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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Annalive's picture
Replies 1
Last reply 8/9/2014 - 12:24pm
Replies by: arthurjedi007

Hello All,

I recently had a surgery for metastatic tumor near L4-L5 spine.  Because of close proximity to spinal nerve root, doctors ended up doing a partial ressection.  They are now suggesting that I do 3 doses of high dose Stereotactic Radiation to rid body of remaining cells at that site.  Recent PET showed no new sites of disease. There is still some risk of nerve damage.  I have never done radiation and am wondering if anyone has experience with this type of treatment? outcomes? side effects?  Thank You,  Ann 

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MattF's picture
Replies 6
Last reply 8/13/2014 - 10:44am

ok guys mulitple bone mets in back and left femur etc.

combo failed last week and we jumped to Yervoy

MRI results from last week scan

 

6 Nodules of Melanoma Metastasis within the breain......all under 20mm in carious loacations

what am I in for when I meet with the Radiation Oncologist?

 

treatment tyes...

etc

 

Matt

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/12/2014 - 11:49pm

My wife has stage 3 melanoma which has been excised and has had a sentinel removed which was positive. She also had a PET scan and brain MRI which were negative. Her surgeon is proposing a radical lymph dissection of the lymph nodes surrounding the sentinel. Has anyone skipped the lymph node dissection surgery and gone straight to a non surgical solution like interferron? Did this approach work for you?

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rick1981's picture
Replies 0

One more topic from me this morning :)

I know QUACKERY isn't really appreciated on these pages, and many of the alternative treatments I've found on the web are labelled as just that on sites like cancer.gov. However, the only one so far where cancer.gov but also Sloan Kettering are actually fairly positive about is Zyflamend (called Zyflamax in Europe). It's a mix of tumeric/curcuma and 9 other herbs/spices and Sloan Kettering has actually conducted several studies on it - surprisingly. They now say "Zyflamend may have additive effects" to chemo. And there is a recent article on melanoma as well: http://www.agt-info.org/Documents/2014%20Annual%20Meeting/HANDOUT%20Yo%20-%20Student%20Research%20Award.pdf

Anyone here with experience using this for melanoma?I didn't come up in the search.

 

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rick1981's picture
Replies 5
Last reply 8/13/2014 - 12:47pm

Hello,

I was browsing the ASCO library and found this on immuno therapy...

http://www.ascopost.com/issues/july-25,-2014/intralesional-injections-trigger-immune-responses-in-melanoma.aspx

Could this be the next generation after nivo & pembro?? Seems quite promising. Anyone here participated in any trials?

Best regards, Rick

 

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Hey everyone. I just got my radiology report from a CT I had done on Wednesday. Good news is that the tumor in my upper left axila (lymph node) has shrunk from 3.3cm to 2.2cm from with yervoy or radiation or both. Bad news is there is a 5.4cm platelike mass in the apex of my left lung. The notes say it can either be signs of matastasis or it may be caused by the radiation done to my upper left axila above my lung. Has anyone had experience with a mass or imflination of the lung from radiation? I am nervous but meet with Onc tomorrow to go over results. 

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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Insight, Analysis & Opinion

Discerning the importance of Merck's pembrolizumab likely becoming the first PD-1 therapy to reach the market in the US is challenging. From a sentiment perspective, a confirmed PDUFA date for October 28 has helped to drive conviction among Merck's investors that the company has gained ground on Bristol-Myers Squibb, which 12 months ago appeared to have a more discernible lead in this particular race.

From a commercial perspective, the data generated for pembrolizumab suggests that once approval for Yervoy-refractory (i.e. second-line) melanoma occurs, there will be earlier usage of the product in the treatment paradigm. Indeed, when FirstWord polled 70 US-based oncologists after the ASCO annual meeting in May, they suggested that based on currently-available data they would prescribe pembrolizumab to around a third of first-line patients in an off-label capacity – a trend that could be enhanced if Merck's drug also receives NCCN guideline support.

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ABELL's picture
Replies 16
Last reply 8/16/2014 - 12:59pm

Hello,

My best friend, co-worker, second mother, all of the above has been diagnosed with Stage IV. First diagsosis was about 8 years ago, removed melanoma on neck, no radiation needed.

Recurrence happened in 11/13. Same spot on neck, this time it had spread to some lymph nodes. They removed the tumor, some muscle, partial thyroidectomy & some lymph nodes.

After surgery and radiation, PET scan showed NED.

6 month PET scan was scheduled for 7/26- day after my wedding. She went to scan appointment and was scheduled to hear the results by the next tuesday.

Monday night after work, she said she didn't feel well. Nauseous. She had a seizure about 9:30pm and was rushed to emergency.

They did a CT scan (she hit her head, needed stiched and had slight concussion).

The melanoma had metastasized to her brain, 2 tumors in her frontal lobe, her spine, liver and lung.

IN 6 MONTHS!?!?!

They are doing radiation to her spine, Cyberknife to her brain & I believe biochemotherepy for her liver & lung. She is on steriods & anti-anxiety meds. They told her she has a year.

Anyone familiar with this? I have been obsessed with the internet finding horrible stories & statistics. NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!

Life is upside down, how do you get past the gloom and doom & look for a light at the end of the tunnel for her?

Any stories, suggestions & help would be appreciated. Thank you!

~A

 

 

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ashleyelizabeth's picture
Replies 2
Last reply 8/9/2014 - 11:30pm
Replies by: JerryfromFauq, Janner

I recently joined this blog when I was told by my GP that I had Melanoma.  I jumped to every conclusion in the book because I have a history of Anxiety and a little Hypochindriac. Since being told about the Melanoma I have started t feel sick have a cough and swolen neck/glands.  Of course I am not a doctor but my family says it's because since I was told the news I have been online reading everyone's stories and stressing about every little mark and mole on my body.  I met with my GP after the weekend and asked a bunch of questions (depth, stage of cancer, next steps, etc).  Most she didn't know but I did request a copy of my histopathology report.  The diagnosis say "MELANOMA IN SITU".  My doctor says she car say for sure it's spread bit she doesn't think so.  She also said she was thinking about sending me for a CT but said she would leave that up to the plastic surgeon.  I am still waiting to be referred to a plastic surgeon as well as a dermatologist so he can examine the rest of my moles.  

What I am wondering is, should I get a second opnion? Could the diagnosis be wrong and it's worse? I am also pan acing about all my other moles and marks.  I am convinced there are more.  The mole I had removed was VERY obvious (black, then light, slightly raised, odly shaped), none that I have now look like that but I still worry.

Thanks for your help! I am sorry for all the questions but I was just told a week ago today :(

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Anonymous's picture
Replies 9
Last reply 8/11/2014 - 2:04am

Hi!

A friend of mine aged about 60 years has been diagnosed with Melanoma Left Heel with left Inguino Pelvic. She underwent a surgery  which was wide local excision of Heel Lesion with superficial and Deep Ingunial Block Dissection with Left Pelvic Lymphnode Dissection with Heel Defect Reconstruction with Medial Plantar Flap.

Post surgery, doctor has kept her under observation with regular CT scans and blood tests on a 6 week basis with no other treatment of chemotheraphy, radiation therpahy or interferons. I am a bit concerned if this is alright as how will the spread contain without treatment.

Can anyone please advice. Also what all food intake can help contain the spread.

Look forward.

Best

 

God bless you

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emily_f's picture
Replies 7
Last reply 8/9/2014 - 1:31pm
Replies by: Treadlightly, BrianP, madhatter84, Anonymous, tschmith, DZnDef

I recently had an early melanoma removed from my arm with clear margins. I will now have check ups every three months. I am wondering if any of you have advice/information on how to boost my immune system?  I can't help but think there could be an underlying problem within my body that allowed melanoma to develop. Thoughts? Strategies?

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/7/2014 - 7:25am
Replies by: Ginger8888, Anonymous

People with moderate-to-severe Vitamin D deficiencies are significantly more likely to develop Alzheimer's disease or other forms of dementia 

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Anonymous's picture
Replies 3
Last reply 8/8/2014 - 7:51pm
Replies by: DZnDef, ecc26, Anonymous

Does anyone have any inforamtion about being able to drive after having gamma knife radiation surgery for brain mets? Links to webistes appreciated.

I am not finding much online about this and need to ask a doctor some questions.

There is no history of seizures, headaches...and more than one tumor treated. So far, there are no new tumors. There was a reocurance and treatment 6 months after the first treatment.  But so far no additional turmors have been found.

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maradams's picture
Replies 5
Last reply 8/6/2014 - 4:56pm

My husband was diagnosed with melanoma last October, although given the depth and size of the tumor, he proabably had it for quite some time.    It was underneath his hair on his scalp.   He had the tumor removed and had a skin graft and underwent interferon treatments and Sylatron.   He had a PET Scan in April and they found tiny tumors in his left lung.    So in May and June he underwent Hi Dose interlueukin 2 (two rounds--13/14 the first time and 11/14 the second time).   He had a PET Scan on Thursday and it showed the tumors grew slightly.    Now the doctor wants him to undergo Yervoy treatments starting next Tuesday. 

My husband is feeling very frustrated.   We never got a second opinion, we went to Hershey Medical Center because it was close.     I tried making different appointments with different doctors from other hospitals (Johns Hopkins, U of PA, Jefferson, etc.) but always had to cancel because it takes so long to get an appointment and it never failed that those appointments fell on a day he was undergoing a treatment or a PET Scan.    My husband wants to try to go someplace else, however, he doesn't want to waste time by not going to the treatment next week.    I am at a loss.    I want the best for my husband, but I don't know where to go or what to do.    I called Sloan Kettering, but they told me that since he has already started treatments somewhere, they will not see him.   

Any suggestions would be welcome.

 

 

 

MSA

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vicuk's picture
Replies 6
Last reply 8/11/2014 - 5:37am

My friend Helen has just had results from latest scan and all tumours either decayed or too small to measure and are being held stable. She has been been on Dab/Tram trial for 2 years and 1 month and was initially given 6 months to live.

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