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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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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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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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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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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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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Just completed around three of BioChemo after receiving good news of no active decease.  So, now the talk is complete round 4 do another PET and if things are the same or better consider removing the tumor on my neck, which appears to be free floating and not attached.  I am with Kaiser and been treated at Riverside Kaiser.  I have had three other tumors removed from different locations, breast, lung and buttocks, but know the neck.   Here is my question does anyone know a doctor within Kaiser who is highly recommended.  I have a couple of names for the South Bay but preparing through research.  I must say I have no complaints regarding the ABC program at Kaiser Riverside.  They have so good to me.

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My husband has been on Zelboraf and brain tumors continue to shrink! He still feels great and is working part time at Lowes to give him something to do. Now for the bad news..... he has had a lump for a month in his neck that is melanoma, but doctors are confident it is localized and with surgery on Mon, he will be ok! So, good news/bad news & weird that Zelboraf still working on brain mets, but this popped up. Oh well, that's our new journey with melanoma. We still keep that Positive Mind Attitude and keep on living!! :-)

Best wishes to you all! Kelly

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kellygrl's picture
Replies 2
Last reply 4/24/2013 - 9:20pm
Replies by: kellygrl, aldakota22

My husband has been on Zelboraf and brain tumors continue to shrink! He still feels great and is working part time at Lowes to give him something to do. Now for the bad news..... he has had a lump for a month in his neck that is melanoma, but doctors are confident it is localized and with surgery on Mon, he will be ok! So, good news/bad news & weird that Zelboraf still working on brain mets, but this popped up. Oh well, that's our new journey with melanoma. We still keep that Positive Mind Attitude and keep on living!! :-)

Best wishes to you all! Kelly

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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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swissie's picture
Replies 0

Hello everyone,

I haven't posted in a long time.
Short history, Stage IIIb since July 2009, started double blind trial with 10 mg ipi / placebo in September 2010.
Ended this trial on own request after 8th infusion due to side effects (fatigue and increase of spleen).

All my scans have been clean so far.
Half a year ago, I had a swollen lymph node in my right groin (the original melanoma was on my left knee, the met in my left groin).
Had an FNA which came out as a reactive lymph node.

Last week I had a second biopsy (increase from 2.2 to 3.5 cm), which is declared a reactive lymph node again.
Off course this is great news.

However, there is nothing mentioned about any melanoma marker testing.

Can one say a lymph node is reactive, just based on the kappa-lambda ration of 1.1 :1 and the existance of 66% CD3 positiveT-cells, 27%  CD19 positive B-cells  and the lack of CD5, CD10 and CD23?

It would be great if anyone can explain this (response from my doctor: "I guess if the cell line is clear (all lymphocytic cells) there is no need for melanoma markers").

 

Thanks for your help,
Swissie

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Brendan's picture
Replies 5
Last reply 4/23/2013 - 12:11pm
Replies by: kylez, Brendan, jag

Hi Everyone,

I had a brain met discovered last June (I was NED for 9 months prior). I had GammaKnife to treat (followed by ipi in Sep-Oct) . I then had a craniotomy in Nov to remove the met which was causing severe pain (pathology revealed dead cells and melanoma cells). A recent MRI showed a 16mm recurrence and I begin my CyberKnife on Wed.

Does anyone have any experience with both types of radiation?

Thanks!
Brendan

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Brendan's picture
Replies 0

Hi Everyone,

I had a brain met discovered last June (I was NED for 9 months prior). I had GammaKnife to treat (followed by ipi in Sep-Oct) . I then had a craniotomy in Nov to remove the met which was causing severe pain (pathology revealed dead cells and melanoma cells). A recent MRI showed a 16mm recurrence and I begin my CyberKnife on Wed.

Does anyone have any experience with both types of radiation?

Thanks!
Brendan

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Crystal0702's picture
Replies 3
Last reply 4/22/2013 - 1:30pm
Replies by: Crystal0702, Janner

Hello!  I was just diagnosed with Melanoma in situ based on a small sample that my PCP took. I have a Surgery Consult and Oncology appointment next week. My biopsy report inidcated that the Melanoma Cells covered the full tissue sample, which is why I need further surgery, can this diagnosis change? Is there a chance that the cells go deeper than the sample showed?

Also, Ive seen mix responses - but is this actually cancerous?

Thanks in advance for anyones opinion/advice/experience! 

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