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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JoshF's picture
Replies 4
Last reply 2/26/2013 - 7:17am

Had scans yesterday. Almost 2 years NED(May). Onc feels real comfortable with my situation. Never found primary and felt this was a dermal primary. At this point onc doesn't feel scans are necessary anymore. Thinks I'm in good place as chance of recurrence is below 10%. This obviously makes me happy but I still have reservations. We all know how tricky this cancer can be...keep wondering if its laying in wait to rear it's ugly head again. You see so many cases on this site where people are given all clear only to have their world rocked again. So though happy not necessarily overly confident. Any suggestions out there?

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

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Hi all

Diagnosed late in 2012: Back tumor, Breslow 14mm, mitotic 12mm, Clark's IV, ulcerated. Tumor recurred in original excision site (before WLE) in about 4 weeks, at 7mm.

SNLB showed positive nodes under both arms (1 of 2, and 2 of 5). So doctors are giving me the option of having both full dissections, or not. Chance of morbidity is higher when two dissections are done, they say. At this point, I'm essentially IIIC, with a very active cancer. Is it worth it to have the dissections, and risk a lower quality of life (I'm generally a very active guy, and my work requires me to be), or just accept that it's probably systemic, and just watch and wait?

Thanks, 

John

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JerryfromFauq's picture
Replies 7
Last reply 2/25/2013 - 8:08am

Can anyone get in the chat room tonight?    I ws  in it talkiing to a young lady around 5 pm EST and it disappeared and I have been umable to get it back up sincd then,

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

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akkcak's picture
Replies 3
Last reply 2/23/2013 - 12:54am

I had a pet scan this morning. The technician asked me as we were walking in if i had any metal and i said no. It dawned on me after i left that i had forgotten about the underwire in my bra. Is this going to cause a problem?
I also had a mri of my brain last week that showed a 4 mm spot. This may be a stupid question, but how do they determine it is melanoma from just pictures(mri/pet)? Now the waiting game. Hoping it's just because i'm super smart and my brain is growing.
I'm currently in my 7th month of low dose interferon.

Thanks!
Amy

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neki's picture
Replies 8
Last reply 2/23/2013 - 12:40am

My dad just finished the high dose Interferon last week, and this is his first week of the low dose 3x a week. He's sleeping 20+ hours a day and starting this week is having a tough time finishing his sentences. Sometimes he's so out of it that it feels like he's disoriented/confused...but it may be that he's just asleep or sleepy. 

Is this the normal fatigue that I read about in the side effects that people talk about? Did anyone experience similar side effects?

Thanks for any information. This board has been very helpful in researching what to do as we move along in this process.

Thanks!!

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http://learn.genetics.utah.edu/ AND http://learn.genetics.utah.edu/content/tech/genetherapy/gtchallenges/ CHALLENGES IN GENE THERAPY Gene therapy is not a new field; it has been evolving for decades. Despite the best efforts of researchers around the world, however, gene therapy has seen only limited success. Why? The answer is that gene therapy poses one of the greatest technical challenges in modern medicine. It is very hard to introduce new genes into cells of the body. Let's look at some of the main technical issues in gene therapy. Gene delivery and activation Gene therapy will work only if we can deliver a normal gene to a large number of cells - say, several million - in a tissue. And they have to be the correct cells, in the correct tissue. Once the gene reaches its destination, it must be activated, or turned on to produce the protein encoded by the gene. Gene delivery and activation are the biggest obstacles facing gene therapy researchers. Tools of the Trade highlights some of the most common methods for addressing these challenges. Introducing changes into the germline Targeting a gene to the correct cells is crucial to the success of any gene therapy treatment. Just as important, though, is making sure that the gene is not incorporated into the wrong cells. Delivering a gene to the wrong tissue would be inefficient and could cause health problems for the patient. For example, improper targeting could incorporate the therapeutic gene into a patient's germline, or reproductive cells, which ultimately produce sperm and eggs. Should this happen, the patient would pass the introduced gene on to his or her offspring. The consequences would vary, depending on the type of gene introduced. Immune response Our immune systems are very good at fighting off intruders such as bacteria, viruses and Jesse Gelsinger other biological substances. Gene delivery vectors must be able to escape the body's natural surveillance systems. Failure to do so can cause serious illness or even death. The story of Jesse Gelsinger illustrates this challenge well. Gelsinger, who had a rare liver disorder, participated in a 1999 gene therapy trial at the University of Pennsylvania. He died of complications from an inflammatory response shortly after receiving a dose of experimental adenovirus vector. His death halted all gene therapy trials in the United States for a time, sparking a much-needed discussion on how best to regulate experimental trials and report health problems in volunteer patients. Disrupting important genes in target cells The best gene therapy David Vetter is the one that lasts. Ideally, we would want a gene that is introduced into a group of cells to remain there and continue working. For this to happen, the newly introduced gene must become a permanent part of each cell's genome, usually by integrating, or "stitching" itself, into the cell's existing DNA. But what happens if the gene stitches itself into an inappropriate location, disrupting another gene? This happened recently in a gene therapy trial to treat several children with X-linked Severe Combined Immune Deficiency (SCID). People with this disorder have virtually no immune protection against bacteria and viruses. To escape infections and illnesses, they must live in a completely germ-free environment. In the late 1990s, Ryes Evans researchers tested a gene therapy treatment that would restore the function of a crucial gene, gamma c, to cells of the immune system. This treatment appeared very successful, restoring immune function to most of the children who received it. But later, two of these children developed leukemia. Researchers found that the leukemia occurred because the newly transferred gamma c gene had stitched itself into the wrong place, interrupting the function of a gene that normally helps regulate the rate at which cells divide. As a result, the cells began to divide out of control, causing the blood cancer leukemia. Although doctors have treated the children successfully with chemotherapy, the fact that they developed leukemia during treatment raises another important safety-related issue that gene therapy researchers must address

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

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Erica A's picture
Replies 6
Last reply 2/24/2013 - 4:35pm
Replies by: Tina D, Anonymous, triciad, randallgford, JoshF, Hstevens0072

Rarely on, but since I am I wanted to continue my tradition of positng positive melanoma news.  My husband, Ken, is a stage 4 survivor and cancer free 8 years this June!!!  There is always hope and people do make it to the other side.  As always, feel free to contact me (wife Erica) for any reason. 

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Erica A's picture
Replies 1
Last reply 2/22/2013 - 5:05pm
Replies by: Gene_S

Rarely on, but since I am I wanted to continue my tradition of positng positive melanoma news.  My husband, Ken, is a stage 4 survivor and cancer free 8 years this June!!!  There is always hope and people do make it to the other side.  As always, feel free to contact me (wife Erica) for any reason. 

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dian in spokane's picture
Replies 7
Last reply 2/22/2013 - 5:04pm

So I finally have an appt with Seattle Cancer Care Alliance. I'll be seeing Dr. Thompson on Wednesday. It works out well since bob and I were planning on driving over on Thursday, so we'll be able to combine this trip instead of having to make two.

Because of my previous experience with second opinions, I expect them to agree with my own doctor. BUT, they do have several trials. One way or the other, I'll be able to pick his brain a little and decide what my main plan will be, and what my back up plan will be.

Got my hair all cut off too, so I'm all ..ready for the fight.

 

DIan

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HI Everyone,

Due to the time difference those of you on the west coast may want to meet later, I realize 7PM is early for you.  Several west coast people do come to chat later.  See you there.

Love and Light

Carole

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Bunmom's picture
Replies 15
Last reply 2/24/2013 - 11:40am

Hello everyone, 

I'm new here. I had a mole removed from my right forearm on Jan 29 and the path report showed Clark Level 4 malignant melanoma. However, it appeared that all was removed with the shave biopsy. I did go ahead and have a wide resection of my arm and sentinal node removal 2 weeks ago. 

I spoke the the surgeon at length, who said only ONE node took up the dye, and it was the same ONE node that measured on the Geiger counter, so he only removed the one. He said the node looked good. 

Got a call back with my path report Tuesday: After using 4 different stains, the pathologist found a 0.1mm spot in the sentinal node, which he called micrometastisis. I saw an oncologist yesterday, who referred me to Dr. Miner in San Francisco. I see him next week and also have a PET scan scheduled, as well as BRAF testing of my original mole.

The oncologist discussed a lot of options with me: various medications, interfueron therapy, clinical trials. He also mentioned further node removals versus radiation on my armpit. I'm a bit overwhelmed and emotionally drained. I want to be an advocate for myself but feel lost looking at all the options. 

Any words of encouragement or hope would be appreciated. I have 2 kids at home and feel like I've been given a death sentence. To make matters worse, a good friend died of triple negative breast cancer the day I received the news that my path report showed malignant melanoma. So I was under some emotional strain at the outset of this journey. This diagnosis has made it far, far worse. I need HOPE because I'm having trouble here! 

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Hi Everyone,

We have some answers today about my Dad. We're facing a pretty serious situation (brain, bone, lung, muscles, skin). We've opted for very agressive treatment in the form of Temozolomide, Cisplatin, and Vinblastine (CVT). Our goal is to shrink the crap out of this stuff and hold it at bay. Anyone else have experience with this treatment plan? He'll be on a 21 day cycle. This is crazy to me as he has very few symptoms, feels pretty good, and has been playing 18 holes of golf every few days up to today. My Dad is 67 y/o and in very good physical and mental shape. 

Any experience with this treatment would be much appreciated. I haven't been able to find much on the internet. Apparelty Temozolomide is pretty new?

Thanks,

Natasha

We can do this!

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bkinman's picture
Replies 7
Last reply 4/11/2013 - 5:44pm

How long before you started having side effects of Zelboraf?  I started 2 pills 2 times a day today and will work my way up to 4 pills twice a day.

 

Thanks

Becky

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Gene_S's picture
Replies 7
Last reply 2/22/2013 - 3:20pm
Replies by: JerryfromFauq, Anonymous, Tim--MRF, JakeinNY, susanr

 

Exposure to sun 'may help people with cancer survive'
 
Sunbathing warnings may have been too simplistic, say scientists
Sunbathing is known to cause skin cancer – but it may also help people survive when they get it, scientists are reporting.

Two studies published yesterday showed that vitamin D produced by the action of the sun on the skin may help improve survival for patients with skin and bowel cancer.

The bizarre finding suggests that health warnings to avoid the sun have been too simplistic. Some exposure to the sun is necessary for health – it is excessive exposure leading to burning of the skin that does the damage.

A research team from the University of Leeds working with the US National Institutes of Health found a high level of vitamin D – suggestive of high sun exposure – protected patients with malignant melanoma, the deadliest form of skin cancer.

Those with the lowest levels of the vitamin D in their blood at the time of diagnosis were 30 per cent more likely to suffer a recurrence of the disease after treatment than those who had the highest levels.

Patients with the highest levels of the vitamin also had the thinnest tumours at diagnosis. Results of the study, funded by Cancer Research UK and the NIH, are published in the Journal of the National Cancer Institute.

The findings add to the growing body of evidence that boosting levels of vitamin D could protect against a wide range of diseases, or extend survival with them. The gloomy weather and long winter in countries north of 30 degrees latitude, such as the UK, means that a large part of the earth's population is deficient in the vitamin between October and March. The weight of evidence has grown so dramatically that governments around the world are reviewing their recommendations on the minimum recommended limits.

Professor Julia Newton Bishop, of the Leeds Institute of Molecular Medicine, who led the melanoma study, said: "It is common for people to have low levels of vitamin D in many countries. Melanoma patients tend to avoid the sun as sunburn is known to increase the risk of the disease.

"Our results suggest that melanoma patients may need to get vitamin D by eating fatty fish or by taking supplements to ensure they have normal levels."

Professor Newton Bishop warned against excessive use of vitamin D supplements, however. "There is some evidence from other studies that high levels of vitamin D are also harmful. So we should aim for a normal level rather than a very high one."

In the second study, researchers led by Professor Kimmie Ng, from the Dana-Farber Cancer Institute in Boston, US, who followed more than 1,000 bowel cancer patients for nine years, found those with the highest level of vitamin D were half as likely to die from the disease compared with those with the lowest levels. The results are published in the British Journal of Cancer.

Sara Hiom, director of health information at Cancer Research UK, which funded the study, said: "The key is to get the right balance between the amount of time spent in the sun and the levels of vitamin D needed for good health.

"Protection from burning in the sun is still vital. People with lots of moles, red hair, fair skin and a family history of the disease should take extra care as they are more at risk."

Vitamin D: Man-made healer

Vitamin D is the only vitamin that humans make themselves and is essential for the health of skin and bones. It has attracted increasing attention in recent years as its role in preventing cancer and other conditions including heart disease, diabetes and multiple sclerosis, has been revealed. Some experts believe the benefits of the Mediterranean diet may have as much to do with sun as with the regional food. An increasing body of cancer and other medical experts say a healthy intake of vitamin D for people in the UK and northern Europe should be five to 10 times higher than the current recommended blood levels of 200 to 600 International Units a day, depending on age. Others have suggested high levels may not be protective, and could even be dangerous.

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article found at   http://www.independent.co.uk/life-style/health-and-families/health-news/exposure-to-sun-may-help-people-with-cancer-survive-1791166.html

Personal note:  Milk and dairy are very hard on a cancer patients system.  There are better choices for Vitamin D.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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chalknpens's picture
Replies 4
Last reply 3/1/2013 - 12:50pm

Hi - I'm doing fine myself, having had no new melanoma sites discovered at my three month and six month follow up visits. But I have a relative who has had melanoma for several years, beginniing about a decade ago. She now has lymphoma. And in our family, we have what is called a cancer gene, BRCA 2. That gene is linked to many types of cancer, and it raises the likelihood of developing cancer tremendously.

Is anyone else familiar with this gene? And have other people with melanoma later been diagnosed with lymphoma, and are the two cancers related? I've alerted my doctor to the family link to BRCA 2, and we are looking into genetic testing.

I am not perfect, but I am enough.

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