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.

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HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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Colleen66's picture
Replies 13
Last reply 2/23/2013 - 2:34am
Replies by: JerryfromFauq, Gene_S, Anonymous, Colleen66, POW, Fen

I'm down in Florida for a much needed break.  Yesterday, I was walking my two miles on the beach.  I had on a bottle of sunscreen, red shorts and my Melanoma Warrior tank top.  I passed many many people on the beach, almost all with severe tans.  They would glance at my shirt and than away.  Not one person I saw would look me in the eye!   Just the day before that during my walk there were "good mornings", "beautiful day" etc. and tons of smiles and eye contact.

I was really disturbed by this and I don't understand why was treated the two different ways.  Has anyone had this type of experience before?  I had actually hoped someone would approach me and maybe ask questions or something.  Gosh, what was I thinking.

Colleen 

Live!

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Anonymous's picture
Replies 10
Last reply 2/23/2013 - 1:08am
Replies by: JerryfromFauq, Anonymous, deardad, Janner, Carole K

This has bothered me and would like to know if I am the only one.  I just find it so frustrating.....that when I talk to people about melanoma they think the "ABCD's " of melanoma is " Gold Standard " in melanoma detection.  I have become very educated about melanoma..just like many of you on this forum.  I feel this way esp. since I lost my 45 y/o  brother to this cancer just a few months ago.  I myself have been to the doctors for biopsies because I have had basal cell in the past.  I have had some strange moles removed but because of my wishes...not their recommendations.  So many people I speak with don't understand all the places melanoma can" pop up "....mouth, sinuses, eye, rectum, vagina, feet, toes, nails, scalp, and nasal cavity.   Also, melanoma does not have to be a " colored mole", you can have amelanotic melanoma.   Another thing is how people don't take melanoma seriously.  It is an evil, aggressive, devious, and intelligent  cancer, and there is limited treatment options...not like say thyroid cancer.  When they here the stats on chemo and the presentation......I get the deer in the headlight look...and this look comes from some doctors that I know.  I feel that many times we are behind the eight ball on melanoma....I know first hand with my brother.  I guess what I am trying to say is that in my opinion, the true facts about melanoma are not broadcasted enough.  How come I and others had to find out the hard way about melanoma by losing a loved one or currently fighting this demon.  I know the medical professionals cannot detect everything.  Melanoma only needs a few months to mark its destruction in the body.  I know its not everyday that a doctor can see inside the body to detect a tiny spot that could be melanoma.  Also, many medical professionals....doctors, pathologists say " stage I "  " your cured " "don't worry"....HA !!!!!  I see to many stage I friends on this forum who are now stage 4.....Nothing is a 100% in cancer detection but maybe better education can help or I am open to ideas.  I could not save my brother but maybe his 4 small kids, my children, or someone else.................

 

Thanks for Listening

Sam.

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NatashaBishop's picture
Replies 6
Last reply 2/23/2013 - 12:59am

Hi Everyone, I've been looking for a support forum for a few weeks now. I'm glad I found you guys!

Around the first of the year my Dad's scans came back dirty after 4 years of NED. We're talking brain mets, adrenal glands, lung, muscle, perhaps spleen as well. My Dad completed WBR towards the end of January and we have an apointment at MD Anderson on Thrusday (Feb 21st) to see if they can help us out with any form of treatment. My Mom was an oncology nurse for several years and went through all of his scans on Sunday night. She told me that it is stage IV and we're looking at a very serious situation in which treatment will hopefully buy us some more time together but remission is highly unlikely and there is no cure. That's a lot of information to take in all at once. My Dad is 67 years old and my hero. I have three older half-sisters but we aren't in eachother's lives and I was basically raised an only child. I'm also in Los Angeles and my parents are in Florida so the distance is killing me right now. Needless to say, this is my worst nightmare and I don't really have too many friends/family members to lean on. I'm curious how everyone manages the stress, fear, anxiety, and everything else that comes up throughout this journey. I'm having panic attacks, crying at the drop of the hat, fuzzy brain, the whole 9 yards. Of course, when I talk to my parents I mask this because they have so much on their plates as well. Any advice or stories of hope would be much appreciated!

Thanks :-)

Natasha

We can do this!

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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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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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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.

----------------------- -------------------------------------------------------------

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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MegsEggs's picture
Replies 2
Last reply 2/22/2013 - 2:13am
Replies by: Cynthia C, Janner

Hi. My name is Megan and my father was diagnosed with melanoma. I do not think my mother is being honest with me. My dad was diagnosed early February. A little history...my dad is 84 years old and a stroke survivor. The first stroke happened 15 years ago and left him with out speech and very limited use of his right side. About 4 months ago he had a growth on his arm that his caregiver and my mom thought was a bed sore. The tried to treat it with compresses but it didn't work. Over 4 months it grew, almost tripled in size. It also started to puss and bleed heavily and regularly. The doctor removed it and sent it for biopsy. It came back as melanoma. Here's the thing. All my mom keeps telling me is that melanoma is the slowest growing cancer that there is and she has known people with melanoma and it's no big deal. That's after she tried to tell me that melanoma is non-malignant. So you can understand my doubt in what she says. So all I really know is how fast it grew before it was removed and what I have read on the Internet which is very different from what my mom is telling me. I feel very in the dark. I guess I am looking for a little insight into whether or not it could be as simple as removing the melanoma and it being gone. Any thoughts would be very appreciated.

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Mickey n Jo's picture
Replies 3
Last reply 2/21/2013 - 10:24pm

My husbands Pet/Ct results from Thursday, Feb. 14 were not what we were hoping for.  The majority of hypermetabolic soft tissue nodules and lymph nodes have increased slightly in size, but the intensity of the hypermetabolic activity has not changed.  Also multiple small enhancing lesions in the brain have been detected which are highly suspicious for brain mets. He is having a brain MRI on Friday, Feb. 22.  His melanoma specialist recommends staying on Zel, 3 and 3, until we get the results of the MRI. She feels that Zel is still keeping mets in his body in check for now.  Depending on the results of the MRI, the next step will probably be radiation. I'm not sure if that means WBR or Gamma Knife. I thought that Gamma Knife wouldn't be an option for multiple lesions. Is that correct or not? Forgive me, but I'm a little confused and upset right now. Trying to keep a PMA, but sometimes it's really hard. Any info you could give us would be greatly appreciated. We value your input a lot.

                                Thanks,

                                    Jo

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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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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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Carole K's picture
Replies 2
Last reply 2/21/2013 - 6:26pm
Replies by: Carole K, BarbieGirl

HI Everyone,

I will be in chat and hopeftully others as well,.  Come join us.

Love and lIght

Carole

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DeniseK's picture
Replies 5
Last reply 2/21/2013 - 5:22pm
Replies by: JakeinNY, Owl, Brendan, POW, bikerwife

Hello Everyone,

I got the report back from my Brain MRI that I had done last Friday.  

It says it's decreased from 2.3cm to 8mm, decreased associated T2 hyperintensity and no new mass or abnormal enhancement.

So the MRI looks good.  Not sure if it's from the WBR or Zelboraf, I'm meeting with the Radiologist Onc tomorrow so I supposed he'll be able to tell me.

The PET Scan results aren't in yet but I'm getting pretty good at seeing the spots that light up.  As I suspected I'm lighting up on my right side either my stomache or gallbladder.  I've been having pain under my right ribs so I suspected something was going on.  The previous tumors have shrunk significantly but not sure how much until the report comes back.  I'm not having any bad side effects except my ears hurt from the WBR and they still haven't popped.  I'm also having severe nausea.  Having trouble eating and keeping it down.  Seems like I"m constantly nauseated, I'm wondering if it's from the WBR or the Z or the gallbladder/stomache tumor??  

Has anyone else had gallbladder tumor and what were your symptoms?  Did you have surgery?  

Thanks

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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