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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kellie1979's picture
Replies 10
Last reply 11/16/2010 - 7:06am

I posted earlier this week that I had not got my pathology reports back yet from the doctor and was afraid of the unknown.  Well I got the phone call today at work that I do have Melanoma.  They want to schedule for me to have surgery to remove the area on my back, and to have tests done to assure that it hasn't spread.  I am going to go to a different doctor, I called them today and they said once they recieve the pathology from my current doctor then they will call me next week to schedule my surgery.  I still don't know the depth or anything, my doctors office didn't even know.  The pathologist called them and told them that it is Melanoma so that they could call me and let me know before the weekend.  Any advice on how to get through this from here would be great.  I am trying not to worry and hoping that it hasn't spread but every time I look at other moles that have changed recently I just worry more.  The current doctor said I need to have a chest x-ray is this standard procedure after being diagnosed?

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Carrie's picture
Replies 8
Last reply 11/17/2010 - 9:45am

It's been a while since I have posted on here.  Here is a little background on my family...My mom was diagnosed with MM 3 1/2 years ago with four primary melanomas (deepest one had her staged at IIC).  She moved to Stage IIIB after several intransit mets were removed near the site of one of her primaries.  She has been NED for 2 1/2 years and is doing great!  Six months after my mom's originial MM diagnosis, my sister was diagnosed with MM with two primaries.  Fortunately, she is staged at IA.  She has been NED since her diagnosis.  Doctors have suggested there is a good possibility of our family having the familial atypical multiple mole melanoma syndrome.  We have not done genetic testing.

With that being said, I have been closely monitored by my dermatologist twice a year for skin checks.  I have a number of biopsies done with 3-4 moles being mildly to moderately atypical.  I just recently had a mole removed from my upper chest area.  My derm called me today with the results.  That mole was moderately atypical, however, the mole also had some characteristics that melanomas tend to have.  She started telling me what those characteristics were, but she immediately lost me on that.  On Monday, I'm going to get her to fax me a copy of the path report.  The following week, I'm going for a re-excision. 

I was wondering, is this normal?  She said none of my other moles that were atypical had these characteristics.  Should I request to have another pathologist look at the biopsy?  I have always thought that an atypical mole was atypical and melanoma was melanoma.  She has really confused me!  Any advice would be appreciated!

Thanks,

Carrie

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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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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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Wendi Lynn's picture
Replies 10
Last reply 11/15/2010 - 6:23pm
Replies by: Anonymous, LBN, Napa K, Wendi Lynn, Jan in OC, Kim K, Fen

Hi All!

I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me.  The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski.  Has anyone worked with any of these doctors?  I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything.   Just wondering if anyone has experience with these doctors....

Thanks in advance!

Wendi

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/30/2011 - 5:40pm

Hi,

I'am 31 years old, living in France. Last september I was diagnosed a melanoma on my back, 4,01 mm, not ulcerated, 2 mitosis. So from one day to another, I started learning a lexicography I have never heard before.

My PET Scan was clear, as well as the ecography. Then I had a surgery for the Sentinal node biopsy. And it came negative, so it's clear as well.

The dermatologist told me last week that I am in Stage II B (just for 0,1 mm I guess, otherwise it would be stage II A). And she suggest me to take Interferon three times a week for 18 months. Another dermatologist I called, told me that the use of interferon is controversial, and that I should think it well because of the side-effects.

I know that is a personal decision and that is quite difficult to generalize the side effects. As an amateur in melanoma, I will appreciate if you guys, can help me to make myself clear. Thanks,

Gabriel

 

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ShariC's picture
Replies 10
Last reply 10/27/2011 - 8:57am

Hi All - I just wanted to check in with the board and say that I've finished my first round of bio-chem.  Brutal!  In fact, I'm pretty scared to go back.  I'm scheduled for 4 rounds with surgery to remove a small tumor in between rounds 2 and 3.  I so much appreciate reading this board, but it also scares me so much.  Losing people at 20, brain mets, etc...I just can't believe this road ahead.  Thanks for all the support, advice and kindness.  - Shari IIIb/c in Nebraska

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Jim in Denver's picture
Replies 13
Last reply 11/12/2010 - 10:26pm

BMY is changing the name in anticpation of FDA approval.  There will be a meeting on Dec 2.  Here is an excerpt about the meeting  and a link to the FDA site for more information:

Public Participation Information

Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee.

  • Written submissions may be made to the contact person on or before November 16, 2010.

http://www.fda.gov/AdvisoryCommittees/Calendar/ucm230348.htm

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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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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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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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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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