 

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blden2186's picture
Replies 3
Last reply 1/1/2014 - 8:14pm
Replies by: johnbil, POW, Anonymous

I had my 3rd recurrence of melanoma in my left leg this past year.  Went through a month of interferon infusions,  radiation, and am week 18 of the 48 week self injections.   I am so tired, headaches, pin point rash, GI issues, dizziness.  Still working 30-36 hours a week.   Thinking of quitting injections - has anyone else been through this and made decision to quit early?  My oncologists (Humphrey CA Center) know I am considering stopping. 

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lll.ll.lll.ll.lll's picture
Replies 3
Last reply 1/1/2014 - 9:51am

So even tho I struggle with being tired I'm still trying to make it to the gym a few times a week, especially now that I'm off for a bit. And stretching for my upcoming back workout I feel the muscle under where my biopsy was taken is sore.. not necessarily the entire muscle (my left lat) but just underneath the area. Not thinking I slept wrong, I generally sleep on my stomach. It only hurts twisting so Im just going to limit any exercises that involve that and see how it plays out the next couple days I think.

Anyway have a great and safe new year

thanks for reading

Adam McCurry

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Mat's picture
Replies 8
Last reply 1/2/2014 - 5:13pm

As I approach my resolutions for 2014--a surreal experience this year given my Stage IV diagnosis a few months ago--I'm thinking about diet.  Admittedly, other than avoiding eye contact with the vending machine at my office, I haven't made many changes since my diagnosis.  I try to stay away from red meat, eat more and organic fruits and veggies, etc.  I've done a poor job of cutting out desserts--I enjoy them too much.  So, I'm thinking about my diet and wondering if I should be making more significant changes.  I looked through prior posts and it appears that opinions on diets are about as mild and in agreement as those on politics, religion, creation versus evolution, etc.  I also did some independent internet research and found nothing terribly convincing.  In the end, I've decided to skip major changes.  Wishing you all a happy, healthy (relatively speaking) and prosperous New Year.

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BrianP's picture
Replies 9
Last reply 1/3/2014 - 7:15pm

Can anyone share their experience with an enlarged lymph node that turned out to be melanoma?  Was it tender to the touch?  My positive lymph node in my armpit back in 2011 was not sensitive to the touch at all.  I remember at the time the general practice physician mentioning that along with my past melanoma history the fact that it wasn't sore to the touch caused her to be a little more concerned.  I now have a slightly enlarged lymph node in my left groin that is very sensitive to the touch.  I have a check up next Monday and will obviously address it then but was curious what others have experienced in this regard.

Thanks,

Brian

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Jahendry12's picture
Replies 10
Last reply 1/2/2014 - 5:33pm
Replies by: Janner, Anonymous, JerryfromFauq, Jahendry12

Hi - I am fairly new to this site.  My husband was diagnosed with Nodular Melanoma in April 2011.  He had surgery to remove the melanoma from his leg as well as SNB.  The SNB came back with 'traces' of melanoma.  Our melanoma doctor advised a groin dissection and all lymph nodes were removed.  NONE came back with melanoma.  He was doing good, following up with scans, body checks, etc.  March of this year they found a nodule on his lung.  He was sent for a PET and then surgery to remove the nodule.  It came back as melanoma.  He just had another surgery to remove 3 more nodes from his lung as well as some lymph nodes that were enlarged.  Our Christmas present this year, was the pathology coming back as NO MELANOMA. 

So, my question.  I have never asked what 'stage' my husband is at because I knew it was bad from the beginning, but I just didn't want to live life thinking about a stage.  Since the melanoma has been found on the lung, does that mean he is automatically at stage 4?   I know I should know the Tumor thickness & Mitotic rate, but I do not.  I do know that it was ulcerated & he had had it on his leg for about 8 months.  My guess is that he was Stage  IIIc or 4.  He has blood taken every 3 months and it has always come back near perfect.  He is healthy & has been asymptomatic from day 1. 

Is there a way to tell what stage he is without knowing the exact thickness?

Thanks for any information any one can provide.

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Pink's picture
Replies 3
Last reply 12/31/2013 - 1:49pm
Replies by: POW, Pink

I had to request a new pass word which is only good for 24 hrs, how do I change my password?

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Pink's picture
Replies 3
Last reply 1/2/2014 - 2:12am
Replies by: JerryfromFauq, POW, Momrn5

2006 diagnoses with Mel on leg, wide excision. Now I have nodules in my leg and went for isolated infusion in my leg, the nodules in leg responded well but foll up PET showers mets to shoulder and back and brain mets. Going back to Moffit next week for consultation for stereotactic radiation and to get started on Ipi. How are the results with the radiation I have 3small ones and worried about getting rid of them.

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kab07011's picture
Replies 5
Last reply 1/3/2014 - 8:05am

Hi everyone,

I was diagnosed with stage 1B (.97) ulcerated in Oct 2009 and had a WLE and SNB negative then on my lower back. They took lots of fat and muscle tissue from under there. Only follow-ups are derm appts every 6 months. I have had 2 children since then. Baby is 7 months old now and I do carry her a good bit of the day..however, MAJOR back pain started on Christmas, I had a little here and there that would go away up until then, but nothing like this. I can't even sleep at night. I am nursing and Tylenol did not touch the pain.

I also have some bruising and itching the few days before the severe pain. I did not fall or do anything in that area and those are the only symptoms I have had.

So now here I am with bad low back pain, right in area of origiinal mel, which radiates to front pelvic region. I am thinking the worst and having a hard time functioning.

Who do I even talk to about this the gynecologist, dermatologist, family doctor or chiropractor? Should I just take an antibiotic to see if it is something infected in the pelvic region. Blood work? CAT scan? What else can it be before thinking the worst? Nerve issues/bladder infection. It hurts even relaxing or sitting. Sigh..

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JerryfromFauq's picture
Replies 5
Last reply 1/2/2014 - 3:30am
Replies by: BrianP, JerryfromFauq, Anonymous, JoshF, POW

What You Need to Know About Interleukin-2 for Metastatic Melanoma.

"Melanoma." National Comprehensive Cancer Network. V.1.2009. 27 January 2009.

"Proleukin Prescribing Information." Novartis Pharmaceuticals Corp. 27 January 2009.

Smith FO, Downey SG, Klapper JA, et al. Treatment of metastatic melanoma using interleukin-2 alone or in conjunction with vaccines. Clin Cancer Res 2008 14:5610-5618. 27 January 2009.

This overview will arm you with the critical information you need to understand how it works, its effectiveness and its side effects.

Other Names (United States)
Proleukin, aldesleukin
Approved

1998
Description

IL-2 was approved by the Food and Drug Administration for the treatment of metastatic melanoma in 1998.

IL-2 is different than a chemotherapy drug -- it is actually a natural part of your body's immune system. It is a type of messenger molecule called a "cytokine" that is secreted from certain cells to alert other cells about an infectious invader. At least 15 different kinds of interleukins have been discovered since the 1970s: IL-2 is known to specifically stimulate the growth and maturation of two kinds of white blood cells, called "T and B lymphocytes." The IL-2 used to treat metastatic melanoma doesn't come from the body but rather is mass produced, using the techniques of genetic engineering. It has the same properties as the natural version, but it has a slightly different name, aldesleukin.

Evidence for the Effectiveness of Interleukin-2

In the studies that led to approval, 6% of selected patients (those in good physical and mental condition) with metastatic melanoma had a complete response to high-dose IL-2, and 10% had a partial response. A complete response is defined as a long-lasting (10+ years and counting) elimination of the disease, although it is not technically a "cure." Regardless of the terminology, it is the only drug available that even has the possibility of such a profoundly positive and lengthy effect. Responses were observed in patients with a variety of metastases, including in the lung, liver, lymph nodes, soft tissue, adrenal glands and subcutaneous (deep) layers of the skin. IL-2, however, has not previously been recommended for patients with existing brain metastases.

Many clinical trials have been conducted (and are still being conducted) in an attempt to increase the response rates of IL-2 by combining it with other medicines. For example, a study demonstrated higher response rates when IL-2 was given in combination with a vaccine (22%) compared to IL-2 alone (13%). Unfortunately, many attempts to combine IL-2 with various chemotherapy drugs (cisplatin, vinblastine, dacarbazine and others) -- an approach called "biochemotherapy" -- as well as with other drugs (interferon-alfa2b, etc), have thus far shown no significant improvement in the statistic that really counts: survival time.

Use of Interleukin-2

IL-2 is given by a 15-minute IV infusion every 8 hours for 5 days. Each treatment course consists of two 5-day treatment cycles separated by a 9-day rest period, and multiple courses are the norm. You will typically be imaged about a month after finishing your first treatment. If you are responding, you'll likely be offered a second course of treatment for 6 to 12 weeks after finishing the first course. To be eligible for IL-2 treatment, you must be in relatively good physical condition, with good heart, lung, liver and kidney function.

Potential Side Effects

IL-2 has frequent, often serious and sometimes fatal side effects. It should be given in a hospital under the supervision of a qualified physician experienced in the use of anticancer agents. An intensive care facility and specialists skilled in cardiopulmonary or intensive care medicine must be available. The rate of drug-related deaths in clinical trials of metastatic melanoma patients who received IL-2 was 2%.

Many of the side effects are due to "capillary leak," which begins immediately after treatment is started. Capillary leak results in the leakage of proteins out of blood that then causes a decrease in blood pressure. The most common side effects are as follows:

    nausea, vomiting, diarrhea, loss of appetite
    weakness and fatigue
    flu-like symptoms (fever, chills, headache and muscle aches)
    low blood pressure
    general pain, chest pain (angina)
    breathing problems due to fluid in the lungs
    weight gain, fluid retention
    mental effects (paranoia, hallucinations, insomnia)
    itching, peeling skin
    anemia (low red blood cell count)
    low platelet count (increasing the risk of bleeding)
    low white blood cell count
    kidney damage
    mouth sores

These side effects are rarer but have been reported in some people taking IL-2:

    abnormal heart rhythm, heart attack
    respiratory failure
    severe infections
    gastrointestinal bleeding
    thyroid problems
    liver problems
    severe dizziness, fainting

Cautions/Interactions

IL-2 can make the side effects of other drugs and diseases much worse, so tell your doctor if you have:

    kidney problems
    heart disease
    liver disease
    lung disease
    a seizure disorder
    thyroid disorder
    infections
    any allergies
    any immune disorders

Also let your doctor know about any over-the-counter or prescription medications you use, especially corticosteroids, indomethacin, blood pressure drugs, antidepressants, anti-anxiety drugs or other anticancer medications. Do not start or stop any medicine without doctor approval.

Sources:

 

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

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What You Need to Know About Interleukin-2 for Metastatic Melanoma.

"Melanoma." National Comprehensive Cancer Network. V.1.2009. 27 January 2009.

"Proleukin Prescribing Information." Novartis Pharmaceuticals Corp. 27 January 2009.

Smith FO, Downey SG, Klapper JA, et al. Treatment of metastatic melanoma using interleukin-2 alone or in conjunction with vaccines. Clin Cancer Res 2008 14:5610-5618. 27 January 2009.

This overview will arm you with the critical information you need to understand how it works, its effectiveness and its side effects.

Other Names (United States)
Proleukin, aldesleukin
Approved

1998
Description

IL-2 was approved by the Food and Drug Administration for the treatment of metastatic melanoma in 1998.

IL-2 is different than a chemotherapy drug -- it is actually a natural part of your body's immune system. It is a type of messenger molecule called a "cytokine" that is secreted from certain cells to alert other cells about an infectious invader. At least 15 different kinds of interleukins have been discovered since the 1970s: IL-2 is known to specifically stimulate the growth and maturation of two kinds of white blood cells, called "T and B lymphocytes." The IL-2 used to treat metastatic melanoma doesn't come from the body but rather is mass produced, using the techniques of genetic engineering. It has the same properties as the natural version, but it has a slightly different name, aldesleukin.

Evidence for the Effectiveness of Interleukin-2

In the studies that led to approval, 6% of selected patients (those in good physical and mental condition) with metastatic melanoma had a complete response to high-dose IL-2, and 10% had a partial response. A complete response is defined as a long-lasting (10+ years and counting) elimination of the disease, although it is not technically a "cure." Regardless of the terminology, it is the only drug available that even has the possibility of such a profoundly positive and lengthy effect. Responses were observed in patients with a variety of metastases, including in the lung, liver, lymph nodes, soft tissue, adrenal glands and subcutaneous (deep) layers of the skin. IL-2, however, has not previously been recommended for patients with existing brain metastases.

Many clinical trials have been conducted (and are still being conducted) in an attempt to increase the response rates of IL-2 by combining it with other medicines. For example, a study demonstrated higher response rates when IL-2 was given in combination with a vaccine (22%) compared to IL-2 alone (13%). Unfortunately, many attempts to combine IL-2 with various chemotherapy drugs (cisplatin, vinblastine, dacarbazine and others) -- an approach called "biochemotherapy" -- as well as with other drugs (interferon-alfa2b, etc), have thus far shown no significant improvement in the statistic that really counts: survival time.

Use of Interleukin-2

IL-2 is given by a 15-minute IV infusion every 8 hours for 5 days. Each treatment course consists of two 5-day treatment cycles separated by a 9-day rest period, and multiple courses are the norm. You will typically be imaged about a month after finishing your first treatment. If you are responding, you'll likely be offered a second course of treatment for 6 to 12 weeks after finishing the first course. To be eligible for IL-2 treatment, you must be in relatively good physical condition, with good heart, lung, liver and kidney function.

Potential Side Effects

IL-2 has frequent, often serious and sometimes fatal side effects. It should be given in a hospital under the supervision of a qualified physician experienced in the use of anticancer agents. An intensive care facility and specialists skilled in cardiopulmonary or intensive care medicine must be available. The rate of drug-related deaths in clinical trials of metastatic melanoma patients who received IL-2 was 2%.

Many of the side effects are due to "capillary leak," which begins immediately after treatment is started. Capillary leak results in the leakage of proteins out of blood that then causes a decrease in blood pressure. The most common side effects are as follows:

    nausea, vomiting, diarrhea, loss of appetite
    weakness and fatigue
    flu-like symptoms (fever, chills, headache and muscle aches)
    low blood pressure
    general pain, chest pain (angina)
    breathing problems due to fluid in the lungs
    weight gain, fluid retention
    mental effects (paranoia, hallucinations, insomnia)
    itching, peeling skin
    anemia (low red blood cell count)
    low platelet count (increasing the risk of bleeding)
    low white blood cell count
    kidney damage
    mouth sores

These side effects are rarer but have been reported in some people taking IL-2:

    abnormal heart rhythm, heart attack
    respiratory failure
    severe infections
    gastrointestinal bleeding
    thyroid problems
    liver problems
    severe dizziness, fainting

Cautions/Interactions

IL-2 can make the side effects of other drugs and diseases much worse, so tell your doctor if you have:

    kidney problems
    heart disease
    liver disease
    lung disease
    a seizure disorder
    thyroid disorder
    infections
    any allergies
    any immune disorders

Also let your doctor know about any over-the-counter or prescription medications you use, especially corticosteroids, indomethacin, blood pressure drugs, antidepressants, anti-anxiety drugs or other anticancer medications. Do not start or stop any medicine without doctor approval.

Sources:

 

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

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WendyD.'s picture
Replies 5
Last reply 12/31/2013 - 3:50pm
Replies by: Anonymous, WendyD., BrianP, Janner

I have to admit once I was diagnosed with melanoma I did what most of us did. I Googled everything I could on melanoma. I wanted to know what I was facing. Well, during all of the research I got confused on something. How can doctors/pathologists stage someone a stage T1a melanoma when there usually isn't a SNB done for thin lesions? How would anyone truly know that someone is a T1a without knowing if the melanoma has spread to nearby lympnodes? Another thing I would like to know is what are the chances of a thin lesion spreading that had no mitosis and no ucleration and was less than 1mm thick? If someone has links to web pages stating percentages of chance of spread I would definitely like to see it. It seems everything I have read so far says it can only truly be a T1a if it hasn't spread, which goes back to how do we truly know if the SNB was never done? Ok sorry for all the questions, but I really want to know this stuff.

In God I Trustsmiley!

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BrianP's picture
Replies 1
Last reply 12/30/2013 - 9:54pm
Replies by: BrianP

A small subset of patients with supposedly nongenetically driven melanomas respond to molecularly targeted treatment with an MEK inhibitor, according to recent findings released today.

Two novel genetic fusions involving BRAF – PAPSS1-BRAF and TRIM24-BRAF – were present in 2 of 24 (8%) of pan-negative melanoma samples tested. Both BRAF fusions activate the MAPK signaling pathway, and tumors found harboring either genetic fusion were more sensitive to treatment with trametinib than with the BRAF inhibitor vemurafenib, reported Dr. Jeffrey A. Sosman, professor of medicine, director of the melanoma and tumor immunotherapy program, and co-leader of the VICC signal transduction and cell proliferation research program of the Vanderbilt-Ingram Cancer Center in Nashville, Tenn., and his associates.

“About 35% of melanomas are, as of today, considered pan negative, which means they are devoid of any previously known driver mutations in the genes BRAF, NRAS, KIT, GNAQ, and GNA11,” Dr. Sosman explained in a press release issued by the American Association of Cancer Research.

“Our data support the idea that pan-negative cancers are not truly pan negative,” he added, noting the results are “important because they suggest that there probably are other, as yet unidentified, molecular changes that make these melanomas susceptible to drugs that are available right now.”

Dr. Sosman and his associates have spent several years assessing pan-negative tumors for any potential genetic anomalies other than those already known that could offer targets for molecularly driven treatment. Their discovery of PAPSS1-BRAF came from examination of a sample from a 27-year-old woman with stage IIIC malignant melanoma involving almost all the axillary lymph nodes. Despite irradiation and experimental and standard immunotherapies, the patient progressed rapidly and died just 11 months after her diagnosis.

Some of you more technical savy folks might find this article interesting.  Just don't ask me to explain it!

 

The patient’s sample had been genotyped using the, which examines more than 3,000 exons in 182 cancer-related genes and 37 introns and in 14 genes recurrently rearranged in cancer. The assay simultaneously looks for any single nucleotide variants, insertions, deletions, copy number changes, and selected genetic rearrangements.

They found a large genomic deletion in BRAF and a region on chromosome 7 suggesting that two genes were possibly fused together. Subsequent targeted RNA sequencing of complementary DNA identified PAPSS1-BRAF and further studies showed that it activated the MAPK signaling pathway and that this activation was more sensitive to inhibition with a MEK inhibitor than with a BRAF inhibition.

The team then evaluated a further 51 melanoma samples, of which the majority were supposedly pan negative – only eight had BRAF V600 changes and seven had other, non-V600 changes. TRIM24-BRAF was also identified and found to affect the MAPK signalling pathway and be more sensitive to MEK than BRAF inhibition.

The team also analyzed RNA, whole genome, and whole-exome sequencing data from an independent cutaneous dataset available from the Cancer Genome Atlas and found BRAF fusions in two of 49 of pan-negative melanoma cases researchers.

“Collectively, these data suggest that BRAF fusions exist in 4%-8% of pan-negative melanomas,” the researchers reported. “Coupled with the fact that the transforming ability of multiple BRAF fusions has already been established, we believe enough evidence exists to raise awareness that BRAF fusions are present in this ‘pan-negative’ population.”

This could have implications for clinical trials involving therapies that target the MAPK signaling pathway and explain why unexpected clinical responses are sometimes seen with MEK inhibitor therapy. The findings could also help clinicians select patients for MEK-directed therapy.

Dr. Sosman and associates conclude (Clin. Cancer Res. 2013 Dec. 17;19:6696-702): “BRAF fusions represent a new, potentially clinically relevant target in melanomas possibly treatable with kinase inhibitors.”

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