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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Nigel Deacon's picture
Replies 4
Last reply 9/5/2013 - 7:07pm
Replies by: Tamils, POW, Zan

ocular melanoma June 2010, brachytherapy July 2010, mets to abdominal lymph nodes March 2012

ipilimumab Sept/Nov 2012, radiation March/Apr 2013, partial response by April 2012 but progressin in July.

I am about to retreat with ipilimumab, and hopefully stereotactiic radiation. How can I learn about best sequence, number of treatments, best practice in timing please?  Who are the experts?

 

Kathleen, if you are out there, could you please ask Dr. Flaherty for me?   Peace,Nigel

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Anonymous's picture
Replies 2
Last reply 9/5/2013 - 8:13am
Replies by: JillK, lou2

and increase in diagnosis for men and women. . . . .

 

MONDAY, Jan. 7 (HealthDay News) -- Deaths from cancer continue to drop for American men and women from most racial and ethnic groups, according to a new report, with significant declines seen for lung, colorectal, breast, prostate and other forms of cancer.

"This is good news in that there is continuation of the decline in the overall cancer death rate," said Edgar Simard, a senior epidemiologist in the surveillance research program at the American Cancer Society. "The progress we are making in the fight against cancer is largely driven by the most common cancers in America."

Simard noted that the drop in deaths from lung cancer was in great part the result of fewer people smoking and better treatment. For colorectal and breast cancers, the decline in deaths also resulted from improved screening and treatment.

Not all the news from the report was good. Among men, death rates from melanoma skin cancer are on the rise and uterine cancer death rates are up for women. Death rates for liver and pancreatic cancer are also increasing.

For these diseases, treatment needs to get better if deaths are going to be reduced, Simard said. "We would like to have more research and more public attention to these cancers," he said.

The annual report was produced by researchers from the U.S. Centers for Disease Control and Prevention, the American Cancer Society, the U.S. National Cancer Institute and the North American Association of Central Cancer Registries.

"Our efforts in cancer prevention and control are working," said Jane Henley, an epidemiologist in the division of cancer prevention and control at the CDC.

Henley said cancer diagnosis and deaths could be further reduced if people would live up to their New Year's resolutions to quit smoking, lose weight, eat healthy, exercise and cut down on drinking.

The drop in cancer deaths began in the 1990s and continued as screening and treatments improved.

From 2000 through 2009, cancer deaths dropped 1.8 percent per year among men and 1.4 percent per year among women. Deaths among children also dropped by 1.8 percent per year, according to the report.

During that time period, cancer deaths for men dropped for 10 of the 17 most common cancers: lung, prostate, colorectal, leukemia, non-Hodgkin lymphoma, kidney, stomach, myeloma (a type of blood cancer), oral and tracheal cancer.

Among women, cancer deaths dropped for these common cancers: lung, breast, colorectal, ovarian, leukemia, non-Hodgkin lymphoma, brain and other nervous system cancers, myeloma, kidney, stomach, cervix, bladder, esophagus, oral, tracheal and gallbladder cancer.

In addition, from 2000 to 2009, diagnoses of new cancers dropped 0.6 percent among men and were unchanged among women.

For children, however, cancer diagnosis rose 0.6 percent, the researchers say.

For men, the drop in cancer diagnosis was seen for prostate, lung, colorectal, stomach and larynx cancers, but increased for kidney, pancreas, liver, thyroid, melanoma and myeloma.

Among women, the reduction in cancer diagnosis was seen for lung, colorectal, bladder, cervical, pharynx, ovarian, and stomach cancers, but rose for thyroid, melanoma, kidney, pancreas, leukemia, liver and uterine cancer.

For breast cancer in women and non-Hodgkin lymphoma in men and women, the rates of new diagnosis remained the same, the researchers noted.

Simard believes more progress will be made. "The future is bright as long as we continue to apply what we know about cancer prevention, control and treatment," he said.

CDC's Henley added that people can help prevent cervical cancer and cancers of the mouth by making sure young girls and boys get vaccinated against the human papillomavirus (HPV).

Right now, only 32 percent of girls have gotten the full treatment for HPV. "The [Healthy People] 2020 goal is 80 percent, so we have a lot of work to do," Henley said.

The report was published online Jan. 7 in the Journal of the National Cancer Institute.

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blissful_creations's picture
Replies 3
Last reply 9/5/2013 - 7:45am
Replies by: Tina D, POW, Swanee

I have been following this forum since I was diagnosed in April 2012 with stage 3b at age 25 Since I have had no reoccurrence since then other an atypical mole. I just want to hear some long term survivors because I am having some scanxiety. My last treatment for a clinical trial of ippi with 10 mg is in 3 weeks. (Praise God). I have enjoyed 18 months of relief yet hesitation. Such a contradiction. Anyone else have this dilemma with my complex of being scared yet enjoying the moment especially with my 5 and 2 year old.

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Kate Australia's picture
Replies 6
Last reply 9/5/2013 - 7:13am
Replies by: Tina D, Kim K, vivian, JerryfromFauq, Erinmay22, Anonymous

Hi,

After nine months of regular three-month check ups, my mum's doctor told her she no longer requires these appointments. To me it seems too early to stop, but I may be being an overprotective daughter. Please tell me if I am.   

Here's her story.

Approximately 12 months ago she had a nodular melanoma removed from the middle of her back. The nodular melanoma was more than 4mm thick (it was so thick due to being misdiagnosed as a sebaceous wart when she first went to get it checked out) and not ulcerated. Very soon after the melanoma diagnosis came through she had the surrounding tissue also removed. There was talk at this time of also performing a sentinel lymph node biopsy. However, due to the location of the melanoma (right in the middle of her back) the hospital decided not to do this as they said it was too hard to accurately predict the nearest lymph node and it could be possible that a number of nodes in different locations could all light up and if that happened they would have to biposy them all which we were told can be dangerous. Instead, a CT scan was done which came back all clear.  The removed tissue was also tested and came back all clear.  

For the following six months she had hospital appointments every three months where they physically examined her lymph nodes and found nothing concerning.

At her nine month appointment after having the melanoma removed she had a PET scan. 

The PET scan showed seven very tiny spots on her liver. As the spots were very very small, the doctors didn't seem concerned but due to her history of melanoma, they wanted to perform an ultrasound on her liver one month later to make sure nothing had grown/changed. She had the ultrasound and the spots were still tiny.

The doctor then told mum she no longer needed to have scans or check ups any more. 

It's been approximately three months since the ultrasound.

Does this timing seem right? Should they still be monitoring those liver spots? Or should she be still getting regular check ups or scans? 

Thanks

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JoshF's picture
Replies 2
Last reply 9/4/2013 - 5:16pm
Replies by: JoshF, Janner

Hi All...I have a goofy question but one that is nagging at me. I posted just a few days ago about abump within scar and a possible recurrence vs. scar tissue etc... Anyway, I see doc on Friday but I'm tugging a IF it is melanoma (I know...don't go there...but many of us know its hard not to), and I have to have re-excision, will there be enough tissue to get clear margins? I already had a big chunk taken from my cheek from the first wdie excision. Would this make it unresectable? Just wondering what options would be....leaning towards lump not being melanoma :)

 

Josh

Let's work for better treatments....for a cure!!!!

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mark1101's picture
Replies 7
Last reply 9/4/2013 - 12:00pm

I have been taking Prednisone more or less constantly since April at doses varying from 0 - 80 mg daily.  The purpose of this was to mitigate a rash I was getting as a side effect of my ipi.  I tapered down to zero 9 nine days ago as I had a maintenance IV of ipi 7 days ago and the two drugs don't work well together.  I have had no rash (or any other sude effect) since this last dose of ipi and have not resumed Prednisone.  The day after my treatment I began suffering from no appetite at all and being unbelieveably tired all of the time.  My Onc indicates this is most likely a backlash from the Prednisone and will take some time to settle down.  Has any one els had this particular experience with Prednisone?  How long did it take for these effects to subside for you?

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bball's picture
Replies 2
Last reply 9/4/2013 - 11:19am
Replies by: kreedkall, ccbreeding

has anyone tried Zadaxin and/or Low dose naltrexone to boost the immune system

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mclaus23's picture
Replies 5
Last reply 9/4/2013 - 1:49am

Hi again :)
My dad is wondering the ages of the people and size of tumors on Zelboraf, who it worked for and for how long?

Thanks in advance for your replies!
I'm trying to keep him with PMA!!!

M

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JoshF's picture
Replies 4
Last reply 9/3/2013 - 5:14pm
Replies by: JoshF, Tina D, MattF

It's been 2.5 years since diagnosis. To get to the point, I had follow appt this past Friday. All good! Well this nothing I was rubbing scar on face and when I "scrunched" it during a yawn I felt something odd. Needless to say I felt around but can't really feel anything unless I scrunch my face or put thumb on inside of my cheek in mouth and forefinger on scar. There it was a bump maybe the size of a pencil eraser. My heart sunk! I was just at oncologist! She felt nothing! I know everyone will say go get it checked...which of course I plan on doing right away.

I know it can be scar tissue and I have no idea how long it's been there. I know it can be recurrence. Blood work was fine...LDH was normal and thou thorough exam just days ago by a melanoma specialist! I'm guessing its 50/50 chance of recurrence and knowing nature of this cancer I'm feeling pessimistic. Anyone have any experience or knowledge on this? Would it be local recurrence? Would I need another SNLB? Anxiety is killing me!

Josh

Let's work for better treatments....for a cure!!!!

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MattF's picture
Replies 6
Last reply 9/3/2013 - 4:02pm

so the FNA of mass in Salivary gland came back as Metastatic Melanoma

I saw Oncologist yesterday at UCLA

I asked the basic "right" questions...what he would consider this? reoccorence? Sat Met? Node? or just a MET in local region? or MET to distant organ?

He didnt want to answer any of this right now nor did he want to stage it....obviously we are at stage 3 but 

he wants a PET and then surgery to get in there and find out if the entire Parotid Salivary Gland is consumed? Or is it just a piece? or even possibly is it a node or group of nodes in the Salivary Gland itself. He also wants the tissue for Braf testing.

So it will be a Parotidectody (sp) and Lymphdectomy (sp)

He said after the scan and the surgery he will be able to actually use the pathology and surgery info to clearify what we are dealing wih and then move on to treatment.

Does everyone agree with this?

He did say no matter what they find he will recommend I start treatment after the surgey.

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priyashah38's picture
Replies 2
Last reply 9/3/2013 - 2:07pm
Replies by: Janner, casagrayson

 i have a greyish black line running across the length of my left thumb... very painful... slight swelling ...

This has occured twice in the past also. After a few days, the line diappears and pain subsides. But the problem re-occurs every few months...

can anyone guide me what it could be?

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EmmaR's picture
Replies 12
Last reply 9/3/2013 - 1:24am

Hey everyone, I am about 5 weeks into my low dosage interferon injections and I am really starting to notice a lot of my hair coming out daily. Did anyone else have this problem, or anything similar?
Any stories or advice related to hairloss would be greatly appreciated.
I know I should just be thankful that the treatment is working, but its hard to see so much hair come out every day.

Livin' Lymphless

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StevenK's picture
Replies 9
Last reply 9/3/2013 - 12:59am

I've arranged for all my records to be sent to the melanoma team at Emory. Thanks for the advise everyone on using a melanoma specialist. I hope I've selected a good one. Today I am somewhat calmer, but still very scared.

I've been reading all the stories that get posted here and am very moved. My heart goes out to everyone fighting this disease. I will share whatever bits of wisdom I manage to pick during my struggle. I hope and pray that new medical breakthroughs continue to be made.

Steve

 

 

 

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Anonymous's picture
Replies 9
Last reply 9/2/2013 - 11:07pm

Hi Everyone,

I have stage IV Melanoma, and while I have a few tumors at the moment, I am fortunately living a fairly normal life.  I know that can change anytime, but I am insistent on taking things one day at a time. 

So in just a few days, I am scheduled to have my first Yervoy infusion (sounds like I'm a vodka).  I've glanced over the massive list of POSSIBLE side effects, but don't really have any good information about WHAT I should be prepared for and WHEN side effects might happen if they do.  Also, what should I be asking my doctor before starting this treatment? 

From reading people's comments, all I have gathered so far is that I should get a prescription for diarrhea and have it standing by... and if I have bad headaches, make sure to tell the doctor immediately because it might be a pituitary gland thing.  That's really all I've got... which doesn't feel like much.

So I thought I would ask you!  If you or a loved one is having or has had Yervoy treatments... what advice would you give someone who's just about to start their first treatment?

Thanks for taking the time to respond!

-Mark in Dallas

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MattF's picture
Replies 2
Last reply 9/2/2013 - 10:42pm
Replies by: MattF, Janner

So I'm trying to find the answer and i'm not sure there is just one or if there may actually be seeral depending on who you ask. please let me know if you have a thought or a fact etc.

I was diagnosed through FNA biopsy 2 weeks ago Metastatic melanoma Salivary Gland...old primary was 11 months ago at base of ear.

1. Is Local Recurrence considered within 2 cm of original primary surgical scar...AND more importantly is it considered only CUTANEOUS? or could it be a lump/mass under the skin?

2. Is in transit considered outside 2 cm but before nodal basin...AND more importantly is it considered only CUTANEOUS? or can it be lump/mass under the skin?

I guess im trying to analyze what I have going on. I have actually seen some sites that call in transit and local Recurrence as CUTANEOUS and anything under the skin as just metastatic. The doctors called it a mass within the salivary gland that is positive for metastatic melanoma. But the actual lump is about 2.5 cm from my original primary...and i'm not sure if there are nodes involved also...really just wondering where i stand 

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