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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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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Anonymous's picture
Anonymous
Replies 5
Last reply 3/13/2012 - 9:34am

Hi,

 

I have to travel over 180 miles round trip to my oncologist on a regular basis. With the cost of gas, we are going broke!

Does anyone know of any organization(s) that helps cancer patients pay for the cost of gas.

Thanks

Michael

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Luvmycuz's picture
Replies 2
Last reply 3/7/2012 - 7:39pm
Replies by: KRob, Lynn1962

My cousin was just diagnosed this week with metatastic melanoma, it traveled to her liver. We are devastated by this. She lives in NC and and I am twelve hours away in NY. I am hoping that someone can tell me what I can do to help her. As sad as I am I cannot imagine the pain she must be in and I want to do all that I can emotionally and educationally to support her.

Lifedoesnotrewind

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Luvmycuz's picture
Replies 4
Last reply 3/6/2012 - 3:11pm

My cousin was just diagnosed this week with metatastic melanoma, it traveled to her liver. We are devastated by this. She lives in NC and and I am twelve hours away in NY. I am hoping that someone can tell me what I can do to help her. As sad as I am I cannot imagine the pain she must be in and I want to do all that I can emotionally and educationally to support her.

Lifedoesnotrewind

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/6/2012 - 3:15pm

Hello everyone,

I am Stage 1 patient, almost 8 years post-diagnosis.
For 3 weeks now I have persistent sore throat and it scares me very much. I went to the PCP who did strep nest: negative. The ENT didn't find anything suspicious in the throat also when he used the mirror to look down to the larynx. However, he said that it could be acid reflux related because the entrance of my esophagus is raw and inflamed. He prescribed omeprazole. Well, after 1 week on omeprazole, it is not much better. I cannot locate the pain: sometimes it feels on one side on the throat, sometimes on another when I swallow. Have anyone experienced anything like that???? This sore throat drives me crazy. Thanks for listening.

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Lynn1962's picture
Replies 3
Last reply 3/20/2012 - 11:31pm

Well the right groin lymphenodectomy in January went well -- they took 15 out altogether, and the only one that was positive was the one original sentinel lobe....and that one had just a very minute number of micro mets. Currently have some mild lymphadema that is being address with massage and PT. Feeling great at this point, and went back to work yesterday!

Getting ready to start Sylatron next week, and was wondering if anyone could share their experiences and strategies for dealing with the side effects. Hopefully, I will be able to tolerate it long enough for it to be beneficial...

Also, for those of you who sit  and work at the computer all day, what worked best to keep the leg swelling down as far as seating, elevation, movement etc.?

Thanks! Although I don't post often, I do read the posts and I am truly inspired by the people on this board! It is a great resource!

Lynn

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ElaineLinn's picture
Replies 8
Last reply 3/9/2012 - 2:17pm

just wanted to give you all an update. Today is March 6, I have been in the hospital since friday having siezures. They found a 1 1/2 cm tumor on my brain that has to be removed on Wensday.  I am scared to death but I also know it is all in Gods hands.

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