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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Spread the word to smart melanoma researchers:  http://www.safefromthesun.org/about/innovative_research.html 

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CJK's picture
Replies 4
Last reply 7/28/2011 - 4:09am
Replies by: CJK, MichaelFL, Janner

Hi all

I've been following this forum pretty closely since I was diagnosed with melanoma about a week ago, and thought I would ask for some help understanding my histology report. 

I had a skin shave biopsy of a mole on my shoulder in June.  I think it grew over the course of about 6 months (it bled in the last month or so).  My GP thought it was a pyogenic granuloma - hence the skin shave biopsy.  It was nodular malignant melanoma.

I had a CT scan but have not  received the results.  I am scheduled for my WLE and SNLB in a couple of weeks and I know the results from these will determine the staging.  In the meantime, I am trying to better understand my situation so I can prepare myself.  If possible, I would like to know the good and the bad signs of the report.  Here are the details:

Macroscopic description:

10 x 3 x 7 mm

Histology:

The skin shave specimen shows an extensively ulcerated malignant melanoma in the vertical growth phase.  It is composed of variably sized nests and sheets of pleomorphic melanocytes which lack maturation with depth.  Deep dermal mitotic figures are identified and occasional cells show cytoplasmic melanin pigmentation.  In this sample, the depth of invasion is at least 3.2 mm.  The presence of a junctional component is difficult to assess due to epidermal ulceration.  On immunohistochemistry, the tumor cells are positive for S1oo and Melan-A and show focal positivity for HMB-45.  It is widely present at the margins of this shave sample.

From what I have read, a 3.2mm ulcertated tumor is IIB, is this correct?  Can anyone make sense of the sentence about the 'variably sized nests'?  Is it a good sign that the pleomorphic melanocytes lack maturation with depth?  I'm not certain if it is abnormal, but when my GP was removing the tumor via skin shave she said it almost fell off.  Granted, I had bumped my shoulder against a wall the week before and done most of the work for her, pretty well ripping the mole out of my arm.  I didn't receive the numerical figure of the mitotic rate, but is there any indication from the description in the report?  Finally what is the significance of a junctional component or the presence of melanoma at the margins of the shave sample?

I realize there are quite a few questions here (of course, it's not the half of them).  Any assistance would really be appreciated. 

 Thanks

 CJ

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debandmike's picture
Replies 3
Last reply 7/27/2011 - 11:19pm

Today was Mike's day to return to Karmanos for another week of IL-2. This will be his final week of treatments for awhile. Doctor seems to think he is responding well to the drug with minimul side effects.

When this week is done Doctor says it is best for us to wait and watch since the IL-2 can take awhile to work. Has anyone else been told the same thing? One thing I have learned over the last six months or so is that this beast is something that is always on or atleast in the back of your mind. With Mike and I being told back in February that he had less than a year to survive, I'd  say we are ahead of the game somewhat. What a blessing for us.

We are hoping to be able to enjoy the rest of the MI summer hoping Mike will feel much stronger and not as tired so we will be able to enjoy some sort of get a way which we very much need.

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Hi All...I was diagnosed with stage 1B melanoma in January of 2009.  Small mole on my left should that I had my entire life that one day went from brown to black.  Had local wide excision with sentinel node biopsy done on two sentinel nodes.  Everthing was clear and I was staged at 1B based on depth.  All tests and surgery were done at CINJ (New Brunswick, Dr Lee).  My follow up treatment is very simple (which has me concerned).  I now get blood work and a chest xray twice a year at 2 years out.  For the first two years it was done at every 3 months.  Here is where my concern comes in...my father had a mole in almost the exact same place 8 years prior.  Cancer free until October 2010 when it returned to his left lung.  Once again cleared through his PET scan on Jan 29 2011.  April 28, 2011...melanoma returned with a vengeance going to remaining lung, liver, brain and bones.  In light of the family history I am concerned that the cancer will come back.  My father's oncologists have all said "it is the silent cancer"...hiding until one day it just comes back and there really is no detecting it before it comes back.  I currently go to Fox Chase in Philadelphia for my follow up care because CINJ wasn't the best experience for me.  My doctor's nurse was very laid back and would barely palpate my lymph nodes during my exam.  I didn't see my surgical oncologist once after the day he performed the surgery.  All follow care was with his RN.  Fox Chase dermatology department is beyond thorough...love Dr. Zook!  I tried to get into the Genetic Risk Assessment Program at Fox Chase BUT was told I do not qualify because there ins't enough family history (guess me and my father having melanoma isn't enough?)  So...my question is, what follow testing do you receive?  After I want to be as proactive as possible and just feel that a simple chest xray and bloodwork really isn't enough.  Any advice would be appreciated...thanks much!

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alexandra's picture
Replies 13
Last reply 7/27/2011 - 8:57pm
Replies by: alexandra, bcl, Janner, Anonymous

Hi -

I got my results today. The doctor's office said melanoma stage II. She said that I should come in today to see her. Unfortunately I'm away from home and can't make it until next Monday. The doctor was totally fine with that and said that I can come in even in 2 weeks. They couldn’t tell me any details over the phone and the only thing they said is that this is a very early stage. Now, I'm schedule for an appointment for next Monday and the doctor said that I'll have more skin removed. I'm worried, because everywhere I read they say that if it's a stage II I should have a biopsy of my lymph nodes as well. She never said anything like that. She's also a dermatologist and I'm wondering if the second procedure shouldn’t be done by a surgeon. I'm sorry for asking so many questions, but I have a 2 month old baby and a 3 year old and I'm really worried.

Also, I'm from Canada and I'm wondering if they have different procedures. Like for example they don't refer you to a surgeon until a further stage.

Thank you so much for your replies!

Alexandra

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moore's picture
Replies 4
Last reply 7/27/2011 - 4:58pm
Replies by: Harry in Fair Oaks, Anonymous, moore

I am about to finish a year of Leukine injections.  I contracted MM in 2004.  In the past 3 years I have had a lung resection and a spenectomy.  Leukine was ordered to strengthen my immune system and, hopefully, prevent melanoma cells from attaching to other organs.  So far, so good.  Latest scans are clear.  My wife is terrified that lesions will reappear after I go off of Leukine.  Do other MM patients have experience with Leukine?

Moore

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We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study.  He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say.  He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda.  His oncologist, Dr. Khushalani,  totally supported his decision, and put together all the necessary paperwork to fax down to NIH (even emailing me Rosenburg's latest report study on this trial last week for our reference). His PET result was good, indicating only the lymph nodes in the chest (bulky disease), and two very small hot spots - one a node by his collar bone, and one a possible sub-q near his original primary.  Both were too small to see on a CT scan.  His brain MRI was clean, and nuclear stress test and breathing tests were good.  On a side note, he was B-RAF wild type - so I am assuming that any future trials with B-RAF and IPI would not be a possibility for him.

Hopefully we will know by next week what his decision will be for treatment.  Because his disease is bulky, they do want him to start something quickly, as the nodes are pressing on some vital blood supplies that we do not want compromised.  Although, if they were he would have to have radiation prior IL-2, which is one of the options we had pursued.

Thanks to all of you have replied over the last few weeks - you have led us in the right direction.

Best wishes to all,

Maria & Dave

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b767man's picture
Replies 8
Last reply 7/27/2011 - 2:37pm

Seeing Oncologist Wednesday to make a decision on treatment.  Stage 2b, Clark V, 6mm.  Any thoughts from those who have done it would be appreciated.

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Lisa13's picture
Replies 7
Last reply 7/27/2011 - 9:46am

Dacarbazine has not worked for the mets in my lungs unfortunately. Even though I'm disappointed, I'm happy to report that the melanoma is nowhere else in my body, no new tumours appear in my lungs and the ones in my lungs have only grown a wee bit.  It is a little comforting knowing that since the end of April, the mets in my lungs are slow growers  which puts me in a good position for Yervoy which I'll be starting in 2 weeks (pending brain CT on Friday).  

My oncologist is the lead investigator on the trial for IPI here in Toronto and knows his stuff. He reminded me of Jimmy B with all his scientific data which confused the heck out of me :)  Clinical trials are the only way to get ipi here in Canada and I'm lucky to be 15 minutes away from the hospital! Hope is certainly not lost!

For the next week, I'm going back to my vitamin/supplement protocol (oh, how I've missed you!) and gearing up for Plan B!   

Lisa

Many impossible things have been accomplished for those who refuse to quit

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DeniseK's picture
Replies 9
Last reply 7/27/2011 - 8:42am

Hi Everybody! 

I just changed my profile pic to show you the pic of these red bumps that have come up in the past couple of days.  They're firm to touch and resemble a pimple without a head.  I talked to the oncologists office today and told them of the bumps but still have appointment scheduled for 2 weeks, August 9th.   I have no idea what to look for as far as a recurrence.  The bumps appear just above my scar line.  Thanks for all your help!! 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Hope Returning's picture
Replies 6
Last reply 7/27/2011 - 8:11am

Looking for an active kidney cancer discussion group for recommendation on kidney surgeon for a melanoma long term survivor withe tumore (met?) to kidney that needs to be operated.

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StevenK's picture
Replies 22
Last reply 7/27/2011 - 12:25am

I've been driving myself crazy by reading a lot of studies. I always end up scared and in a bad mood. My family says I am no longer fun to be around. I've learned a lot that I didn't know before, though, so maybe I have to go through this process. So many statistics, though, and so much conflicting information. It's maddening! 

Are we all prisoners of these stats or are there things that you can do to make it less likely that you will get a recurrance? If you whipped your body into the best shape of your life and ate super healthy, will that really make a difference or will some study conclude "no significant survival benefit"?  

The stats are in my favor at present, it seems, but certainly no guarantee. I hate the idea of passively hoping for no recurrance. I feel a need to take some kind of action to seize control of my fate, but is there really anything that a person can do that can make a significant difference?  

Steve

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Replies by: StevenK, KellieSue

Dr. Servan-Schreiber, Author of Anti-Cancer: A New Way of Life Passes Away.....His brain cancer returned in May 2010 .... However, he survived almost 20 years after his diagnosis when he says the doctors originally have him 6 year life expectancy.... Hawaii Bob

 

David Servan-Schreiber, who wrote about cancer battle, dies at 50David Servan-Schreiber, a French-born doctor and neuroscientist, became an advocate of harnessing the body's own defenses to fight cancer after learning he had a brain tumor 20 years ago. He turned his personal journey into books that changed how the disease is viewed and treated.

  •  
 
David Servan-Schreiber

From David Servan-Schreiber's research came the book “Anticancer: A New Way of Life,” published in 2007, that sold 1 million copies and led to a sea change in how cancer was viewed and treated. (Viking / Penguin / July 26, 2011)

 

By Kim Willsher, Special to The Times

July 26, 2011

 

When he was diagnosed with a malignant brain tumor 20 years ago, David Servan-Schreiber, the French-born doctor, neuroscientist and later bestselling author, took the phrase "physician, heal thyself" to heart.

Submitting to the punishing traditional treatments of chemotherapy and radiotherapy, he still felt there was something more he could do to enhance his chances of survival.

Armed with his will to live and a belief that the human body had little-known cancer-combating capacities of its own, he set about looking into the way we understand and battle the disease.

From his research came the successful book "Anticancer: A New Way of Life," published in 2007, that sold 1 million copies and led to a sea change in how cancer was viewed and treated.

Servan-Schreiber's near two-decade exploration of the science of cancer was a personal and professional journey that took him from the verge of death to good health and back again twice before ending in his death Sunday at a hospital near his family's home in Normandy. He was 50.

Even when told last year that the brain cancer had returned and would almost certainly kill him this time, Servan-Schreiber refused to give in, continuing to promote the idea that, parallel to traditional medicine, healthy eating along with meditation, yoga and "a new way of life" could extend the lives of cancer sufferers.

David Servan-Schreiber was born in the wealthy Paris suburb of Neuilly-sur-Seine on April 21, 1961, the son of a celebrated French family with Prussian Jewish roots. David was the eldest son of Jean-Jacques Servan-Schreiber, a respected journalist, essayist and politician, who died in 2006.

He studied medicine at a children's hospital in Paris, finishing his medical degree at Laval University in Quebec in 1984 before specializing in psychiatry in Montreal and moving to a research post at Carnegie Mellon University in Pittsburgh, where he earned his doctorate.

In 1991 he went to Iraq as a volunteer medic with the French-based Doctors Without Borders, the nongovernmental organization that won the Nobel Peace Prize in 1999, and later co-founded the U.S. branch of the charity.

The story goes that he discovered he had a brain tumor only when in 1991 a research patient failed to turn up for an MRI scan and Servan-Schreiber took his place.

He underwent treatment but had a relapse a few years later and began to seriously turn his mind and his work to the effects of diet and lifestyle on the incidences of cancer and depression.

His first book, "Healing Without Freud or Prozac," published in 2003, was translated into 29 languages and sold 1.3 million copies. "Anticancer" followed four years later.

Certain critics dismissed Servan-Schreiber as a "new age guru" who proposed quack theories that more vegetables, more exercise and less stress were a cure for cancer. On the contrary, he was quick to admit that traditional methods such as chemotherapy and radiotherapy were the first and most important salvos in the battle against the disease. However, he believed the body harbored a number of natural defenses that could create a terrain in which cancer would find it hard to thrive.

Said Ursula Gauthier, journalist and coauthor of his last book, "We Can Say Goodbye Several Times": "He wasn't a great thinker, a philosopher or a mandarin of science or medicine. He described himself as a scientist and a human. He was a mixture of heart and head, intellect and emotion."

Servan-Schreiber was told his cancer had returned when a brain tumor, which he called the Big One, was diagnosed in May 2010.

At the time he said: "Death is part of life. It happens to everyone. Profit from now, do the important things.

"I am convinced that 'Anticancer' has played an important role in the fact that I survived cancer for 19 years when the first diagnosis gave me only six at the most."

Survivors include his wife, Olga Tereshko, and a son, Alexandre.

 

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MaryMary73's picture
Replies 5
Last reply 7/26/2011 - 11:48pm

After being diagnosed Stage 1 back in Nov 2010, I have been hyper-vigilant about any changes on my skin. At the end of June, I went for a pedicure. The heels on both my feet are quite rough and thick. Anyhow, about a week after my pedicure, I developped a blister-type of bump. Hurt like crazy but eventually the hurt subsided. I went to my podiatrist on June 19th (last weeK). He looked at it and said it looked like a blood blister and I shouldn't be so worried. He cut it off, cleaned it up and sent me home to change my bandage every day. I saw him again today. He took off the scab and said he thinks sees a tiny red/pink lesion. He said because of my melanoma history, he wants me to see my dermatologist. Dermatology appointment tomorrow at 1pm. I hate this. I really really do.

The only real wisdom is knowing you know nothing -Socrates

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llw75751's picture
Replies 6
Last reply 7/26/2011 - 9:03pm

I am new to this board , have been following for some time now, but first time to post.I am in houston hotel awaiting my 3rd visit to MD Anderson, I had originally came here to start IPI Friday, but scan results thursday shows brain met, which is reason for gamma knife tomorrow. I was kinda of shocked by the news so did not ask alot of questions that i should have and i know you guys are full of great information.

So first question is for anyone who has had gamma knife procedure, exactly what is this? procedure? down time?etc.

and the scarey question Bio Chem how bad is it really? I know every person is different but there are those symptoms that you can pretty much expect what are they???   please help!!!!!!!!!!!!!!

Thank you in advance, I have not put anything on profile yet, but will. I am actually in lobby of hotel so limited on time. I will check back later and thanks again.

Laura

I cant take a step LORD without you holding my hand

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