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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AlanM's picture
Replies 9
Last reply 8/2/2011 - 8:33pm

I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok.... Any thoughts?


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JerryfromFauq's picture
Replies 8
Last reply 8/2/2011 - 3:46pm
Replies by: JerryfromFauq, Anonymous, Teodora, Becky, MichaelFL

Many times recipes have been exchanged on this board.  Many pople, as well as Rox has provided many tasty ones.  Please folks, let's change the subject to ones that many of us are more comfortable with. 

I'm me, not a statistic. Praying to not be one for years yet.

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boot2aboot's picture
Replies 20
Last reply 8/2/2011 - 2:17pm

wanted to update everyone on what is going on

i have fast growing mel that spread to lungs and liver since i was initially diagnosed stage 3c in april...found out i am braf + for V600e...and venfenib is not offered here yet...

i am doing 2nd round of cvd (cisplatin, decarbazine and vinblastin) which is kicking the shit out of me...i get rescanned on the 15th of august and on the 16th, my records and i are going to tampa to moffitt to interview for braf/mek trial there...i did finally find and talk to an onc here in uh-oh (ohio) about yervoy and they seem to want to hold off until my status for trial...when i mean chemo is kicking the shit out of me is 

a. i think it is affecting my heart

b. definitely affecting hair loss, bowels and energy

c. i hate this shit

d. i have a 'gut ' feeling it isn't working...just instinct, but i trust my instincts more than oncs here

e.i am scared

f. i feel these oncs don't want to do anything with me (feel this lump here, or there) and go by scans and blood tests alone and don't care about side effects...

g. i don't want to research this crap very much any longer.


don't back up, don't back down

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mbaelaporte's picture
Replies 21
Last reply 8/2/2011 - 1:39pm

I'm new here and want to thank you all for your participation


I am five weeks plus into PLX - B Raf trial and from the get go have had very impressive results regarding reduction in tumor size & evidence - tumors very obvious to eye & touch.  My first scans will be in about three weeks since beginning trial and I will post radiology reports.


Realizing how new this therapy is and how few patients are involved  with so few oncologists I'm hoping to share / study info on side effects and experiences  with a broader base than even my caregivers might maintain.


As I've said tumor reduction has been nothing short of miraculous

other effects:  sensitive warm scalp;

                          a couple bouts of excruciating skin burning pain chin/ears to eye brows ( three days in row about three 

                          weeks ago lasting about 30 minutes per episode ) not sure how much was medication driven or    photo 

                          sensitivity (increased w/ medication) but I had been vigilant in prevention of exposure;

                          increase in actinic keratosis lesions and ones present when trial began more amplified - both my 

                          oncologist & dermotologist who works w/ her think it fine to treat these lesions thinking they are 

                          probably considering combo liquid nitrogen & efudex - Anyone have lesions treated while on B Raf


                          also just now experiencing very sensitive feelings on the bottom of my feet


am most interested in your experiences or information you have garnered

all the best to you, Salud john

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Ray from NYC's picture
Replies 6
Last reply 8/2/2011 - 10:10am

Hi all,

I have a close family member who is Stage IV melanoma, and I have some questions about Yervoy and its side effects.  Any feedback would be appreciated.  Thank you very much!

1.  Is it good to get side effects, particularly diarrhea?  And is it better to get them quickly?  I understand the side effects can be difficult to deal with and even dangerous, but do they mean that there is a better chance the ipi is working?  If so, could you point me to info/data/studies/reports on this? 

2.  If you get diarrhea and then are given a corticosteroid (prednisone) to counter-act those effects, does the prednisone act to partially/completely reduce the efficacy of the ipi? 

3.  Can the ipi and/or prednisone be a reasonable explanation for unexplained and very sharp and debilitating hip pain in one hip?  (This one hip also has an artificial replacement.)   A team of doctors (oncologists, surgeons, hip experts) have ruled out the patient's melanoma as the cause.  Tests run for this include X-Rays, MRI, bone scan.

(Any cites to news or journal articles, etc., would be appreciated.)

Thank you very much!  From reading the posts here, this is a wonderful community, and I wish everyone the best.


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Nebr78's picture
Replies 7
Last reply 8/2/2011 - 8:19am

Now that I have stopped anymore chemo and am ready for hospice when I need it, it seems as if  my Cancer Dr. don't care much about my condition at all.  Of course he don't make as much money this way and not administrating chemo.  I apologize for being a bit bitter, but I am afraid all this cancer treatment, etc. is done just for the money.  Research sure isn't coming up with  anything.  I am going to donate my body to a Medical School so lets hope they can learn something from it. Heart Disease for over 40 yrs. and Melanome for 7-8 should provide something interesting.



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lvitelli's picture
Replies 15
Last reply 8/2/2011 - 1:01am
Replies by: JerryfromFauq, lvitelli, washoegal, nicoli, Janner, Anonymous

I was recently diagnosed with Stage IIIA melanoma. I had a lymph node mapping the same time the melamona was removed from my left forearm. A microscopic cluster of melanoma was found in my sentinel node. That node and two others were removed. I still have my remaining lymph nodes under my left forearm. At this time, we do not know if there is any cancer in those remaining nodes. My doctor does not recommend surgery. In her opinion, the chances of melonoma outweigh the risks and negative effects of the surgery. Her recommendation is an ultra sound on the under arm every four months and a PET scan every six months. I've had one of each and so far, so good. I'm  just not sure what to do. She feels very confident in this treatment. I believe in her but have to wonder if I should do everything possible to make sure the cancer isn't there and doesn't return. I've adjusted my diet to eliminate the so-called bad foods while drastically increase the "good" foods. I drink green juices, eat lots of garlic, onions, kale, etc. I take an immune boosting multi viatamin along with D and C and drink three cups of green tea a day. Wondering if there is anyone out there with a similar situation? Anyone that had the surgery not knowing if there was any cancer in the remaining lymph nodes and the effects being felt now. I am very positive and optimistic but also want to do whatever I can to watch my beautiful 4 year old grow up.

Thank you

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bball's picture
Replies 3
Last reply 8/1/2011 - 9:42pm

what is normal protocal for ct scans in first year 2a. also having pains in my upper abdoman but had clear ct scan 5mos ago . any input?

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Cynthia C's picture
Replies 3
Last reply 8/1/2011 - 7:24pm

Just a little note to let you know how much I respect you and care about you. Thank you for sharing your lives with us. The bond you share is unshakable, inseparable and unstoppable. I believe you will meet again. May God protect you and guide you on the journey yet to come, keep you warm and safe in the shelter of his arms forever.

Cynthia C

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TracyLee's picture
Replies 7
Last reply 8/1/2011 - 7:03pm

Hi y'all,

Fourth and final ipi transfusion today. The consensus is that I'm not responding, I'm praying I'm a late response.

I must brag on my team. I was supposed to have my treatment yesterday afternoon. Hospital called and said I needed to re-schedule to 4 p.m. today. They couldn't obtain the drugs sooner.

Now, our transfusion center is open from 8 a.m. - 5 p.m. This process takes around 2.5 - 3 hours. So I knew 4 p.m. was too late to start. doctor and his assistant volunteered to stay with me until I was done. I call that caring above and beyond the call of duty.

Next week up to U of Penn to start BRAF+ expanded access trial. Prayerfully I respond to ipi/BRAF. My neck is very distorted, although I'm able to hide most of it with my hair. Plus I had fluid in my lungs and had to be drained this past Wednesday.

Praying for a comfortable, and responsive, weekend to all the warriors and caregivers, on this board.


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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Lisa13's picture
Replies 12
Last reply 8/1/2011 - 3:54pm

I've been thinking about all these "stat numbers" for ipi and all other drugs in clinical trials. These results are from a large group of people from different ages, health status, sex, etc.  My question is, have any of these studies been broken down (mainly in Stage 4 patients) in terms of M1a, b, c, LCD levels, health etc?  I think any of the results would be very different if they were broken down in these groups since some people with Stage 4 are healthier and have controlled disease over others.  Take for example, the TIL program at NCI. My oncologist mentioned that even though the results are good from this trial, Rosenberg is very selective in who is accepted in the program and it's mainly people who are healthy, so these people would generally do better under these circumstances, or so you would think. 

Going into an ipi trial myself, I look at all the numbers from previous trials and wonder what everyone's predicament was at the time. With IL-2 - they claim that 6% have a complete, durable response - were these people younger, healthier, less disease, etc??  As I'm fighting this beast, I dwell too much on the numbers and look for the odds that something will work and it drives me crazy!  I'm going to try very hard to go into this ipi trial and just hope for the best and not dwell too much on the numbers.

Lisa - Stage 4

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

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emilypen's picture
Replies 12
Last reply 8/1/2011 - 2:30pm

Hey All,

Jason just finished his 2nd dose of IPI today.  So far no side effects.

Unfortunately we found out yesterday that he now has at least 4 brain lesions. He had a CT last Friday and they were seen on that. So Brain MRI tomorrow and then we decide between WBR or Gamma knife. Our radiation oncologist is great and he's making sure things happen fast.

Our oncologist did say that Jay's bloodwork from Wednesday shows an increase in lmphocites, which is a positive sign that his body is having a response to IPI. So fingers crossed. Our hopes are that if the radiation can take care of the brain mets then hopefully IPI will kick in before any more show up.

Luckily he is having no symptoms of brain mets, so they're hoping they caught them early.

The pregancy is going well, 10 weeks now. Due date is Feb 2012, every part of me is hoping and praying that IPI kicks the beasts butt so he's here to enjoy the baby with me.

keep fighting,



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Nebr78's picture
Replies 6
Last reply 8/1/2011 - 8:52am

I finished my radiation treatments then Dr. gave me a chemo with 2 medicines and I don't know what all.  Anyway about 2 days later I was the sickest individual without dieing which I wanted to do. Any way this went on for 10 days and am still not well.  Went to an Oncologist yesterday and he made it quite clear.   Since I want no more chemo, he suggested I look into Hospice plans.  That  I am doing.   I am still not quite convinced it is the Melanoma on the spine that is doing it. Radiation must not have stopped it.   I am going to ask if I could take another CT scan just so  I can see.  Last one was nearly a month ago.   But the Dr. I talked to seems to think it is all over the body . I am taking a lot of pain medication for pain in right hip.   Guess that could be coming from the spine.

Having heart disease for over 40 years, and melanoma for about 5 years, enough is enough.  I am 79 and have had a good life.   Retired for 17 yrs. and that is not bad.  Except that someday I would like to go  all day without  pain.

I don't much about Hospice Care but will find out the next few days.    Thanks to all

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(I have reposted this here from the off topic in hopes of further assistance) I know this is breast cancer, but it never hurts to ask!



Dear All

My wife has Stage IV secondary breast cancer ( )

We have come all the way over from England as the NHS ( National Health Service ) back there have basically told her that there is nothing else they can do, to the Burzynski clinic here in Houston, Texas.

The doctors have put together a plan that comprises of Abraxane/Avastin and Tarceva. 

My wife is allergic to Taxol and i believe that the Abraxane is of the same family but composed differently, I would love to hear from anyone who is allergic to Taxol but has managed to have Abraxane and how they have found it.

Also trying to put my wife's mind at ease i would love to hear of other peoples stories regarding the combination of these drugs, their success rate and side effects. 

Many many thanks for taking the time to read this. 


(My response to the post:)

Hello Christopher:

I will re-post this for you on the main forum as this is the off topic forum. You will get more responses there. I also must tell you that this is not a breast cancer forum, but maybe someone will be able to assist you.

You are correct, Taxol and Abraxane are both Taxanes, but Abraxane uses no premeds as it does not contain the chemical cremaphor, which is made from pine trees which MANY people are highly allergic to.

A little more depth: Yes, Abraxane and Taxol are similar drugs, but Abraxane is further reacted with albumin (and a sugar molecule) so that the result is water soluble. Taxol by itself is not water soluble so it must be emulsified with Cremophor EL (which is highly refined castor oil ethoxylate). It is the Cremophor EL that people are allergic to which is why benadryl and decadron are given as premeds. Since Abraxane is self emulsifying, you do not need the premeds.


This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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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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