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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emilypen's picture
Replies 7
Last reply 11/12/2010 - 8:21pm

Normally when my cell phone rings at 8:15am in the morning, I expect to hear not so good news as my family and friends know we're not morning people.

But today it was my husbands oncologist, calling to tell us that they got all the final measurements from the latest CT scan and his tumours have shrunk by 12%, after only 7 weeks on the study drugs.

(http://clinicaltrials.gov/ct2/show/NCT01155453)

Earlier this week we were told there had been no change.... which was great as well as his disease had been really aggressive. So this was just icing on the cake.

Don't usually like to start my day crying but today they were happy tears.

Have a great weekend all.

 

Emily

Husband Stage IV, bone & soft tissue mets

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Last night, pathology confirmed that the lymph node removed from my neck Monday tested positive for melanoma (unknown primary).  All other pathology and my PET-CT scan are clean.

I will contact an oncologist today, but from everything I read and what my doctor says, my next step is a left posterior neck lymphadenectomy.  My doctor suggested that I would be "knocked on my back" for about a week with one more week recovery before I could return to work and activities of daily living.  I do better when I know what to anticipate.  Please help me.

I'm sure some of you have had this procedure.  How did it go for you?  What was recovery like? How long did it take to get back to a "normal" daily routine, and what was different when you did so?   What surprised you about the process?  What helped you get through it?

Thanks for your help.  I've been reading this board since Monday, and it's a wonderful community.

Stay strong, everyone.

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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Suzan AB's picture
Replies 8
Last reply 11/12/2010 - 1:48am
Replies by: Suzan AB, Jenjen, Jim in Denver, Cynthia C, Charlie S, Anonymous

I have been away for some time, livin life and working to pay previous medical testing and the like.  Received some sobering news that I have some nodes/lesions/mets (? I don't know the proper terms) in my right lung.  I am  BRAF: exon 15 V600K mutation.   Please share treatments that have kept the Stage IV Warriors on the War Path.

My best to all with biggest of hugs and loads of blessings from above!  Most importantly...Many Thanks to You All Who Brave the Waters of Fear and Keep Us Informed!!!

Suzan AB  Stage IVa...well maybe Stage IVb now...Purple Painted Warrior Against Melanoma!  With a splash of bright Yellow!

Life is great, PTL!!!

Presently...One Day At A Time.

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Vermont_Donna's picture
Replies 8
Last reply 11/12/2010 - 1:33am

Hi everyone,

After a teary week and looking at all my options and feeling so exhausted and with the unhealed leg wound, and now starting IPI next week, I have decided to resign from my job as a school based clinician. I see 30 kids a week in three kids and it was just too much. I am not taking care of myself nd now my melanoma is back, two months after I completed radiation. Because I havent been working a year (only went back 6 months ago) I am not eligible for FMLA. I will however just resign and will get short term disability from work and then long term disability and I will get my SSDI back too. I will pay to COBRA my health insurance for me and my two kids in college.

Ok questions...... #1.what are peoples main side effects to the IPI? I am getting four infusions to start, three weeks apart. Is this what others have done?

Question 2, My tumor was analyzed and I am BRAF negative. What does this mean for me (or not mean)?? Does it rule out certain treatments or trials??

Thanks so much everyone,

 Vermont _Donna, stage 3a, post SNB, WLE, 11 months of low dose interferon, 7 months of Leukine, ILP at Mass General in Boston, two rounds or radiation, and numerous surgeries and hospitalizations for cellulitis infections, and now left with fairly severe right leg and foot neuropathy. Oh and on lots of drugs.

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kellie1979's picture
Replies 7
Last reply 11/11/2010 - 11:00pm

I went to a dermatologist for a spot on my leg that was hurting....luckily it was only a cyst.  However, she noticed that one of my moles was concerning so she removed it and took a quick look at my back and removed two more.  I am only 31 and never even thought that I needed to worry about my moles yet.  They came back abnormal, I went in for what I thought was a full body check.  The PA did NOT check my whole body (I wish I had known at that time what a full body check was supposed to be) she removed 5 more, 3 from my back, one from my stomach and another one from my leg.  Four of those came back abnormal, the other one the doctor sent back to confirm that to him it appears to be Melanoma.  I have since met with a cancer genetists who thinks I need to be tested for Dysplastic Nevi Syndrome due to my family history of cancer and the amount of moles that I have.

Well anyways, it has been over three weeks since I found out that it may be Melanoma.  Does it always take this long to find out?  I am trying not to worry too much but I seriously have not been sleeping well at all and am about at my breaking point.  Many people in my life do not understand why I am concerned as most of them do not understand there is a difference between Melanoma and the other types of skin cancer that are not as threatening.

I already know that once my pathology comes back (hopefully tomorrow) I am going to go to a different dermatologist as I keep finding moles that look similar to the ones that were removed.  And I don't know if I am just paranoid now but I swear everytime I look in the mirror I find a new mole that I didn't know I had.  I am also worried about my daughter, she is 7 and has had several moles appear lately.  Is this normal or should I be worried about what this means for her?

I am sorry for the rambling, I just don't know what to expect and am not finding much support in my personal life.

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/11/2010 - 6:42pm
Replies by: Janner, Brandi, Jim M.

I am 39 yo female with stage 1 diagnosed 6 years ago. Whithin a past 3-4 days I started to feel pressuse in my chest (around sternum) and I have now burning sensation which starts in the lower part of sternum, then moves up almost to the neck and then goes down again. I don't feel the pressure any more and probably burp more that ususally and have the hot feeling in the throat. I have never had such feeling before. Does it sound like a heartburn? I am not sure because I can not distinguish whether it is behind the sternum, in the sternum or this is skin feeling??? I am so worried. Any idea what it could be???? Thanks!

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I am 39 yo female with stage 1 diagnosed 6 years ago. Whithin a past 3-4 days I started to feel pressuse in my chest (around sternum) and I have now burning sensation which starts in the lower part of sternum, then moves up almost to the neck and then goes down again. I don't feel the pressure any more and probably burp more that ususally and have the hot feeling in the throat. I have never had such feeling before. Does it sound like a heartburn? I am not sure because I can not distinguish whether it is behind the sternum, in the sternum or this is skin feeling??? I am so worried. Any idea what it could be???? Thanks!

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washoegal's picture
Replies 6
Last reply 11/11/2010 - 8:27am

I was just browsing some publications my Onc had done and come across an older one that might be of interest to some of you.  The abstract is scientific but from what I can gather, it says you've got something extra going for you and it should be studied!  A little good news anyway.

http://www.ncbi.nlm.nih.gov/pubmed/18235114

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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Hello All,

I've attended the past few symposiums presented by the MFNE and found them excellent resources. 

Jerry from Cape Cod.

An Evening with the Experts

A presentation of the latest in melanoma treatment and research

An opportunity for education, discussion & connection for patients,
survivors, families & friends

Tuesday, November 16, 6:30 – 9:00 pm

Dana Farber Cancer Institute
Jimmy Fund Auditorium
35 Binney Street, Boston, MA

Speakers:
F. Stephen Hodi, MD, Clinical Director, Melanoma Program, Dana Farber Cancer Institute
Donald P. Lawrence, MD, Clinical Director, Center for Melanoma, Mass General Hospital
Anand Mohadevan, MD, Radiation Oncology, Beth Israel Deaconess Medical Center
 

    Dana Farber Cancer Institute
    Jimmy Fund Auditorium
    35 Binney Street, Boston, MA

RSVP:
Melanoma Foundation of New England at (978) 371-5613 or tsignet@mfne.org

Services:
Free Admission, Refreshments, Free Parking (in the Smith Building at 1 Jimmy Fund Way)

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Nancy's picture
Replies 20
Last reply 11/10/2010 - 9:57pm

Buddy, my dear husbacd of 43 years, passed  away today.

He really fought the melanoma battle.  The journey has been a long one, some ups, some downs, but we always thought we would win.

Winning wasn't in the cards this time,  Anyone so desiring can man

 

H

 

 

 

 

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emilypen's picture
Replies 3
Last reply 11/10/2010 - 9:50pm
Replies by: emilypen, Anonymous, lhaley

Hi All,

Just wanted to let you all know the good news! After 7 weeks on the trial drugs ( Mek & P13k) my husbands  scan results show "stable" disease. The measurements show that the tumours and bone lesions have experienced absolutely no growth!

We were hoping for a reduction in size but as he feels so great and and its only been 7 weeks we're happy. Hopefully in the next scans in 2 months will show a reduction.

Would love to hear how others on the Mek inhibitor have faired with their scans? was reduction immeadiate or did it take time?

 

thanks,

 

Emily

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Rocklove's picture
Replies 14
Last reply 11/10/2010 - 7:07pm

 

I did the 6 rounds of Bio-Chemo things were shrinking well, then went on the maintenance part, did 2 rounds of maintenance then scans showed developed new tumors in the liver. There are multiple new lesions laterally in the liver in segment 8 there are new lesions in segment 5 and 6 as well. Existing tumors were stable or shrinking a little.

Dr. Weber advised I go on the PD-1 Antibody Combo Trial. There will not be any openings until 4 weeks pass, so I am getting worried about waiting so long before I can jump into treatment.

My HLA Type is HLA2 Positive so Dr. Weber said I have good options. Asked if I could go on IPI first so I could get started on something quicker, he said I would not qualify on the PD-1 trial if IPI was first, but could do IPI  if the PD-1 trial did not work.

Moffit sent slides and bloodwork to see what I am compatible with as far as BRAF & Mek inhibitor trials I won't get results for about 3 weeks.

A friend found the MRI Guided Laser Ablation trial and I sent the contact a msg to see if I would qualify http://www.mayoclinic.org/news2010-jax/6006.html

Looking for any comments or advice that I should consider while I wait.

Thanks,

Rocky (Stage IV Liver Mets)

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Brandi's picture
Replies 2
Last reply 11/10/2010 - 5:29pm
Replies by: Brandi, glewis923

I don't know if anyone on here is a steeler fan but here in Pa. I think everyone is. Anyway the reason I bring this up is because coach Bill Cowher's wife died of skin cancer about a year ago (I think). They did not release what kind of skin ca but I saw all the posts about mel not getting the attention it deserves and I thought of this story. Bill will actually be on the news tonight talking about living without Kaye. I too believe this deadly form of cancer needs more attention. I was actually thinking of ways to bring it into the public spotlight. We need people to understand what this is and how bad it can be if left to run rampid. I just thought I would let everyone know of another famous person who died from skin ca. Maybe just maybe it will be brought more into the main stream spotlight. It's a sad way for mel to get attention though. I don't wish it on anyone.

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DCMF's picture
Replies 4
Last reply 11/10/2010 - 9:25am
Replies by: DCMF, Anonymous, Becky, 2atlascedars

We are an Ontario charity who are looking for young people who are suffering from, or who have been affected by, melanoma to appear in an educational video.  The David Cornfield Melanoma Fund was established in 2007 and is devoted to saving lives from melanoma by promoting awareness of this disease.  The Fund was created in loving memory of David Cornfield, who passed away from melanoma in December 2005 at the age of 32.  David was my step-brother and left behind a legacy, including a young son. 

We are in the process of making an educational video aimed at teaching youth and their caregivers about preventing and detecting melanoma. We plan to distribute the video to summer camps, schools and other stakeholders.  We have hired a dynamic well-known production company, Evidently, to help us shoot this video.  We are moving things forward very quickly are looking for actual patients (preferably younger people, such as teenagers or young adults) or family members to appear in our video.

 The video will be shot in Toronto hopefully around the end of this month. We are not in a position to pay for the appearance but would, of course, cover reasonable expenses i.e. parking.
 
If you or someone you know are able to assist, that would be wonderful.    Kindly contact me on this Board post or by email at david.cornfield.melanoma.fund@gmail.com and I can give you some more information.
 
Thank you
Elyse
  

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jenniperry's picture
Replies 8
Last reply 11/9/2010 - 10:50pm

Husband taken off trial and off chemo. It worked to reduce all tumors and remove the small lung tumors and all subcutaneous are gone. Still has 2 in the liver, one 3.1cm and one 1.8cm. Dr. said we will wait until January and re-scan because he is no longer a candidate for any trial nor chemo. He said waiting 3 months was within guidelines and since they haven't grown or shrunk in two months he feels safe doing so. I feel like I'm going nuts.

Cherish every day you have.

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