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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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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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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Gene_S's picture
Replies 4
Last reply 2/21/2013 - 4:18pm
Replies by: Gene_S, Beezer

http://www.naturalhealth365.com/natural_healing/cancer-cell.html

 

February 16, 2013 by Jonathan Landsman  
Filed under Natural Cures, Natural Healing

Sat. Feb. 16, 2013 by Blanche Levine

Vitamin D(NaturalHealth365) It’s true – vitamin D kills cancer cells! Best of all, here is a medical report you can’t afford to ignore. Scientists have recently uncovered a so called experimental approach to treating inflammatory breast cancer (IBC), a rare and aggressive form of the disease.

The new approach uses the active form of vitamin D3, calcitriol, which is delivered by quantum dots to IBC tumors. Quantum dots are engineered, miniscule delivery vehicles which can maneuver directly to a tumor site.

New technology uses nature to destroy cancer cells

Our skin can actually manufacture enough levels of calcitriol (vitamin D) in as little as 15 minutes of sunlight per 24 hours.

What will hinder this process is sunscreen and how dark we are, the darker the pigmentation of the skin the more sunlight that is needed. Obesity, also curtails the circulation of vitamin D and age reduces the ability to manufacture vitamin D.

Vitamin D is found in foods, but the human body synthesizes most of this nutrient from sunlight. Since we now get so little in the way of unhindered sunlight, the new approch is to use Quantum dots and engineered light-emitting nanoscale delivery. The study shows that dots can be used to rapidly move high concentrations of calcitriol to targeted tumor sites where cancer cells are located.

They can go through the lymphatic system where the cancer finds its path to spread. So now calcitriol can fight cancer on different fronts. As more studies keep pilling up to support the notion that low vitamin D levels promote breast cancer – pharmaceutical companies are developing altered vitamin D molecules.

Low vitamin D levels could be a death sentence

Breast cancer patients with low levels of vitamin D have more aggressive tumors and poorer outcomes, a new study finds. Experts say the new findings support what many oncologists have long suspected.

“There has been suspicion that vitamin D is related to breast health in some way, although the particular pathway is still unknown,” noted Dr. Laurie Kirstein, a breast surgeon at Beth Israel Medical Center in New York City.

“Many oncologists are already following vitamin D levels in their breast cancer patients, and recommending supplements for low levels,” added Kirstein, who was not involved in the new study.

Researchers Jeremy Bonor, Rachel Schaefer, and Ania Nohe wanted to see if they could deliver high concentrations of vitamin D to tumors in mice using quantum dots. By the way, women with a low level of vitamin D at the time of diagnosis are 94 percent more likely to have their cancer spread and 73 percent less likely to reach the 10 year survival mark.

Nanotechnology works at the molecular level, and quantum dots are tiny light-emitting crystals that can be engineered to seek out a particular disease or type of cell. The quantum dots were used as an experiment with mice. So the advice of the medical experts is don’t run to the doctor for this yet, as it may take years to make this available to the public.

But, sunlight is available now to boost immunity; protect us from colds; the flu and now even cancer. So, let’s be honest, it can’t hurt to add (if needed) a high quality, vitamin D supplement to our daily routine. Help us spread the word – share this article with family and friends.

About the author: Blanche Levine has been a student of natural healing modalities for the last 25 years. She has the privilege of working with some of the greatest minds in natural healing including Naturopaths, scientist and energy healers. Having seen people miraculously heal from all kinds of dis-ease through non-invasive methods, her passion now is to help people become aware of what it takes to be healthy.

Sources:
http://www.eurekalert.org/pub_releases/2013-02/aiop-qdd020113.php
http://health.usnews.com/health-news/family-health/cancer/articles/2011/...
http://www.vitamindcouncil.org/quantum-dots-deliver-vitamin-d-to-tumors-...

SUBSCRIBE TODAY! Click here to join the NaturalNews Inner Circle – a monthly (online) subscription offering exclusive audio interviews, video events, natural health product discounts, free gifts plus much more!

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

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Maereard's picture
Replies 4
Last reply 2/21/2013 - 3:28pm
Replies by: Maereard, Janner

Hello again everyone!
I have more questions as always:-) I had a crazy spot removed in August that was melanoma. My scar looks great and I have not had any bumps or things they told me to look for. That's my good news! I noticed a few nights ago that I have a spot that looks just as ugly and discolored as the first spot growing about four inches above my scar line. I am scheduled to see my dermatologist tomorrow. My questions is if it is melanoma then it would be a second primary, right? If I understand right then that is not as bad as it would be if it was the first one coming back??? So then would it change my stage? I am currently a stage 1 because my first one was only .25mm but if in fact this is another one does that increase my chances that it would be in my lymph nodes:-(? I did not have them biopsied in August since my primary was so small. As always any information you can give me I thank you for in advance;-)!
Beth

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Anonymous's picture
Replies 2
Last reply 2/21/2013 - 12:57pm
Replies by: rdd, Janner

A 20 year old loved one very recently got a dark mole and a tiny one the size of a pin right next to it removed from his finger.  The Pathologist Comments are as follows:

There are nested melanocytes at the junction with focal bridging between rete.  Scattered single cells are at the junction and in the mid-epidermis.  Rare melanocytes are in the granular layer.  Junctional melanocytes have enlarged epithelioid nuclei and coarsely pigmented cytoplasm.  One mitosis seen.  Melanophages surround the dermal vessels.  These features are in keeping with a junctional nevus with atypical features on acral skin.  It extends to a peripheral biopsy edge.  Complete excision is recommended.

The specimen was an irregular portion of tan skin measuring 0.7 x 0.4 x 0.1 cm, margins painted blue.  

Can someone please tell me what all this means.  We are very worried.  The nurse (not the doctor) called us and told us it was just an atypical mole they want to remove fully.  When we had gone to see the dermatologist he didn't want to remove it but we asked for it to be removed as it just didn't look right to us and now we have this pathology report.  

Does this type of diagnosis mean this person is more susceptible to melanoma?  Should we get his other moles checked.  We are a moley family.  How are we going to ensure they get all of it when they excise it.   Please help us understand.  I have been trying to research as much as I can for the last 2 days since we got the report.  Thank you and god bless everyone.  

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Hello again everyone!
I have more questions as always:-) I had a crazy spot removed in August that was melanoma. My scar looks great and I have not had any bumps or things they told me to look for. That's my good news! I noticed a few nights ago that I have a spot that looks just as ugly and discolored as the first spot growing about four inches above my scar line. I am scheduled to see my dermatologist tomorrow. My questions is if it is melanoma then it would be a second primary, right? If I understand right then that is not as bad as it would be if it was the first one coming back??? So then would it change my stage? I am currently a stage 1 because my first one was only .25mm but if in fact this is another one does that increase my chances that it would be in my lymph nodes:-(? I did not have them biopsied in August since my primary was so small. As always any information you can give me I thank you for in advance;-)!
Beth

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thrashter's picture
Replies 2
Last reply 2/20/2013 - 7:33pm
Replies by: thrashter, jag

Have to decide tonight on 4th round. Have (2) un resectable tumors near clavicle and vein. Tumors have not shrunk but have not grown. PET activity has lowered but not gone away. No direct evidence of 4th round extending overall life expectancy. Struggling with decision. Talked to surgeon he is debating doing exploratory surgery to look at where tumors are to see if he can get to them without nicking vein or nerve. Looking to see if any one has had similar experiance and what they did. Thanks

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Mandi0280's picture
Replies 7
Last reply 2/20/2013 - 3:23pm
Replies by: Gene_S, Mandi0280, Anonymous, washoegal

Hello,

 

 Wanting to know what everyone here knows about scan intervals. Since my husband was diagnosed with melanoma in October 2011 I have done a fair amount of research and thought that I knew when scans would be due. Long story kinda short...after diagnosis he done ipi until he couldn't take it anymore. One month of interferon and scans every 3 months. He was 1 year NED as of October 2012. We just had a followup with his oncologist who said we will see you back in August  and did not schedule any scans. This was very shocking to me. I do know in October he told us it was getting harder and harder for him to get scans done for people due to insurance reasons but i'm still a little worried about this. Has anyone else waited this long in between scans after just 1 year NED? This will put my husband at 10 months in between scans

 

Thanks

Mandi

Mandi

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ChrisB's picture
Replies 6
Last reply 2/20/2013 - 2:12pm

 

Ten years ago today I had a CT scan that showed a lesion to my lung advancing me to Stage IV.  My status for the majority of these past ten years has been stable/manageable disease.

While my journey has certainly had its moments of successes and disappointments I have been fortunate in that I am still able to live a somewhat normal life and continue to work full time.  I know that this might not be the average life of a stage IV patient but I’m hoping this post gives at least a glimmer of hopefulness to others.

My heart goes out to all of you, patients and caregivers alike.

Chris

 

Stage IV February 19th, 2003

Manageable Disease since October 1st, 2004

ChrisB~StageIV on MPIP

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Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

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