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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Dynasysman's picture
Replies 4
Last reply 2/4/2011 - 5:30pm

Had my first post-surgical scan on Tuesday.  A brain MRI pre-surgery revealed a "probable" melanoma behind my left ear.  As a result, we did a contrast-CAT in December that suggested nothing major was wrong.  My ONC decided to repeat it two months later (which was Tuesday).

Tuesday's report was that the "probable" melanoma had not grown at all in three months, and may more likely have been a blood vessel captured at an odd angle.  So far so good...

But another angle of the contrast-CAT revealed a small probably lymph node elsewhere in my left posterior neck region (where the problem started in the first place).  So...we need more pictures in 6-8 weeks before determining whether that's a problem or not.

My ONC and surgeon both say they're not particularly worried, but this isn't exactly the same thing as "all clear".  Very frustrating.

Is this the kind of "NED" experience other people have, or am I just stuck in a funny place?

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Sharyn's picture
Replies 18
Last reply 2/7/2011 - 1:52pm

Hi MPIP family,

I was scheduled for SRS on Monday for 2 tumors. However I just got a call from my Dr to say that one of the tumors has grown from 1cm to 4.5cm in 2 months, so it will have to be removed surgically. The other one will be done with SRS. If anone has any experience with brain surgery, could you please share it with me? I am really scared!

Hugs

Sharyn, Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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kcta224's picture
Replies 4
Last reply 8/3/2011 - 9:52am

Is Leukine the miracle drug for Alzheimer's patients. I'm here because of my Mom. She is now 84 and an alzheimer's patient.

We want her back. She's still here but deteriorated within the last 1 year.

I've been reading about Leukine being a promising drug for Alzheimer's ....allegedly worked in rats--removed all their plaque and they seemed to remember everything after 20 days of treatment.

 

Is anyone taking this drug my mom's age? if so, what were the symptoms you experienced?

If you are not 80 plus, but you were 50 plus or older, have you felt your memory --- improved?

 

thanks for your input.

 

my Mom

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MRFUser2011's picture
Replies 8
Last reply 11/23/2012 - 7:50pm

I keep reading in people's post about annual blood tests (and it sounds as if this is the only follow up for some even at Stage III).  I am wondering if there are specialized blood tests that can detect melanoma?  All I have ever had is a typical blood panel at my oncologist's office.  Thanks for any info.

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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Carole K's picture
Replies 6
Last reply 2/4/2011 - 4:26pm

I felt since so many people asked about the treatment I did, it would be easier to reply on the board.  Let me start by saying  I AM NOT IN ANY WAY OPPOSED TO CONVENTIONAL TREATMENTS.  I just chose after much research to do alternative therapy. 

After having been diagnosed with the brain met and knowing what my prognosis was I fetl alternative medicine was best for me.  I still see my oncologist , and my neurosurgeon and I lvoe them to death.  I made the decision to do anthroposophy. I felt I wnated to live my life to the best of my ability.  I did not want to be sick for whatever time I had left on this planet. 

Let me just clarify that doctors who practice Anthroposophy are MD"s who have gone to medical school, interships and residency.  They chose a different path to practice medicine,  Anthroposophy was started in Berlin and is a standard form of practice there.  Anthroposophy doctors for the most part are part of a community, it's a way of life.. someof you may have heard of THE WALDORF SCHOOL. They are part of the Anthroposphy way of life. they grow veggies hydroponically.  they live a very simple life and for the most part stress free....sounds good to me..

The doctor who prescribed my regime was in the process of moving to Louisville, Ky when I went to the office. I did not see him, but anothe doctor who took over his practice at the time.  Dr. Johnson prescribed injections of Mistletoe, yes,  the kissing branch, this is for the cancer,  astralagus for the immune system and formica for overall well being. I gave myself injections twice a day three times a week for about two- tow and one half years. 

I also became very selfish and began meditating, having massages ( yes I know they are controversial for cancer patients ) and taking care of CAROLE.  I knew I was in trouble and had to do all I could to try to get my body back in balance.... I had been doing a great deal of exercise at the time and continued with it, walked on average of 3-5 miles a day--- to keep the endorfins high.. on the recommendation of Dr. Morton at JWCI.  also I swam daily  ( which I miss more than anything at this point.. I now live on Long Island adn boy where I am it is an ISLAND.  LOL  ).  I was in good shape.Sadly, not any more. 

I followed a macrobiotic diet for two years and am very sorry I went off it.  I strongly recommend it ....  I am following it somewhat but not like I once did. The first four to six weeks are very cleansing..  you would not believe the toxins excreted from your body, your skin breaks out, you have horrible breath and you loose weight.,  but once you are cleansed you will never look better, feel better or have more energy , NO FOOD CRAVINGS... and an overall feeling of complete well being..  Yes, I know I have to get back to it  FULL TIME AND TOTALLY. 

If anyone would like any information please e mail me directly--- melanomahelp@aol.com

Alternative medicine is not for everyone.. DO WHAT YOU FEEL IS BEST FOR YOU.  GO with your decision and NEVER LOOK BACK.  NEVER GIVE UP HOPE.

Love and Light

Carole

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davidroten's picture
Replies 0

Has anyone ran into pseudotumor cerebri wife is stage 4 now and has been diagnosed with this condition.

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LynnLuc's picture
Replies 4
Last reply 9/27/2011 - 12:36pm

I also saw Dr Weber and discussed going back to work. He thinks it's a great idea and says I am doing awesome. He also says I am ona good drug and feels very good and believes I will continue to have positive results...dare I hope! I have 2 more treatments and then I go to anti-pd-1 (MDX 1106) every 3 months....hoping to remain NED! Just wanted to share the news!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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carol b's picture
Replies 6
Last reply 2/4/2011 - 9:59pm
Replies by: DonW, carol b, KellieSue, Fen, triciad

I will find out tomorrow if i am B-RAF positive. Many prayers are needed as i feel it is the best treatment for me.. I found a new tumor under my breast on the rib bone last night about the size of a pea. I guess mel has broken out of the lymph nodes. I dont know what to think about that. Any ways, prayers for u all and thank you all for your stories of inspiration and hope. Praying all is well with all of you

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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elefk's picture
Replies 2
Last reply 2/2/2011 - 2:05pm
Replies by: Lori C, King

I am stage 4 without ckit or braf mutations. What are your best ideas for treatment?

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elefk's picture
Replies 2
Last reply 2/2/2011 - 4:24pm
Replies by: LynnLuc, Fen

I'm stage 4 and my melanoma oncologist is recommending a clinical trial using sutent and avastin together. It blocks the formation of new blood vessels that feed the cancer. Does anyone have any experience with these drugs, eitther first or second hand?

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Jydnew's picture
Replies 7
Last reply 2/7/2011 - 11:20am

Hi,

Due to the big ol' storm coming through the east, my husband's oncology visit was canceled tomorrow.  But his bloodwork shows that he remains NED.  It was 9 years ago this month that he was diagnosed with Stage IIIA Melanoma - 1.33 mm non-ulcerated primary on the the tricep area of his right arm.  He had microscopic deposits in 1 node, found on sentinal node biopsy.  He had a complete lymphandectomy 6 weeks later  - other nodes were clear.  He did no additional therapies.  He gets a CT scan each year, and semi-annual bloodwork, and semi-annual oncology and dermatology visits.  We are vigilant but don't live in fear.

He was diagnosed a week or so after we returned from our honeymoon in New Orleans, a week after his 26th birthday.  We celebrate 9 years of marriage and 9 years of NED, as well as his 35 and my 33 birthday this month.  It's a good month...

I post an update for him every 6 months because I wanted to see these updates 5, 6,7,8, 9 years ago.

Wishing you all the very best health,

Wendy

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Suzan AB's picture
Replies 2
Last reply 2/1/2011 - 7:42pm
Replies by: Suzan AB, LynnLuc

I received hard news today, mets/tumors in my right lung have grown and shown increased uptake.  I have one node in my left lung and nodes above and below my collar bone.  I have read that complete lung removal with treatment has a better survival rate than just getting clear margins (I have a paralyzed right hemi diaphragm with aceiation (misspelled?)  to the lower part of my lung with a large node sitting in there as well as a couple of nodes in the upper part of my right lung too.).  Seeing Dr. at UCSF on Thursday to discuss treatment.  Any suggestions will be greatly appreciated or stories about treatments that worked.

My best to all...I am kinda of numb right now...

Suzan AB

Presently...One Day At A Time.

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Hi Everyone,

     It has been awhile since I have posted.  I lived here at one point from 1999 until around 2007.  It was my life, my support, my escape, my everything as I walked the walk of lung mets and brain met.  I had just gotten divorced when dx with my brain met and this is where I would come  to laugh, to cry and get opinions.  MPIP was my ROCK and I would like to think all of us were ROCKS for each other.  I remember the laughs we had in chat and at times we had to take a deep breath when a newbie came in.  We all knew each other, we knew our families, we got together in Asheville twice, florida, Vancouver, Camano Island, and Dallas.  I know I personally would never have gotten through those difficult times withoiut everyone here. 

Kathie and Tim, Don W, Dian from Spokane, Angie, Mustang Sally, Charlie S, Kim K, KIm Iowa, The Indiana ladies, Claire and Meghan, Guten Tag, Nan, Leslie F and David, Dan and Jackie T, Kag adn her husband Jim, Johno, John from florida, Bill MTL, Pam and Mike Ok, Claudia V., Mary P, Dawn C, Debbie R, Debbie NC, Barbie Girl, Melissa L, Melanie, Heather who had moved to canada to be wtih the love of her life,Whoha, Bill Fla, M arie and Ed, Wendy, Mr.Ed, Shannon, Amy B., Jackie Doss, David from Richmond and later WI..Carver, Janner, Lennie, Misty, Swatts,Jack NYC,and my friends Bonnie and Chip who are still with me on this journey despite loosing thier spouses......   and oh so many many more.    I love and miss all of you soooooooooooooo much. 

I was dx in '95 and did well until the middle of my divorce...  and 4 1/2 yrs. later.. Wham!!!!!!! Lung Mets..  then ten months later Wham!!!  Brain Met.  I decided to do alternative therapy.  Why?  I knew my options and I knew the survival rate. I PERSONALLY did not want to be sick if I had a short time to live. I had just gotten divorced..  LIFE IS TO LIVE TO LOVE AND TO LAUGH..  and that was what I wanted to do.....

I chose to do Anthroposophy medicine giving myself injections.  of mistletoe, astragalus and formica.  it worked for me.  I also decided to be very very selfish I NEEDED TO TAKE CARE OF CAROLE.  As patients and caregivers we have to do that.  We have to take the time for ourselves , down time and just time for ME..  BE SELFISH,  DO WHAT YOU WANT TO DO.. TAKE CARE OF YOU. 

I know how difficult this journey can be NEVER EVER GIVE UP HOPE and do the treatment YOU WANT TO DO.  YOU KNOW YOUR BODY,  IF YOU DON'T AGREE WITH YOUR DOCTOR, TELL HIM.  I left a doctor because he would not respect I WAS THE PATIENT..  it was MY LIFE. 

Ten years has not been without it's mountains to climb.  I keep putting one foot in front of the other...  In this time I have built a new house, lived in Sanibel Florida and Asheville, NC before coming back to reality and live life at the beach.  I have been blessed to see both of my daughters get married to wonderful young men and to see the love of my life.. MY GRANDSON come to this world.  I alwasy knew a perfect man would come along.. He is 2 1/2 and the love of my life, he makes me laugh, laugh til tears roll down my face, we talk and then Mommy has to be ther translator.  lol.  He makes my heart smile.  I am so blessed.

MELANOMA HAS BROUGHT ME TEARS

MELANOMA HAS BROUGHT ME FEARS

MELANOMA HAS BROUGH TME PAIN,

MELANOMA HAS BROUGHT ME ANGER

MELANOMA HAS BROUGHT ME RAGE

MELANOMA HAS BROUGHT ME FRUSTRATION

MELANOMA HAS BROUGHT ME SORROW

IT HAS ALSO

MELANOMA HAS BROUGHT ME SMILES

MELANOMA HAS BROUGHT ME JOY

MELANOMA HAS BROUGHT ME HAPPINESS

MELANOMA HAS BROUGHT ME COURAGE

MELANOMA HAS BROUGHT ME STRENGTH

MELANOMA HAS BROUGHT ME FAITH

MELANOMA HAS BROUGHT M E HOPE

MELANOMA HAS BROUGHT ME LAUGHTER

MELANOMA HAS BROUGHT ME THE OPPORTUNITY TO MAKE AMENDS AND TO NOT LEAVE ANY QUESTIONS UNANSWERED FOR MY DAUGHTERS.  IT HAS GIVEN ME THE OPPORTUNITY TO SAY GOOD BYE..  SOME PEOPLE NEVER HAVE THAT CHANCE. 

IT DOESN'T MEAN LIFE IS PERFECT BY ANY MEANS.  Just look for the gifts this beast has brought us.  take the time to tell everyone in your life how much you love themi, write them letters for them to treasure, take lots of pictures, make lots of memories.  Hang TOUIGH AND KEEP MOVING FORWARD.  To each of you I wish you love, light and joy in your life

Love and Light

Carole

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Anonymous's picture
Replies 1
Last reply 2/1/2011 - 2:50pm
Replies by: LynnLuc

Good day,

I am new & trying to learn.

Please tell me the difference between a cutaneous tumor vs sub cutaneous tumors.

Thank you for your help.

MiMi

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We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV to participate in one hour telephone interviews.

 

The purpose of our study is to understand the full impact of malignant Melanoma on patients, including the physical, emotional and social impacts.  

 

In the interview we will be talking with you about the journey you’ve been through since receiving your diagnosis, covering topics such as the impact of your condition on your daily life and your experiences with different treatments you may have received. The results will be used to assist in new product and treatments under development for this condition.

 

All information gained is reported anonymous and respects patient’s confidentiality rights.

 

Honorarium is $200 for participation.

 

Interviews may be scheduled between 8AM & 8PM February 16 through February 23.

 

Please respond with interest or questions to contacts below.

 

Kind Regards,

 

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710 / jmallery@comcast.net

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