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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Anonymous's picture
Anonymous
Replies 3
Last reply 3/8/2012 - 4:09am
Replies by: davidfromsingapore, washoegal, Anonymous

Hi, my husband and I have been married for 5 years and have very young children.  He was diagnosed at stage III before we were married and he recurred just after we were married.  So together we have been fighting it for 5 years, surgeries and clinical trials, etc.  The first bit of good news we have received was about 6 months ago, just after he was given 2-3 months we found out that he was a late responder to ipi, we were so excited however we have just found out tonight that the cancer has started to regrow again in several places, specifically his lungs and liver. We have talked to our oncologist and know our choices and will see him again early next week.  

My husband has struggled for a very long time with this disease and fought to get up every morning and have a purpose, to keep moving forward as best he could.  We have struggled in our marriage at times, but without ever having the appropriate discussions to resolve any issues things have just built up. When we were given the good news about ipi I knew we also needed to work on our marriage, some terrible, hurtful things have been said over the last 3 years or more and without getting into specifics there has been ongoing verbal and emotional abuse and I was able to keep it in check before the cancer had come back the first time (4+ years ago) but began to let it go, trying to understand that he was going through treatment, etc and how difficult things were for him with that, work, and a new family. WIth the good news about ipi I needed us to speak with a therapist that could help.  It has been stressful over the last 6 months, we have tried to have some good times like christmas and the holidays but it hasn't always worked. He has been unable to apologize for anything he has said or done, there have been some very poignant times in our marriage where he has confided in his mom and the two of them have been together as a united front, whether it is something as silly as how the spice cupboard is organized or as important as what plans will be made after his death as far as assets, financials, etc and as far as going to see a lawyer together to discuss writing visitation rights into his will for her with our children after his death - she is divorced, her ex-husband it remarrying and she has written her daughter out of her will and is no longer speaking to her.  I guess before I ramble on and on tonight he has said htat the stress of the last few motnhs probably hasn't helped, and I am sure it hasn't but I can't be blamed for all of this, the therapist has tried to help us and has said that the things he is saying to me our incredibly hurtful and terrible, I guess I can feel myself starting to slip into balming myself for the return of his cancer as I believe he is getting at and I am sure his mother will also say.  I am at a loss for any words to describe what i feel and am not even sure this post makes sense.

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jmmm's picture
Replies 5
Last reply 3/8/2012 - 10:19pm

This is a strange question, but my husband has been stage 4 since last January. We have 3 young boys and I obviously worry about them getting melanoma. They all have moles and get more each year. I asked the pediatrician about it and he said not to worry and just use sunscreen. My husband's tumors are all internal, so I'm not 100% sure I would recognize melanoma on the skin. Are there any other young moms or dads dealing with this? When do other pediatricians recommend seeing a dermatologist? I would just take them, but with a $40 per child copay and a mountain of medical bills for my husband, I have a hard time justifying it if the doctor thinks it's a waste.

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I think this is what Jimmy B has been saying!  Ipi and radiation!

From today's article on MSNBC: "New Melanoma Treatment - a turning point against cancer?"

 http://vitals.msnbc.msn.com/_news/2012/03/07/10602724-new-melanoma-treatment-a-turning-point-against-cancer

Valerie Esposito, a 42-year-old mother of three, was taking ipilimumab for advanced melanoma and it wasn’t working very well. The cancer was spreading through her body.  One huge tumor, in fact, was pressing on her spine. To relieve the pressure, her doctors at Memorial Sloan Kettering Cancer Center in New York radiated the lump. Within weeks, other tumors throughout her body started shrinking dramatically. 

Our experience with melanoma: http://emandmichael.wordpress.com/

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edamaser's picture
Replies 7
Last reply 3/12/2012 - 6:25pm

Hi All,

I have metastatic Ocular Melanoma, and have been fighting mets in the liver for 9 years.  I have mets in the liver, lungs, peritoneum, abdominal wall, and more. 

I would like to share with you something that has come up recently for me as a consequence of metastatic cancer that I never heard of before. The condition is hypercalcemia--too much calcium in the blood. In my case, I ended up in the hospital for 3 days while they figured out the situation and what to do about it. They think it is caused by the melanoma itself, which releases some substance that encourages calcium to be leached out of my bones. For anybody this is pretty serious, but for an old lady like me, it's scary. I will end up getting zometa, which only will slow down the leaching. Nothing can replace the calcium already leached out. Be sure to note that I do not have any bone mets, if my hypercalcemia is caused by cancer, it is all soft tissue cancer.

They checked out and rejected the most obvious cause, parathyroid involvement, and probably other possible causes, but settled on cancer as the default hypothesis.

The possible symptoms of hypercalcemia are wide-ranging: for e.g., confusion, memory loss, constipation, abdominal pain, kidney stones, etc. etc. The condition of hypercalcemia is discovered by a simple blood test.

Has anyone encountered hypercalcemia due to cancer before? 

Esther

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Shelby - MRF's picture
Replies 1
Last reply 3/7/2012 - 7:10pm
Replies by: KRob

I'd like to compile a list of melanoma support groups by state and make it available as a patient resource on our website.  If anyone has any information about a melanoma support group in your area or state, will you please provide me with some information on the group?  All information can be sent to smoneer@melanoma.org or education@melanoma.org.  Thank you in advance!

Shelby - MRF Health Educator

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momof4's picture
Replies 21
Last reply 10/27/2013 - 6:55pm

So went to the dermatologist yesterday for a black mole looking spot under my nail.  Long story short thought it was a bruise, had it since 2008, always had nail polish over it and didn't pay any attention to it.  I am having surgery and biopsy on Friday and I am in disbelief of this whole situtation. I never even knew this existed.  I had been to the derm before to have moles removed, all the while this was on my toe and I wasn't paying attention to it.  Anyways I was wondering if there are any stories of of others who have this.  I am 35 yr old white female and it looks as if this is pretty rare for my demographic. I am trying to stay away from studies I am reading because I have read the 5 year survival rate was only 40%  in subungal melanomas on the toes. Any insights? Thanks in advance :)

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So went to the dermatologist yesterday for a black mole looking spot under my nail.  Long story short thought it was a bruise, had it since 2008, always had nail polish over it and didn't pay any attention to it.  I am having surgery and biopsy on Friday and I am in disbelief of this whole situtation. I never even knew this existed.  I had been to the derm before to have moles removed, all the while this was on my toe and I wasn't paying attention to it.  Anyways I was wondering if there are any stories of of others who have this.  I am 35 yr old white female and it looks as if this is pretty rare for my demographic. I am trying to stay away from studies I am reading because I have read the 5 year survival rate was only 40%  in subungal melanomas on the toes. Any insights? Thanks in advance :)

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Sharon's picture
Replies 3
Last reply 1/29/2013 - 9:22am
Replies by: Annemarie, Mandi0280

My husband had his last treatment at least that's what we expect yesterday. He will see the doctor again in three weeks don't know for sure what they will say at that time.  We have been very thankful that so far diarrhea and some stomach discomfort with some bleeding (but that was all handled with some acid reducer) is all the side effects he has had. We value this sight for all the information so many of you have given lets all continue to pray for one another. 

God, Family, Friends and Dogs ~ it's all that really matters!

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himynameiskevin's picture
Replies 8
Last reply 3/7/2012 - 7:13pm

I finished two rounds of SRS yesterday and today, to hopefully clear up my brain. Everything treatable has been treated, anything lingering, if anything, are too small to do anything about right now anyway, the additional noted "spots" are no bigger than 1mm or so and although unlikely, the doctors and I will continue to hope they’re just blood vessels or something that won’t show up in a future MRI.

I received an unexpected phone call today and it turns out my prescription for the Zelboraf has been approved, processed, shipped and I should be able to pick it up at 1pm tomorrow, not in two weeks as was expected and planned. So this is great news. Relieving. :) As with anything, I know there’s no guarantee it will work, or how it will benefit me... how soon, or for how long, what side effects I’ll experience. But I’ll be doing something that may work, something I may benefit from, maybe quickly, for a long time, with minimal side effects. It's something proactive I've been waiting two months for, and a step in a direction that could potentially save my life. So I feel good about that. I just have to stay focused, and continue to plan, hope, pray for the best possible outcome. Thank you all for being by my side through all of this. Here's to tomorrow and the next leg of the journey. -Kevin

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Hi,

I am pleased to announce my new practice location. I will officially be seeing
patients beginning May 1 but will see patients on a case by case basis if it is
medically important to be seen before then. Please feel free to forward my
contact information to anyone who needs to reach me.

Please request a copy of your medical records from The Angeles Clinic and they
can then be transfered to The Beverly Hills Cancer Center's state of the art
electronic medical record. The Beverly Hills Cancer Center(BHCC) can help
facilitate this for you. The BHCC is 1 stop shopping with patient care, imaging
including MRI, PETCT, Breast MRI, bone scans etc., a beautiful infusion center
for chemotherapy, radiation oncology, surgical oncology, full lab, research
clnical trials, psychosocial support and nutrition. A more formal letter will
come soon but I know many of you have been waiting to see me for some time. I
would be honored to resume your care.

I look forward to reconnecting with you soon.

Warmest regards,

Steven

Steven J. O'Day MD
Director, The Los Angeles Skin Cancer Institute
Director, Clinical Research
The Beverly Hills Cancer Center
8900 Wilshire Blvd
Beverly Hills CA 90211
310-432-8900
soday@bhcancercenter.com
Clinical Associate Professor of Medicine USC
Adjunct Professor, John Wayne Cancer Institute

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Phyllis in IA's picture
Replies 9
Last reply 5/25/2012 - 9:15am

Just wanted to post this info to show that there is hope, even when the prognosis looks pretty grim.  My husband was originally diagnosed in 1985.  The primary was removed by our small-town general surgeon, who said the margins were clear so not to worry.  We went on our merry way, thinking this was no big deal.  Then in November of 1998, 35 nodes were removed from his armpit, and all 35 were positive for melanoma.  A PET scan revealed numerous more enlarged nodes in the supraclavicular region, and altogether he had nearly 60 positive nodes.  He went on to do 4 rounds of biochemo, and had a complete response.  (All 24 nodes removed between rounds 2 and 3 contained black pigment from the melanoma, but no viable cancer cells)  So as of February of this year, we are celebrating 13 years of NED!  We are so very thankful to have been so blessed with this time, which at one point did not seem likely to happen.  At original diagnosis, we had 3 small children, and we can now say we have together seen them graduate from college, have attended their weddings, and welcomed 4 grandchildren.  I just wish that everyone could have the same outcome, as I hate to see all the sadness and suffering, with young lives cut short and losing good people way too soon.  My desire in posting this is that I might give someone early in their journey a ray of hope that things can turn out well, even when the odds are against you. 

Blessings,

Phyllis

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yoopergirl's picture
Replies 8
Last reply 3/8/2012 - 11:53am

I called today and got in right away on Monday the 12th, will be seen by a melanoma specialist who has treated patients with ipi. Will have to travel 6 hours to get there but I am more at peace now with this decision. The Carbon Cancer center at UW Madison Wi. I could have gotten in on Thursday but need to get all my medical recods from 3 centers. Thanks to all on this board for all the good advice so far. will let you know how it goes when we get home.

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Replies by: triciad, lhaley, Lisa13

Hi Everyone,

I just wanted to know who started ipi after finishing gamma knife?  I know Kyle is one of the people, so I wanted to know if there is anyone else?  I havn't had any steroids and I don't want to take any as I know it could mess up the ipi.  I might have to though, cause I do feel a bit of weakness in my right hand and it's quite possible it's the edema and I don't ever know if the ipi is causing inflammation.  I'm really hoping that ipi this time around keeps any other tumours growing and thankfully, I'm going every 2 months.

Thanks,

Lisa

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

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Hi Everyone,

I just wanted to know who started ipi after finishing gamma knife?  I know Kyle is one of the people, so I wanted to know if there is anyone else?  I havn't had any steroids and I don't want to take any as I know it could mess up the ipi.  I might have to though, cause I do feel a bit of weakness in my right hand and it's quite possible it's the edema and I don't ever know if the ipi is causing inflammation.  I'm really hoping that ipi this time around keeps any other tumours growing and thankfully, I'm going every 2 months.

Thanks,

Lisa

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

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jim Breitfeller's picture
Replies 3
Last reply 3/27/2012 - 3:51am

Boots,

HLA_A2 exclusion/inclusion  is 

The human leukocyte antigen (HLA) test, also known as HLA typing or tissue typing, identifies antigens on the white blood cells (WBCs) T-cells  that determine tissue compatibility.The  peptide-based vaccines are produced with HLA-02 petides/ antigens. So to be able to benefit from this type of therapy, your T-cells must have HLA-02 type.  are produced from

 

Jimmy B

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