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.

Expand/ Collapse Topic
 
Replies By
View Topic
eturner's picture
Replies 6
Last reply 5/16/2014 - 8:49pm

Hi guys this is my first time posting so here goes... My husband has stage 4 in his bones and lungs. He has been on Mekinist and Tafinar for a little over two months, its really seems to be helping greatly. The problem is for the past week my husband seems "different" as in very moody, angry. I told him that maybe we could talk to his doctor about this and he was very adamant that I was not to talk to the doctor about his moods, Needless to say I'm very worried. He wants very much for these drugs to work well and for as long as possible, my fear is that he will not tell me when he thinks it is no longer working as his cancer is aggressive when not being treated. Does anyone have any advice or input as to what is going on (is it side effects or could it be the cancer)??!!

Login or register to post replies.

mezerova's picture
Replies 2
Last reply 5/16/2014 - 9:53pm
Replies by: BrianP, heiditemple

Has anyone suffered severe headaches after taking Yervoy?

Mezerova

Login or register to post replies.

tcell's picture
Replies 1
Last reply 5/16/2014 - 11:18pm
Replies by: G-Samsa

Hi all,

I have heard about new antibodies that could probably become the next generation after Anti-Pd1. Phase 1 trials seem to be underway or starting.

Anti-GITR
http://clinicaltrials.gov/ct2/show/NCT01239134?term=gitr&rank=2

Anti-LAG3:
http://clinicaltrials.gov/ct2/show/NCT01968109?term=anti+lag3&rank=2

Q: Is there anybody who knows more about that topic than I do? Anybody in the Anti-GITR trial or having those trials on their list as promising options?

Just asking as it seems to me that everybody still is in Anti-PD1 fever which is great but still I am hoping that reponse and survival rates will improve with every new generation of antibodies and their combinations!

 

Login or register to post replies.

By Deane Alban

Posted Thursday, May 15, 2014 at 12:34pm EDT

Keywords: sun exposurevitamin dvitamin d deficiency

Now that the warmer weather is here you can get outside and replenish your much-needed stores of vitamin D, the sunshine vitamin.

“20 minutes twice a week” is the usual rule of thumb for getting enough sun to keep your vitamin D levels up. But in real life it’s much more complicated than that. We’ll examine some of the surprising reasons this is so.

But first let’s take a look at why vitamin D is critical to your health.

Vitamin D — What’s It Good For?

Vitamin D is technically not a vitamin, it’s a pre-hormone that’s created when your skin is exposed to sunlight. It’s the only human nutrient that’s created from sunlight. Just like a plant. ;-)

Vitamin D is close to being nature’s cure-all. It’s a fantastic immune system booster. It’s been found to be protective against cancer, diabetes, heart disease, high blood pressure, osteoporosis, and Alzheimer’s.

Studies have shown it can lift your mood, banish depression, improve memory, and increase problem-solving ability. Inadequate levels may contribute to the blues many people feel in the winter.

Surprising Factors Affect Vitamin D Formation

It’s estimated that 80-90% of adults in North America are vitamin D deficient. Here are five surprising factors that affect your ability to manufacture vitamin D.

1. Sunscreen

If you are outside in the sun but wearing sunscreen, you won’t manufacture much vitamin D. I live in the land of perpetual sunshine – southern Arizona – and am outside a lot. So I was shocked to learn I was seriously vitamin D deficient! I know now that’s because I wore sunscreen most of the time.

2. Latitude

If you live in the US draw a line from Los Angeles to Atlanta. If you live north of this line, the sun’s rays are too weak to trigger vitamin D production most of the year except during the summer.

Time for some fun science! Here’s a way to tell if the sun’s rays are strong enough to stimulate vitamin D formation:

Go outside, stand in the sun, and look at your shadow. The more direct the sun’s rays are, the shorter your shadow will be. A good rule of thumb is that if your shadow is your height or longer, the sun’s rays strike at too great an angle to promote vitamin D formation.

3. Skin Color

Our different skin tones evolved depending on how much sunshine our ancestors were exposed to. Light-skinned people from very northern areas evolved to utilize sunshine more efficiently. If you have dark skin, you need even more sun exposure to get adequate exposure levels, up to one hour a day.

4. UV Index

Just because the sun is shining and you’re in it, doesn’t mean you’re producing vitamin D! UV index is affected by season, time of day, cloud cover, air pollution, altitude, and even your surrounding surface. Whether you’re outside in the snow, at the beach, or picnicking on a lawn can affect how much UV radiation is reflected back at you by up to 40 fold.

It is only when the UV index is greater than 3 that the needed UVB wavelengths are present in sufficient amounts. Check a site like Weather.com to find your current local UV index before you take your next vitamin D “sun bath”. There are also some apps that report your local UV index.

5. Bathing

It takes up to 48 hours for your skin to fully absorb all of the vitamin D it makes in the sunshine. About 50% of the total formation occurs within the first few hours so try to hold off showering at least until then. Otherwise your new vitamin D will literally go down the drain.

Here’s a link to a calculator that takes most of these factors – latitude, skin color, altitude, sky conditions and such – into account. It estimates how many minutes of sun exposure you need to produce 25 mcg (the equivalent of 1,000 International Units) of vitamin D. You might not know your latitude and altitude off the top of your head but you can google it.

Know Your Levels, Supplement Accordingly

Vitamin D deficiency symptoms — muscle pain, weak bones, low energy, lowered immunity, depression, mood swings, and sleep problems — can be mistaken for many other health problems.

The only way to know for sure if you need vitamin D supplementation is to have a blood test to check your 25-hydroxy level. You can see your doctor or you can order a vitamin D test onlineOnline self-testing is a great way to save money, retain your privacy, and have more control over your health.

If your level is found to be low and you can’t get enough sun exposure, you need to supplement.

There are five forms of vitamin D – D1 through D5. Most experts agree the most effective form is D3.

Some foods, like milk, are fortified with the D2 form and mushrooms naturally contain D2, but this form is not very well utilized.

By far the best “food source” of D3 is cod liver oil. Not that most of us would call this “food”!  Fatty fish like salmon and sardines contain some D3, but not nearly as much.

When you choose a vitamin D supplement be sure to buy from a company you can trust. Last year a study on 55 brands of vitamin D supplements found they contained between 9% – 146% of what was listed on the label!

For most of the country, sunbathing days will soon be here. Keep these tips in mind to benefit from the sun exposure you receive. Remember the “20 minutes twice a week” rule of thumb rarely holds true. If you suspect you’re deficient get tested to know for sure.

ABOUT THE AUTHOR:

Deane Alban holds a bachelor’s degree in biology and has taught and written on a wide variety of natural health topics for over 20 years. She teaches the best ways to stay mentally sharp for life at her website BeBrainFit.com. Learn how to protect your brain and optimize your brainpower – sign up for her free e-course 21 Days to a Brighter Brain here.

 

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

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 5/17/2014 - 3:01pm

Anyone go surgical route alone and get long term success (say, 5 years NED)? If you went surgical only route, what has been your experience?

I'm stage III - now NED for a week now after surgery. Since there are so many promissing treatments coming down the pipeline, I'm considering making a gamble and waiting for a few years until better treatments are more available. How big of a gamble would this be?

Statistically speaking, what how long does it take for the melanoma to return?

Login or register to post replies.

sbrooks90's picture
Replies 5
Last reply 5/17/2014 - 11:29pm

Hello Everyone,

Just checking in to share some good news... I have been NED since having a CLND in September 2013 and feeling great! A big thank you goes out to everyone on this form who takes their time to reply and give good advice to people.

Take care for now!

Samuel

Login or register to post replies.

BarbieGirl's picture
Replies 29
Last reply 5/17/2014 - 11:38pm

Diagnosed on my 39th birthday (in October), and had the wide-excision on Dec. 8, 2000.  There was melanoma in-situ found, but the doc got the margins.  (I would have preferred NOT to have had any mel show up in the WLE, but that's the purpose of it!) 

Never, ever, ever did I believe I'd still be alive and kicking today.  I didn't change a thing, other than appreciating life better and not taking things for granted.  I eat what I want, I like a little coffee with my sugar and cream, I'm a coke-a-holic (the kind you drink, not snort!),  I smoke, take lots of meds, get very little exercise----you know, all the BAD things.  Figured if I was gonna die, I was at least gonna enjoy my time left.

The only thing I asked God for.... was to let me live long enough that my grandkids would remember me.  They're now 4-3/4, 5-1/2, 9-1/2 and 11-1/2. (You know how important those halves and quarters are with kids ages!! haha!)  Thank you, God, for allowing me to still be around!

Guess I'll be around to annoy ya'll a bit longer!! =)

*hugz* and love to all who have followed my decade-long journey!!

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

Login or register to post replies.

mike_nj's picture
Replies 29
Last reply 5/18/2014 - 12:53am

Just wanted to post that my yearly scan was clear and now almost 9 years out since progressing back in August of 2004.  Blood tests will be done next week.

Lately, I have been reduced to chest X-rays on an annual basis, after going through all the frequent Ct & PET scans in the early years.

I had my recurrence from a stage 1A lesion on my right upper arm in 2004 after a 5 year interval, and then had 17 nodes removed from my right axilla with 1 macro sized positive node, followed by 5 doses of radiation, followed by 10 shots of the mel43 vaccine in a clinical phase 2 trial developed at UVA.  I started a supplement in 2004 regiment that I pretty much keep up every day with mostly items from the Vitamin Shoppe.  Lymphedema developed in my right arm and I wear a compression sleeve and sometimes I use the FlexiTouch masage machine but my arm garment is pretty much ruined from wear.

 Very few stage 1A lesions recur overall, so I just accepted the "bad luck" as my surgeon pointed out, and moved on.

So, I am thankful to God for this grace period in this stage 3B holding pattern, and I pray for the well being of all fellow patients here and their caregivers

I hope this post gives some new patients some added hope.  Since my recurrence, I see that treatment for melanoma have been changed very rapidly and I pray that more good choices for adjuvant therapy become available to patients that have a higher risk of recurrence and that the treatments for stage 4 melanoma can halt or fully eradicate this disease.

Login or register to post replies.

My mother was diagnosed with Stage III Mestatic Melanoma last April (2013).  It was originally found in her lymph nodes in her upper right groin area.  They removed 4 lymph nodes from this area last April.  She had 5 radiation treatments following this surgery.  She was then accepted into the Yervoy Clinical trail at the 3mg level.  She started those infusions at the end of last summer but was only able to have 4 of them; the last one was administered at the end of last October.  Her doctor stopped her Yervoy treatments due to the severe joint pain she developed; it was debilating.  She has also experienced severe itching.  She has been on Prednisone since November, starting with a strong dose, down to a maintenance dose now.  Fortunately she never experienced any colitis or digestive issues, but had 1 mass removed from her right breast last October and another one in the same area this past March.  She now has a 2+ inch spot on her liver she will have vascular surgery on in the upcoming weeks.

When she is not on the Prednisone the joint pain and itching returns.

Has anyone else suffered the debilitating joint pain from this treatment, and if so, how long did it last, did it eventaully go away once the Yervoy was out?  She is terrified it will effect her for the rest of her life. 

Thank you!

Login or register to post replies.

tonydetroit's picture
Replies 2
Last reply 5/18/2014 - 10:46am
Replies by: melanomafighter, Janner

Hi everyone -

I just had my first skin check in many years (31 y/o, male with a fair number of moles).  I've never been a sun god, but I've had a few runins with sunburn.

First the good news, a leison on my arm I was concerned about turned out to simply be a sore of unknown origins.  

The not-so-bad news: During the visit, the PA had decided to biopsy another mole on my back which was darker than the others.  Biopsy results showed it was mildly atypical.  

The easy question:

Derm's office has now requested that since shave biopsy was used for both, the mildly atypical area should be fully excised so that it never is able to "become a problem".  However, I'm reading online that full excision is not always recommended if the mole was mildly atypical...  does anyone have anything to share on that?

The worry:

About a month and a half ago I noticed a bump on my right shin (left side between the front and back portions).  Not a huge bump, but noticeable.  During my Derm visit, the PA never mentioned the bump even though he inspected that area and the speed of the entire check up had me more focused on the the word "biopsy" (first timer here) than to notify him about the bump.  Over the week I waited for the generally good news from the biopsy results, I began to of course google my nights away looking at pictures and generally convincing myself I was en route to Melanoma.

This leads me back to the bump... subconsiously I began a few nights back to press the bump and found that I could press it downward... however... (and keep in mind this was while I was in a dark room late at night after I should have been sleeping) I pressed the bump and it seemed to burst and flatten... I felt some liquidy substance briefly.  Now the bump is generally flat and looks more like a small open sore.  

The big question:

Is it possible to 'press' Nodular Melanoma until it bursts and flattens?  Could 'pressing' down on the bump be pushing Melanoma deeper, even though the bump area is not mainly flat? The bump area has started to heal (I keep wanting to touch it though to ensure it's still mainly flat and not elevated, which probably isn't helping the healing process)... 

Lasty:

I just want to commend the brave people on this forum.  Of all the scary anxiety that has filled my last two weeks (I feel like I'm a few years older)... you all have proven the internet doesn't have to be a scary place.  

Thank you for taking my concern seriously.  

-A

 

 

Login or register to post replies.

melanomafighter's picture
Replies 7
Last reply 5/18/2014 - 12:48pm

Hello  Just wanted to share some good news, I have been NED for another year,  CT scan came back clear of Melanoma and still no sign of it.

It gives me great joy to post this, when I was first diagnosed I was not sure how it will all play out, seems since my surgery of removal 4-2010, the

Drs are pleased to not be able to find it anywhere almost two years later.  Thanks to all of you who post your updates, fears and joys on this board.

I still come in here at least twice a month and see how everyone is doing.

Remember what's important and make everyday count

Login or register to post replies.

Replies by: Gene_S, Linny, DZnDef, Anonymous, washoegal

http://www.medscape.com/viewarticle/824462
Improved Survival in Cancer Patients With High Vitamin D Levels

Pam HarrisonMay 01, 2014

Researchers have again found that higher levels of circulating vitamin D on diagnosis of cancer are associated with significantly better survival and remission rates. The new findings come from a comprehensive meta-analysis involving more than 17,000 cancer patients, published online in the April 29 issue of the Journal of Clinical Endocrinology and Metabolism.

Mian Li, PhD, graduate student, University of the Chinese Academy of Sciences, Shanghai, China, and multicenter colleagues found that overall survival for colorectal and breast cancer patients in the highest quartile of circulating 25-hydroxyvitamin D [25(OH)D] levels was significantly better than it was for those in the lowest quartile of 25(OH)D levels.

Overall survival was also significantly better for lymphoma patients in the highest 25(OH)D quartile compared with those in the lowest quartile.

Higher circulating levels of vitamin D were also significantly associated with lower cancer-specific mortality rates among patients with both colorectal cancer and lymphoma, and disease-free survival rates were also significantly improved for patients with breast cancer and those with lymphoma.

"This study could be considered as the most confirmatory evidence to date supporting an association between circulating 25(OH)D levels and cancer outcomes," senior author Hui Wang, MD, PhD, professor at the Institute for Nutritional Sciences, Chinese Academy of Sciences, told Medscape Medical News.

"Considering that vitamin D deficiency is widespread around the world, our suggestion is to ensure everyone has sufficient levels of this important nutrient — that is, circulating 25(OH)D levels — greater than 75 nmol/L."

Robust Evidence

For the meta-analysis, the authors included 25 studies involving a total of 17,732 patients with cancer.

The evidence supporting a protective effect from high circulating 25(OH)D levels on diagnosis was most robust for colorectal cancer, breast cancer, and lymphoma.

Table. Cancer Outcomes Between Those in the Highest vs the Lowest 25(OH)D Quintiles

 
Overall Survival [Highest vs Lowest 25(OH)D Quintiles]
Cancer-Specific Mortality [Highest vs Lowest 25(OH)D Quintiles]
Disease-Free Survival [Highest vs Lowest 25(OH)D Quintiles]

Colorectal cancer
45% reduction (HR = .55; P = .02)
35% reduction (HR = .65; P = .005)
 

Breast cancer
37% reduction (HR = .63; P < .001)
35% reduction (HR = .65; P = .04)
58% improvement (HR = .42; P < .001)

Lymphoma
52% reduction (HR = .48; P < .001)
50% reduction (HR = .50; P < .001)
 

HR, hazard ratio

 

Limited — but favorable — evidence for a protective effect from high circulating 25(OH)D levels on diagnosis was also observed for patients with lung cancer, gastric cancer, prostate cancer, leukemia, melanoma, and Merkel cell carcinoma.

Indeed, when investigators compared 25(OH)D levels in the range of 40 to 70 nmol/L to levels <19 nmol/L, they found that a 10-nmol/L increase in circulating vitamin D levels upon cancer diagnosis was associated with a 4% reduction in all-cause mortality among all cancer patients in whom a dose-response relationship was assessed.

Chemopreventive Agent

As Dr. Wang told Medscape Medical News, researchers tend to consider vitamin D as a cancer chemopreventive agent.

"A lot of laboratory studies have suggested that vitamin D might inhibit the progression of cancers by acting on tumor cells and modulating the tumor microenvironment," he explained.

In addition, the biological effects of vitamin D on both bone health and the immune system may help cancer patients better weather difficult treatment regimens and help alleviate adverse reactions.

More Aggressive Prostate Cancer

In a separate study published in Clinical Cancer Research, vitamin D deficiency was associated with more aggressive prostate cancer in both European American and African American men. These men were undergoing their first biopsy because of an abnormal prostate-specific antigen (PSA) or digital rectal examination (DRE) test.

Results showed that a 25(OH)D level of <12 ng/ml was positively associated with a higher Gleason grade (≥ 4 + 4) and a higher clinical stage (tumor stage ≥ cT2b) in both groups of men but that the association between more aggressive prostate cancer and vitamin D deficiency was stronger among African Americans.

This study also found an association between lower 25(OH)D levels and men at high and very high risk for prostate cancer according to National Comprehensive Cancer Network (NCCN) criteria.

"In our study, vitamin D deficiency seemed to be a predictor of aggressive forms of prostate cancer diagnosis in European American and African American men," lead author Adam B. Murphy, MD, assistant professor in the Department of Urology at the Northwestern University Feinberg School of Medicine in Chicago, commented in a statement.

"The stronger associations in African American men imply that vitamin D deficiency is a bigger contributor to prostate cancer in African American men compared with European American men," Dr. Murphy added. "Vitamin D supplementation may be a relevant strategy for preventing prostate cancer incidence and/or tumor progression in prostate cancer patients," he suggested.

The study by Dr. Li and colleagues was supported by a number of grants, including a grant from the Ministry of Science and Technology of China, the National Nature Science Foundation, and the Science and Technology Commission of Shanghai Municipality. The study by Dr. Murphy and colleagues was funded by the National Institutes of Health and the US Department of Defense. The authors of both studies have disclosed no relevant financial relationships.

Clin Endocrinol Metab. Published online April 29, 2014. Abstract

Clin Cancer Res. 2014;20:2289-2299.

 

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

Login or register to post replies.

SteveDB's picture
Replies 12
Last reply 5/19/2014 - 12:20am

Today is February 9, 2014. 

On February 10, 2004, I had my most recent (what wound up being the last so far) of 6 cancer surgeries. When I woke up  later that afternoon, I found that my arms and hands were numb and tingly. My wife explained to me that while on the surgery table, my iliac artery exploded due to the cancer which had so compromised the arterial wall that it could not take the pressure. 
When the surgeon came in the next morning, he explained to me what had happened. He was finished working on the tumor which had wrapped around the iliac vein, and was ready to tackle the part of the tumor which had wrapped around the iliac artery. When he touched the scalpel to the artery wall, it exploded. He continued on, telling me if not for the quick response from his partner, I would've bled out on the table. He said that I lost 1250 cc's of blood. 
According to Melanoma protocols, the standard procedures for cancer diagnostic scans, and follow up, the first 24 months following an occurrence, or recurrence, the patient is observed closely every 3 months. If the patient reaches the 25-60 month mark, they are observed once every 6 months. Once they hit the five year mark, they are observed annually out to the 10th year. 

If they reach the ten year mark, two things occur.
1- if there is no recurrence, aka "NED (no evidence of disease)", they are considered cured. 
2- the time between appointments for ongoing is decreased to once every 5 years. 

As of this point, I am cancer free. 
I am acutely aware of the precarious and uncertain nature of this disease. 
I cannot tell you how many friends and family members, and acquaintances have lived for only days, to months, to even a few years with their cancer, gone into remission, and had their cancer return with a vengeance, killing them swiftly. 

All that aside..... according to Medical science, I am now considered "cured", and will now only see my oncologist every 5 years, probably get PET scans, or at least blood tests. 

I am presently about as ecstatic as I can be, because while my life is still in a precarious state-- the intensity is feeling lifted. I suppose the title of the movie-- Waiting to Exhale-- applies here as an expression of how I've felt. I.e., I can exhale now. 
 

I'm posting this as an update. I was here last on September 13-14, 2013. I was excited then, and even more so today. 
I hope that all of you hold on to the Hope that God, in Jesus, gives. 
I saw an article yesterday, from Noetic.org. It was on unexpected remissions, and published back in 2011. 
I don't want to give false hope, because I believe the only real, lasting hope is found in Jesus Christ. I.e., even if we do die, we immediately enter God's Kingdom, and are in paradise for an eternity (2 Cor. 5:3-8). I do however want to say-- there is Hope. 
So....
Hi. I am still alive. 10 years since last reccurence, 26-1/2 years since onset, 16-3/4 years since diagnosis. 
One heartbeat at a time.

Login or register to post replies.

brandimhs's picture
Replies 7
Last reply 5/19/2014 - 1:35am

My 8 year old was diagnosed in December of 2012 with stage 3B melanoma. Has anyone else experienced melanoma in children?

Brandi (Ashtons Mom)

Login or register to post replies.

My husband was diagnosed with stage 4 melanoma 2/27/2014 when his horrible back pain proved to be a tumor on his spine, with active cells in brain and lungs.  At 6 ft and 160 lbs, he has always been a health nut, eating right and daily trips to the gym.  After two separate week long hospital stays for pain management with concurrent radiation treatments he has dropped to 122 lbs.  With so little fat, the loss is muscle and he can walk only short distances with his walker.  Has anyone out there come back from a weight loss like his?  If so, please tell us how.

Login or register to post replies.

Pages