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
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.

Treesie's picture
Replies 10
Last reply 5/19/2014 - 4:35am

Hi, 

I am a first time poster!  My husband had his first Melanoma removed 8 years ago.  One on his back, below left breast and lower left abdomen.  Nothing else was ever done and margins were considered clear.  We have kept up with Dermatology appointments through the years and had no other instance of melanomas, just pre cancerous moles.  Back in February 2014 he was increasingly becoming short of breath.  An X-ray showed a Mass in his upper right lung and a CT Scan confirmed the tumor.  Infact, the whole upper right lobe was involved.  A PET scan was scheduled and showed 12 Brain leas ions, involvement of the Lymph nodes, Adrenal glands, gall bladder, lining of his stomach and an EGD showed his colon is fully involved as well as multiple subcutaneous melanomas all over his body.  He has gone through 10 rounds of whole brain radiation and lung radiation.  He has had to have a bronchoscopy done due to the lung tumor growing so fast they were afraid it would fully involve his whole right lung.  So therefore they froze some of the tumor to halt the growth before the radiation could start to shrink it.  He was told another Bronch would be necessary in another 30 days.  His oncologist was very optimistic and started him on Ipi.  Stating there had been 10 year survival rates with this.  I am concerned giving my husbands weakened state this is a little overly optimistic.  He has already had to have 3 blood transfusions as well.  He had his first Ipi treatment a week ago.   We were also told by his Doctor that patients develop a "spring" in their step by the third treatment, but this is also when side effects are likely to happen.  At this point my husbands life consists of Bedroom, and chair and Doctor appointments.

 

Sorry this is long but I was hoping to have some input on what I can expect good or bad.  Or, if anyone else has had this much involvement.  It's so hard to see him like this.  Prior to him going downhill he was a runner 3 days a week and now he can't even dress himself!

 

Thanks for letting vent and post!

Teresa

Login or register to post replies.

SamC 23's picture
Replies 1
Last reply 5/19/2014 - 7:37am
Replies by: Fen

Tomorrow I have my consultation with my Thoracic surgeon. I'm interested yet nervous for what will be said to me... I've been keeping busy and try not to worry too much. No reason to get too worked up until the doctors know what exactly is on my lung.

Login or register to post replies.

DUSTILANE's picture
Replies 4
Last reply 5/19/2014 - 8:21am
Replies by: DUSTILANE, Sandy11, Anonymous

My husband has finished his 4 Ippy treatmens.  The scan that were taken the first of the month showed there had been a small decrease in the tumor under his right arm.  Also the spots that had been seen on his lungs on the prior CT scan had decreased from 1 cm & .8 cem to .5 centimeter.

 

This is good news...however, I am not seeing any improvement otherwise in my husband.  He is still tired all the time, sleeps all the time, has no appetite, continues to lose weight and has lost interest in just about everything.  He doesn't want to go anywhere or do anything.

 

Has anyone else experienced this type issue?

 

Any suggestions or ideas?

 

We go back to MDA the 26th of May for the next set of CT scans and a MRI of the tumor under his arm to see if it can possibly be surgically removed now.

 

 

Dustilane

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 5/19/2014 - 8:57am
Replies by: Anonymous

By a News Reporter-Staff News Editor at Cancer Weekly -- In a groundbreaking effort, 3,500 of the country's top high school students will build the world's largest wiki on melanoma research -- and work toward finding that needle in a haystack to cure melanoma (see also National Academy of Future Physicians and Medical Scientists).

The effort is led by www.SaveJordan.org ,which will use crowdsourcing to drive user-generated content related to melanoma cancer research to a wiki site. "The idea is to bypass mainstream medicine and medical research and compile fresh ideas," said Jordan Guernsey, the 29-year-old father of two and Stage IV cancer survivor who is the force behind SaveJordan. …

=====================================

http://www.highbeam.com/doc/1G1-367490442.html

 

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

Login or register to post replies.

Pages