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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Hi Everyone.  Anyone have any thoughts or have been taking Curcumin for Melanoma.  I speak to so many patients that believe it has helped their Melanoma treatment.   What do you think. ?

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Hi,

We live in Wales, United Kingdom, my husband is Stage IV and 8 weeks ago finished 8 rounds of dacarbazine with the trial drug E7080, he is currently on a maintanance programme with the E7080.

In the UK we only normally give 6 rounds of Dacarbazine but as this is an American and Japanese trial he has had 8 rounds, he tollerated everything really well for the past week has had debilitating fatigue and pins and needles in his feet.  he is being monitored closely and is having a weeks break from the E7080. 

He has had really good results and is now stable but this fatigue and the pins and needles is really getting him down.

I wondered as we in the Uk are not aware of the side effects of 8 doses of dacarbazine has anyone out there had any similar symptoms, if so any help or advise would be appreciated!

Many thanks x

 

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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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Webbie73's picture
Replies 4
Last reply 4/27/2012 - 11:16pm

As we all know as melanoma patients sunscreen is a must for us. I have been using sunscreen for around 30 years. This past weekend I was in Washington DC walking around. I tried a new improved sunscreen on my upper chest and the back of my neck. The areas that were exposed. To my surprised I had a photo allergic reaction to the chemicals in the sunscreen. After a trip to the dermatologist yesterday I am now using a steroid cream and can not use any sunscreen ion those areas for at least a week.

I just wanted to bring the subject up for anyone else who may have an allergy to sunscreen. Now I have to start trying to find a sunscreen that works for me. LOL the doctor suggested "baby" sunscreen and keep to physical sunscreens.

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betsy's picture
Replies 2
Last reply 4/27/2012 - 10:00pm
Replies by: gabsound, JuleFL

We're celebrating 3 years melanoma free! Ron had a deep and large tumor removed in his back, and total left inguinal lymph node dissection. The lymph nodes were matted, so we really didn't know how many were involved. He did interferon for 10 months. There have been some issues with pain and lymphedema, but no signs of recurrence. We are so blessed.

For 2 years I could barely leave this site. I watched, asked questions, and posted sometimes. It was an invaluable source of information, help, and support for us as we scrambled to learn. Thanks to those of you that continue to be there for all of us that are faced with gathering information on a subject we really don't want to have to learn about.

Ou prayers will continue for those facing this disease.

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Columbus's picture
Replies 25
Last reply 5/10/2012 - 11:27pm

 

"Boots"
March 18, 1957 - March 30, 2012    "Boot2aboot"

Many patients on this site knew our sister, Choel Evans, affectionately as "Boots."  I'm sad to say that Choel passed away only days past her 55th birthday.   She became such an advocate for melanoma research this past year and she did all that she could to live despite the pain and suffering she endured every day.   She was diagnosed a year ago in March.  It was a very rough year.

To those of you sharing your experience here on this site, helping others to  navigate the clinical trials, or providing the valuable understanding, kindness and love...thank you.  Choel found a family of friends here.  She was so grateful to folks like Jimmy B and others.  She would call me in tears whenever a melanoma.org friend passed away.  You all became important loving friends to my sister, Boots.  

Best wishes to you for a successful & complete recovery!

Amy Buckley

 

file://localhost/Users/amybuckley/Pictures/iPhoto%20Library/Originals/2012/Apr%203,%202012/558320.jpg
 
Choel P. Evans, 55, of Galion, passed away on Mar.30, 2012 at Hospice House of North Central Ohio in Ashland, after a yearlong battle with cancer.  

Born Mar. 18, 1957 in Galion, she was the daughter of Anne J. Evans and the late Charles O. Evans. Choel graduated in 1975 from Galion High School where she enjoyed Miriam Sayre's Thespian class, playing the flute in concert band and showing her horse, Dusty, at the county fair. Many of Choel's activities in high school became lifelong passions for her especially acting, art, music and filmmaking. 

Choel earned her Bachelor of Fine Arts degree from the Columbus College of Art & Design and was one of the local Galion artists chosen to depict the venerable manors & churches of Galion for the 1976 Bicentennial. Several gift shops in town sold greeting cards with her pencil sketches of such classics like Brownella Cottage, Howard House and the Hosford-Kelly House. Her creative instincts and artistic talent carried through in her professional career as well. Choel was a filmmaker, location scout, set decorator and props master in Feature Film, Commercials and Theater. 

She was a member of the International Alliance of Theatrical Stage Employees (IATSE), local 209, and is credited with such films as "Traffic," and stage productions at the Ohio and Palace Theaters in Columbus. Many have seen Choel's work on commercials for Wendy's, Saks Fifth Avenue and The Limited. 

Choel's passion for the environment, wildlife, gardening, yoga and all things outdoors continued until her death. She was a regular hiker at Mohican, Lowe-Volk Park and enjoyed nurturing injured wildlife back to good health. She also volunteered time with the wildlife sanctuary in Crawford County. 

She is survived by her mother, Anne J. Evans of Galion; her brother, John O. (Karen) Evans of Farmington Hills, Mich. and her sister, Amy (Robert) Buckley of Los Gatos, Calif.; five nieces, Alissa, Lindsey, Kirsten and Teagan Evans and McKenna Buckley and her aunt, Mary Judkins of Peoria, Ill. Choel is also survived by several cousins that helped her during this difficult year.

Choel's family will receive friends from 3 to 4 p.m. Sunday, Apr. 22, 2012 at the home of Anne Evans where a memorial service will be held for friends and family at 4 p.m. Sunday, Apr. 22 officiated by Dr. Dan Turner. A memorial in Choel's honor will be placed at the Evans' family plot in Fairmont Cemetery, Jackson, Ohio. 

Memorial tributes in Choel's memory may be made to the Melanoma Research Foundation, P.O. Box 759329, Baltimore, MD 21275-9329 or on www.melanoma.org.

Choel and her family were most appreciative for all the prayers and cheerful cards sent by neighbors, family, friends and members of the Community Christian Church of Galion.  

 

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acyr's picture
Replies 6
Last reply 4/30/2012 - 7:40am

Hi all,

I has been some time since I have posted on this website that was so helpful in supporting me through my last round of this disease.  I have since been up to my elbows working to get our Canadian organization off the ground.  I would say we have made great progress www.melanomanetwork.ca

There is a patient who is looking for help.  She is in her 40's, has spread of the disease widely with high concentration in the liver.  Was wondering what any of you might suggest for clinical trials that have been effective on liver mets.  Is anyone still doing hepatic infusion with any success?  Have any of you had successful treatment or regression in the liver?  I believe she has failed Zelboraf (vemurafenib) and is starting Yervoy tomorrow - but Yervoy may be too slow to respond in light of her rapid progression.  Any thoughts are very welcome.  Wishing you all a bright tomorrow.

Annette IIIB

Melanoma Network of Canada

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Just got word this morning that Kaiser has approved my going to UCSF to participate in the BRAF/MEK clinical trial!  I realized that most of my "angst" could have been avoided if my oncologist supported my participation in the trial. Other Kaiser members on this board just got referred over with no problem because their Kaiser oncologist supported their decision to participate.

Next steps for me are going through the pre-testing to qualify for the trial. I know I am BRAF positive from an earlier test, but because it was done before the current standards it needs to be repeated. Scans, lab work, eye exam, vist to dermatologist and oncologist all in the next week or so. I have two more weeks to finish the "wash out" of my previous therapy, Nexavar, so the pre-qualification stuff should be completed in time for me to start the trial on May 9 or so.

Thanks to everyone on this board for your suggestions and encouragement. I will be looking for a new oncologist once the dust settles. I was going to change health plans but now I realize that if I just get the right doc I can manage, at least for now, within the Kaiser system. Since my care will be basically under Dr. Daud at UCSF during the trial, I will have access to a great melanoma specialist without having to change health plans right now.

Keep on fighting!

Eileen L

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Lisa13's picture
Replies 16
Last reply 4/30/2012 - 9:15am

I just finished my last ipi reinduction.  I'm had a brain tumour, but lately have had eye problems.  Mine is basically blury and colour. Are these normal problems with people who've had ipi? What perscriptio do they give you? 

So far, the large brain tumour with blood is stil there and hasn't moved in 13 days.  I'm off to Florida tomorrow with so mucy perscriptions just in case. The brain tumour hasn't moved, so I'm hopefully, I want to be abe to enjoy the trip.  More than anything, it's the eye problems.

Lisa

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

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Hi again,
Yesterday Dr.Halpern froze everything on my scalp, face, neck and in my ear. Tonight I start applying Aldera again. He said that there is a risk in the ear because we could be damaging the cartlidge, but that the benefits outweigh the risks. When I asked what happens if the cartlidge is damaged and he said we'd deal w/it, I didn't have the energy or desire to question him further. Not being an informed patient is not my style. I'll ask next time.
He confirmed that the mel on my "prior-irradiated" scalp are great size for new cohort of BMS PD1 trial--too bad they only want virgin skin.
He is leaving one met under my chin alone--maybe it will grow a bit, especially that my 4 th ipi infusion, if I get it, is on hold.
Could be way worse as all u warriors have shown me, so I'm working on putting more gratitude in my attitude.
Have a good day,
karen

Don't Stop Believing

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I am continuing my battle with Kaiser to get approval for participation in the Genentech BRAF/MEK trial. I just found out some information that makes me feel a bit better about all of this.

I am a Kaiser member through a Medicare Advantage Plan. Medicare regulations states that when you participate in a trial at a Medicare approved facility, the facility bills Medicare directly. If it is an outpatient service, Medicare will pay 80% of the costs as long as the service is something Medicare would usually cover. The Medicare Advantage plan may chose to cover the other 20%, and you need to go through whatever their approval process is for going to an outside service.

For me, this is fantastic since I was looking at potentially paying out of pocket for the first two months of this trial for services not covered by the study. The items that weren't covered included a PET/CT scan, which is big $$$! Twenty percent of big $$$ sounds better than 100% of big $$$! My stress level around this approval just plummeted!!!!

I had an Alice in Wonderland type of day with pushing the approval process forward, I had a health plan representative tell me the health plan never pays for any expenses related to a trial, which is totally against California law! Then I had my doctor's nurse confirm that he is not going to advocate for me with the health plan approval process because he just doesn't support participation in Phase I clinical trials! So I am trying to get to speak to the physician who is reviewing the request for the health plan to make my case. All this is way more than anybody should have to do just to get approval for a covered service.

That's it for now. Take care everyone, and keep up the good fight!

Eileen L

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Hi all. I am wondering if anyone has heard of the term Post lymph node dissection pain syndrome? 

All the research i find is for breast cancer patients, but this research states that there are tons of people with this issue. Since my doctors are always trying to figure out why im still having such bad pain year after my surgeries, im thinking this could be a great topic at my next appointment. Just wanted to know if anyone else has heard of this or is experiencing severe chronic pain months or years after having their nodes removed. 

 

thanks!

 

Dj

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Angela C's picture
Replies 13
Last reply 4/29/2012 - 11:30am

Hi everyone.

I got home yesterday after three weeks at NIH for IL-12 TIL treatment. Everything went really well. I had a week of chemo, followed by cell infusion then about two weeks in-patient while they monitored me for any side effects. I had a lot of fevers, some pretty high - 103-104. The doctors think things look good and they were able to see levels of IL-12 and interferons in my blood. My TIL cells were very active and grew extremely well in the lab. They are supposed to continue to multiply in my body and release IL-12 as they encounter Melanoma cells and kill them. I go back in about three weeks for my first follow up scans.

I'll let you guys know what scans show next month. I'm feeling very hopeful. They have seen results in almost all of the patients in the higher doses. I had one billion cells put back in my body. I'm in the 9th cohort out of 12.

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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triciad's picture
Replies 3
Last reply 4/26/2012 - 9:36am
Replies by: triciad, vivian, lhaley

I am really confused and need any help or guidance you can offer!

In July, I found an intransit close to my original tumor (buttocks).  I went to my dermatologist who tried to excise, but it was too deep.  She sent me directly to surgeon.  The piece she got out was biopsied and came back melanoma.  I had surgery and did 6 weeks of radiation.

A couple of weeks ago, I found a similar bump.  I went to my dermatologist who told me she spoke with my oncologist and he said not to biopsy, go and get PET.  I got the PET.  My oncologist's PA called me the next morning to report the PET showed absolutely nothing...probably fatty tissue.  I was in shock because it was right between my 2 previous melanomas and felt exactly like the one in July.  I thought something wasn't right, but the temporary elation was wonderful. 

I just happened to have my regular checkup with my oncologist that afternoon, so I still went to see him.  He looked at it and said, "It's definitely melanoma and set up surgery with the surgeon".  So I did, and I had the surgery.  Path came back...melanoma.

Naturally, I'm bewildered.  How could the PET not show anything (path report says specimen was 3 x 1.5 x 1.3 cm)?  In addition, if I didn't have my regular check up, I would be walking around with this melanoma growing and growing inside of me!

I'm wondering, what would you do?  Do I say something to my oncologist on Monday about the "all clear message"?  I used to have such faith in the PET scan findings, but now, I'm not so sure.  Also, I don't know if it's time to get a new doctor? 

PLEASE give me your advice...what would you do?

Thank you so much for all of your help.  I've said it before and I'll say it again...it's my MPIP family who I trust!

Tricia

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triciad's picture
Replies 2
Last reply 4/25/2012 - 4:20pm
Replies by: triciad, Janner

Hi Everyone,

Well, here's my history. 

7/09 - first diagnosed...SNB, WLE - 3 nodes positive...groin area

10/09-10/10 - Full year interferon

7/11 - Intransit...same area...surgery to remove and 6 weeks radiation

4/12 - found another intransit...surgery...what's next?

So, I just got a copy of the pathology report.  It says, "Recurrent malignant melanoma, mulitlpe foci, focally present at the inked edge of the specimen.  Lymphovascular invasion is present."

It doesn't have anything about mitotic rate.  Also, never had "lymphovascular invasion present" mentioned before.  Please let me know if you know what this means...the good, the bad, and the ugly.

Thanks so much for your help.  I have an appointment with my surgeon tomorrow and oncologist on Monday, but I'd like to have some questions lined up.

Keeping you all in my prayers!

Tricia

 

 

                                            

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