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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cindersma2's picture
Replies 4
Last reply 9/6/2013 - 5:22pm

hi i was newly diagnosed with melanoma. i am 37 with 3 amazing kids and a wonderful husband, along with a supportive extended family. i am very blessed. i wanted to thank everyone on here for being so brave and sharing there stories, it has really helped me this past month. i was diagnosed aug. 2 with a changing mole on my left thigh. it was 2.03 indepth, clarks level 4 with some shallow ulceration. ihad my second surgery sept.4 the wide excision and lymphnods removed to be tested. i am keeping my fingers crossed for clear result.

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Dave from Ormond's picture
Replies 1
Last reply 9/6/2013 - 12:46pm
Replies by: Anonymous

I have Stage IV Melanoma that's not in any organs but is metastatic and has spread from the in transit path. It's mainly in the area between my right armpit and waistline.  

Because my Melanoma has moved, my two Doctors, the Surgical and Medical Oncologists, decided that the best treatment for me was four 200 mg doses of Yervoy.  I had my first dose yesterday.  

I haven't really had any symptoms yet.  I did feel a little tired but for whatever reason I couldn't actually fall asleep until about 3 a.m..  The only other thing I've noticed is that I feel a little light headed.  Not dizzy, just kind of spacey. In fact, when I went to go to work this morning I almost walked out the door without my shoes on!

So my question is whether or not any other 1st dosers had the light headed feeling?  I haven't seen anything stating that this is a normal after effect. 

Thanks.

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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KariSlaught's picture
Replies 13
Last reply 9/6/2013 - 8:57am
Replies by: KariSlaught, Anonymous, Janner

Hi,

 

I'm a 43 year old female who was diagnosed with melanoma yesterday.  So far, I only have the pathology report from the biopsy that was done last week by a PA at a dermatologist's office.  The path report says Clark's level 4 but Breslow depth .29mm.   I have an appointment with a general surgeon next week to talk about scheduling surgery to remove surrounding tissue.  This mole was on my back and it was about .4 cm in size.  I'm thinking that I am safe because the Breslow depth is .29mm.  After researching online I found that Clark's level 4 isn't so great.  Any input would be appreciated.  I'm going to schedule an appointment at a melonoma clinic after I talk to the surgeon.  Can I determine my stage by the path report?  Regression reads not present, Ulceration reads not present and Dermal mitosis is not identified.  

I will not be going back to the PA who did the biopsy or that office.  She called me and said I just needed follow up.  I'm not sure that she really knows what she is doing.  

Thank you!

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My husband had what doctors thought was a cyst removed on his leg in late may. Two weeks later he was told it may be melanoma!
We were referred to a surgical oncologist at MGH who removed the tumor and was confident the margins were clear ( he did no
Lymph node testing). The tumor was large and thick and after meeting with a melanoma specialist it was determined to be a melanoma
With an unknown primary. He had PET and CT scans all were clear.. he tested BRaf negative. They recommended either interferon or a clinical
Trial currently going on for high dose yervoy (10 mg?) We got a second opinion at Dana farber and they feel the same. Dana just repeated all scans
And a brain MRI -NED. The high dose Yervoy trial has been having a few incidence of bad side effects (colostomy-even 2 deaths!) we are starting to have our doubts about trial. We know melanoma is a terrible disease but none of these treatments seem to be a cure. Given no recurrence, or evidence of disease we are nervous about quality of life. We know interferon is no picnic but, we are scared of the high dose trial!! He is not eligible for the lower dose because he has no identifiable tumors or mets. Is anyone out there in the same predicament?? He has to start the trial on Tuesday so any info would be much appreciated!!!!

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bonusfries's picture
Replies 4
Last reply 9/5/2013 - 10:32pm
Replies by: blden2186, Anonymous, aldakota22

My particulars are: 39 yr old, an 11 mm ulcerated primary with 5 mitosis rate. My WLE and SLB were both clean, as was my PET/CT. So when I was asked by my Onc whether to watch & wait, or undergo preventive treatment, of course I replied with "both".

 

I'm starting Peg alfa-2b tomorrow, and I'm excited. I know the numbers on its long term effectiveness don't really warrant such enthusiasm, but at least I get to do something proactive about this.. instead of just waiting and worrying and trying to live a normal life. It also helps that my employer gives us incredible flexibility when it comes to health issues like this, so if they are out there listening, I really appreciate it :P

 

I didn't see that many threads here about Peg experiences, so I will keep updating this as I progress through this year. Hopefully this is just one of many good news stories we'll read here over the next year.

 

Cheers!

Jeff

Just do it

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Replies by: blden2186

I'm trying to stay calm after my 9th day of waiting to hear back on biopsy results from a flat, light brown oval mark a little larger than an eraser on the side of my nose by my eye.  It's been there for a couple of years, but since I cover it with makeup everyday, I haven't noticed it much.  Then about 2 weeks ago I was rubbing my eyes after waking up in the morning and could feel it peeling off - just the mole, no area of skin around it and I haven't been in the sun lately.  It then was just raw and bleeding and didn't seem to scab over, so that's when I went it to have it checked.  I had a Clark II .2mm malignant melanoma removed from my upper left back in 10/2010, so I'm a little paranoid that this could be melanoma again.  And even if it's not melanoma, I'm assuming whatever it is it will have to be removed.  The doctor mentioned that I'd most likely need MOHS surgery - any advice here?

Should I be worried that the results are taking so long?

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lrkg1234's picture
Replies 11
Last reply 9/5/2013 - 8:45pm

Hello all. 

Thanks for the endless support and advice. This board was so helpful in learning and planning for Scott's treatments as well as emotional support.

Scott passed on August 30th, Friday AM at 10 AM.  I was there with him and it was OK.  Peaceful and easy.  He was not afraid and he was accepting of the situation.  I know he is free now.

He was so strong, always working towards the next treatment, never complaining.  But the cancer had taken it's toll and it was time for him to be rid of that body.  We will all miss him dearly, but I know he is much happier now and that we will meet again.

Keep up the fight all.  As time goes on things get much better.  Better treatments, better chances. 

 

God Bless, Lisa (wife of Scott)

 

Below is a link to his online memorial scott-alan-gause.forevermissed.com

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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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