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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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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MaryBeth and Jeff's picture
Replies 12
Last reply 7/30/2011 - 4:41pm

What an emotional day today. Some of you may have read my previous post where my husbands medical oncologist felt he was a Yervoy non-responder......Well... we met with the Neurosurgeon today to go over the findings of yesterday's MRI. Of the 19 brain lesions most are gone and the remaining few are barely visible!!  The neurosurgeon was amazed to say the least. He said he actually expected to see many more new lesions as he felt the brain mets were very aggressive (an increase from 5 lesions to 19 total in 2 1/2 weeks)  and he has never seen 19 lesions respond like that. He attributes this to the Yervoy! (per neuro he hasnt seen Gamma produce such amazing results on so many lesions)Granted my husband is still fighting the ever increasing tumors, nodules and sub q's on his neck, back, legs, arms etc. which seem to have appeared rather rapidly after his 3rd Yervoy treatment. (He finished his 4th and final Yervoy treatment on July 15th). His neuro does not feel these are immune responses...but hey, let him stick to his gamma knife expertise...because the medical onc was mistaken in determining my husband was a Yervoy non responder. I give all the Glory to God and continue to pray for all of the fellow warriors who are fighting this insidious disease. 

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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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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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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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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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Replies by: SuzannefromCA

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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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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alexandra's picture
Replies 7
Last reply 7/26/2011 - 9:30am

Hi -

I got my pathology report today. Here's what it says:

Micro examination: This excisional biopsy measured 9 x 6 x 1 mm. and is cut in three sections and submitted in toto. In parts of the lesion there are typical features of dysplastic nevus with lentigunous proliferation of nests and single atypical pigmented melanocytes along the dermo-epidermal junction with fibroplasias in the dermal papillae. However, there are areas in lesion of epithelioid pigmented melanocytes in the epidermis. There is some upward migration of single cells. As well as there are similar nests of atypical melanocytes infiltrating the papillary dermis with a dense infiltrate of lymphocytes and melanophages. The morphology is compatible with a malignant melanoma, level 2 invasion developing in a dysplastic nevus. The vertical height measurement is 0.47mm. and there is no ulceration. The lesion is completely excited in the plane of section examined. The mitotic index is two mitoses per 1mm. squared.

Diagnosis: Malignant melanoma developing in a dysplastic nevus, level 2 invasion, vertical height 0.47mm.

I honestly don't know what it says. I would also like to know if anyone recommends SNB. The doctor said I don't need one, but I want to make sure that I make the right decision.

Thank you!

Alexandra

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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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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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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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TracyLee's picture
Replies 2
Last reply 7/25/2011 - 6:49pm
Replies by: StevenK, shellebrownies

Hi y'all,

I will be going to U of Penn in Philly to join the BRAF+ extended access clinical trial.

Anyone else currently in that trial?

I'm hoping to see Dr. Schuchter once, get the meds, and then mainly be followed here in Delaware, as I do with Dr. Sharfman at Hopkins.
 

I really don't want to haul back and forth to Philly more than I have to, I'm almost out of time off at work. I am blessed to have both short and long term disability offered at work, but hate to go that route.

What should I expect at my first appointment for this trial? Long visit, short visit?

And, finally, I didn't mesh well with Dr. Schuchter last consult. However, I'm deferring to Dr. Sharfman's opinion that she is the one to see for this trial. I'll suck it up, I guess!

Thanks as always to the posse! Final ipi on Thursday, then BRAF as long as it will work. I see IL2 in my future, hopefully, wayyyyyyy down the road.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Wally's picture
Replies 4
Last reply 7/26/2011 - 11:16am
Replies by: Wally, MichaelFL

My initial post, profile and subsequent post will indicate my history and I am extremely grateful to all of the veteran's on this forum for the extremely gratious and possitive responses. I was supposed to have had a follow up in September following upon my surgery in April but have been experiencing rather sharp pains in my right rib cage so thought I would see the Oncologist Specialist Surgeon as I thought it may be that the wound was not healing properly. An X-Ray indicated a possible pseudo-tumour. CT scan was recommended confirmed a pseudo-tumour mayor fissure right but no evidence of metastatic disease. The Oncologist was not comfortable with this diagnosis as she had requested that they focus on mt ribs as that is where the pain was. She studied a 3D image on a CD and observed what appeared to be erosion of the 8th rib. Increased tracer uptake noted a whole series of problems with empahasis on irregulare increased uptake in ribs 7 & 8 right postero-lateral, with focal intense uptake in rib 8 right lateral, and a possible photopenic area as part of thios lesion, although it is not convincing.

The comment was:

"1. Scintigraphic findings are in support of focal intense osteoblastic lesion involving +- ribs 7 and 8 right lateral, and very intense in rib 8 - these are very suspiscious of possible osteoblastic skeletal metastases, or local spread to skeletal from primary lesion, with possible osteolytic component.

These lesions appear of a subacute nature."

I need to know what this all means. I will be seeing the surgeon who removed the melanoma from my lung in April tomorrow morning at 9 to see what he suggests. The Oncologist has suggested that rib 8 be removed to avoid further spread. I will also have rib 8 biopsied tomorrow to confirm the spread.

Has anyone else on this board had a similar experience. I was told that all was clean and no further spread was possible now it has entered my bones - will it spread even further into my other ribs / body parts?

Please give me some good news?? My wife and I are scheduled to leave for the UK on Wednesday to witness the birth of out second grand daughter - and now this.

I thank uo all most sicerely.

Wally Key from South Africa.

The sun shines at the dawn of each new day even though it may not always be visible.

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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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