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
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.

ray39's picture
Replies 6
Last reply 5/19/2014 - 10:12am
Replies by: ray39, Anonymous, Kim K

The more I read my path report the most questions I have, so here is the complete report:

 

Cooment:Lateral and deep edges are positive for neoplasm.  The histologicdifferetial diagnosis may include a compound dysplastic melanocytic nevus with severe atypia, however, an early melanoma (0.4 mm in depth) cannot be excluded in these sections.  Re excision is suggested in order to perform additional histologic analysis and ensure the prolifieration has been removed moved from the patient.

 

I had the wide excision Tuesday and been reading this over and over and l\lateral and deep edges being positive for neoplasm is freaking me out.  The doctor said this was a "soft call" of no melanoma but they they wanted to treat it like an early melanoma?

 

Thoughts??

Login or register to post replies.

Short review:

husband 

July 2010 dysplastic nevi left calf

derm exams every 6 months

July 2013 bump lower left calf and enlarged left groin lymph node

August 2013 diagnosed stage 3c, groin lymphadenectomy 

October 2013 - December 2013 ipi Tx 4 cycles total (colitis treated with prednisone and 2 doses remicade)

Ringing in ears. brain MRI clear. February 2014

CT clear jan 2014

April 2014 PET show high SUVs calf , groin and stomach 

April 2014 Endoscopy with biopsy reveals 3.5 cm lesion in stomach that is melanoma

Meet with teams at mskcc and penn. Decide on BMS anti-pd1 and KIR trial.  To be begin this weds may 21st

My Question?

if husband fails trial, would he be eligible for expanded access MK3475? If you were ever on a Merck 3475 trial that would exclude you but would a BMS trial exclude you?

Lastly, when do you think the FDA will approved Anti pd 1?

 

thanks in advance. Anxious to get treatment moving but don't want to make the wrong move. 

 

 

Login or register to post replies.

SamC 23's picture
Replies 8
Last reply 5/19/2014 - 10:14pm

Hello everyone,

I was diagnosed with Melanoma back in March 2011. Surgery was performed to remove it from my back along with a sentinel node from my right armpit.

I 've had two CT scans in two months. The first one indicated a nodule on the lower left lung measuring 15x11. Second scan showed it grew to 28x14. I'm a little nervous for what is about to happen in the next few weeks.... Thank you 

Login or register to post replies.

ErikaHouston2's picture
Replies 4
Last reply 5/19/2014 - 11:45pm

I was just recently diagnosed with Crohn's disease. Curious if anyone else here has experience with both melanoma and crohn's or IBD? My melanoma was early (Stage I, .65MM), but the treatments for the Crohn's disease do concern me since they are all immune system suppressing (steroids, Humira, Remicade, etc). 

Some of you may recall MD Anderson running a bunch of tests as they were concerned that my two severe GI bleeds (hospitalized/transfused) were somehow melanoma related. While Crohn's is not a peach, I'll take this diagnosis over melanoma metastisis any day.  It was very nice to have MD Anderson tell me they wouldn't treat me for this :-).

My Crohn's GI specialist is aware of my melanoma history and the complications for treatment of the Crohn's. She has started me on a mild steroid - Entocort.

 

Login or register to post replies.

Pages