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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My local paper just published an article about my journey.  Take a peek.  Hope to see many of you at the race.

God Bless.  

Robert

http://www.edhtelegraph.com/article/el-dorado-hills-resident-targeting-skin-cancer-awareness

The circumstances of our lives have as much power as we choose to give them. David McNally

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lrkg1234's picture
Replies 5
Last reply 4/29/2013 - 2:33pm

So, now I'm on the hunt for an anti-PD1 opening for Scott, just like everyone else. 

Of course I'm leaving lots of messages and waiting for phone calls back. I just called Chicago and Vanderbilt.  If I were lucky enough to find an opening does anyone happen to know what the washout periods are for Yervoy and Temodor?

If you are trying to get into a trial how long will they consider your scans valid before they want another?

Scott needs official scans for both the brain and the entire body in about 2 weeks and we are trying to time it right.  He had a kidney stone this past week and had an "unofficial " abdominal scan that showed the IPI to be partially effective, but not good enough.  Of course if the brain mets are not cleared up then trials are not an option.

We are traveling to MD Anderson in a few weeks and were going to wait and get him scanned there. They may have more ideas for treatment but, if there is an Anti PD-1 trial in the area that would be a better option.  It would be much more affordable to drive than fly. 

He has already had Dasatinib, IL-2, Yervoy and now Temodor.  I don't know what else there is.

This whole thing is stressful, but isn't it worse between treatments?  Deciding what route to take is mind bending.  So many things to think of when you are not thinking straight anyway.

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mamabet's picture
Replies 6
Last reply 4/29/2013 - 12:00pm
Replies by: saengery, mamabet, POW, Anonymous

Hello
I was diagnosed with melanoma in September of 2012. It has been a huge emotional challenge for me to remain positive despite my good prognosis. Tumour was 0.88mm, no ulceration, low or no mitosis. My Clark's level was IV, however, and that is what seems to be driving my negativity. Does my Clark's level move me from 1A to 1B? Also, I don't quite understand, despite trying to research it myself, how my stage can be good when my Clark's level is so high? To make matters worse, I am prone to cysts and every time a new one pops up I worry like crazy that its a melanoma growth.
Just to add, I am having another primary removed on May 8. I had this one back in September as well, but no doctor would even entertain it being removed, because they were so focused on the other obvious tumour. But this one has the same texture as the other one, and it is starting to change colour as well, so the oncologist is sure it's melanoma. I'm hoping for an in situ.
Anyway, thanks for listening. This has been a completely devastating diagnosis for me, despite my knowledge that it could be so much worse. Emotionally it has changed my life.

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Linny's picture
Replies 1
Last reply 4/29/2013 - 11:42am
Replies by: Janet Lee

Stage III, Unknown Primary; 1 positive node in left axilla

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kpcollins31's picture
Replies 35
Last reply 4/29/2013 - 11:16am

Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sep 2012 to remove a single infected lymph node in my upper left arm... they took a few sentinal nodes as well and they were all clear. I am seeing a melanoma specialist (Dr. John Stewart at Wake Forest Baptist Health) who does not really believe in scans, but he did plan to do another PET scan at the 1 year mark.

So my question is, how do you know if you have a problem? I feel great - I have started eating better and lost some weight. I hit the gym hard several times a week and feel stronger than I have in years. Does some physical symptom typically manifest itself if you become stage 4?  How many people cruise along thinking everything is great and then have some kind of routine scan to find out otherwise?   

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5374brian's picture
Replies 2
Last reply 4/29/2013 - 1:17am
Replies by: 5374brian, Phil S

My wife has completed 5 of 10 WBR treatments. After the 4th treatment she has experienced daily nausea and a few upset stomach. Is this a typical side effect? When does it subside? I know not everyone recacts the same but just checking on how others were effected? 

 

We have been presented a consent form to review for Randomized open lable Phase 3 trial of BMS-936558. The trial is 2 out of 3 will receive the BMS-936558 and the other the investigators choice of either dacarbazine, paclitaxel, carboplatin. Should we enter into a trial like this where it is randomized? Would there be benefit with the other if we dont receiver the BMS? 

Brief history my wife just completed he IPI April 2nd and had her follow up scans April 18th. We were told that the results from IPI were not good enough so they wanted to keep a treatment plan in front of us. 

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Bunmom's picture
Replies 3
Last reply 4/29/2013 - 12:33am

I'm 22 days post-op for complete axillary lymph node dissection, and my JP drain is still putting out 50-60 cc's per day. My surgeon was worried about infection and wanted it out last week, but I talked him into leaving it as I'm concerned about the output. I'm afraid that pulling it too soon will lead to a seroma or lymphedema. 

 

I've read on some breast cancer boards that people have had them in for up to 4 weeks, but I haven't seen anything beyond that. 

 

Did anyone here have theirs in a long time? 

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Replies by: Anonymous, Janner

Just diagnosed with Malignant Melanoma, pathology report states:

0.82mm, Clark's level III, 1 mitosis per mm2.  Type superficial spreading, no ulcerations, microsatellitosis, lymphvascular invasion, or regressions.  The juncional component is comprised of large cells arranges as irregular sized nests and individual units seen throughout all levels of the epidermis. The dermis contains similar nests and individual melanocytes with a dense lymphoplasmacellular infiltrate.  Elsewhere in dermis there is second population of nests of smaller melanocytes.

What does this mean?  Is that a fairly good prognosis?  Any help would be wonderful!  Thanks!

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Anonymous's picture
Replies 7
Last reply 4/28/2013 - 10:08pm
Replies by: Houston, POW, Anonymous, LynnLuc, jeffjohn78, Linny

My husband went to the dermatologist last week and was diagnosed with Melanoma on his shoulder by a dermatologist. The doc said it was .5mm and classified him as T1B. She said that someone from MD Anderson would be calling us next week to schedule an appointment to 'check his lymph nodes'. She also said that it was "dividing rapidly," but didn't give any other details.  We are both in our young 30's with small children and feel completely blind sided by the "C' word. We live in Houston and will be driving to the medical center here for treatment. Here are my questions:

1.) How do we get the pathology report (do we just ask?) and do we need it for ourselves?

2.) What can we expect at our first appointment?

3.) What questions should we ask? (I know there must be questions that you all wish you had asked the first time, so please let us know what they are.)

4.) The big one: IF it has spread to his lymph nodes or beyond, does that change the stage and how soon will we know?

 

Any help, suggestions, tips, thoughts are MUCH appreciated.

Thanks so much.

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Erinmay22's picture
Replies 17
Last reply 4/28/2013 - 6:02pm

I know this question has come up a few times.  Just curious as to folks thoughts on this.  Folks always seem surprised that I'm still working full time.  Had met to small intestine last year.  That was removed surgically in October but they left a lymph node they couldn't easily remove surgically.  Last May- Sept I did Zelboraf and then Sept- Nov Yervoy.  Started anti-pd1 in Jan.  Lymph node continues to shrink but my last scan  I did have a tiny lung spot show up.  Guess that is what got me thinking more about working full time.  I think maybe sometimes I try to do to much :)  (i.e. working full time, playing volleyball a few nights a week, and yoga 2 x's per week).  I just had dose #5 of Merck's anti-PD1.  No major side effects although starting to feel the fatigue.  

I know the work distraction is good - but also want to make sure I'm not pushing myself too much.  :)

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Blakejj's picture
Replies 1
Last reply 4/28/2013 - 4:21pm
Replies by: 5374brian

 

Hello,

I was wondering if you guys could help with a health insurance question. 

In early 2011 I had a mole removed from my chest that turned out to be malignant melanoma.  Clark’s level II, and Breslow thickness of 0.25mm.  Follow up surgery was a success and the doctor said they got it all.   I have not had any reoccurrences since then.

Fast forward to 2013, and unfortunately I have no health insurance, but now have a job with enough money coming in so I might be able to afford it.  If possible, I would like to purchase it and was looking for guidance on how to proceed as I have been given a lot of conflicting advice. 

If I want insurance now, I have been told by various folks that there are a couple of insurance companies who would be willing to insure me, but most will not.  Thus I should work with a broker to make sure I only apply to the ones who are willing to insure me, as having a denial/rejection for insurance makes it a lot harder to get coverage going forward.  (An insurance broker probably told me this!)  Any thoughts as to the validity of this?  If it is true, which insurance companies are most likely to insure me?  Would future coverage for melanoma excluded (ie they won’t cover any melanoma costs, but will cover other things)?

Alternatively I could wait to 2014.  My understanding is that the ACA says they can’t deny me nor charge me rates any different than their other customers.  Is that true?  If so, could I go to a website like ehealthinsurance, or via a broker, and just apply to the plan I like best?  Is future coverage for melanoma excluded (ie they wont cover any melanoma costs, but will cover other things)?

I understand that the actual execution of the ACA will probably change over the next 7 months, but just trying to figure out things as they stand now.

I am in Texas if it matters.

Any help, thoughts, or guidance is appreciated!

B

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mama1960's picture
Replies 7
Last reply 4/26/2013 - 12:33pm

Anyone have any info on bone mets? Any word on Zelboraf and bone mets? I am braff positive. Any help regarding the pain? Taking 10MG hydracocone every 4 hours, very little to show. Had bone scan yesterday and will get results Monday. Bone met in shoulder showed up in MRI.

It is what it is.

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Sherron's picture
Replies 16
Last reply 4/25/2013 - 10:25am

Hi Everyone,

I will be doing the Melanoma Walk in Dallas on May 4th, 2013 at Bachman Lake in Dallas, Texas.  I am doing in memory of husband, Jim, some of you will remember his story.  And I will be doing for all of you also....If anyone wants to help support me in my effort, go to Aim at Melanoma to make a small donation...Every little bit helps in research and helps to find a cure...It is under my name  Sherron Clevenger.

Take Care,

Sherron, wife to Jim FOREVER

PROFILE  UNDER - Sherron

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mama1960's picture
Replies 3
Last reply 4/24/2013 - 10:28pm
Replies by: gabsound, Anonymous, hbecker

Looks like the monster has moved to bones. Need all info you can send my way. First, what can be done about pain when the hydracodone isn't working. Don't know how much longer I can work. How do you start the disability process?

It is what it is.

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