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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Anonymous's picture
Anonymous
Replies 1
Last reply 2/26/2013 - 7:11am
Replies by: G-Samsa

http://www.medscape.com/viewarticle/779820

Major Advances in Melanoma Set for AAD Meeting

 

 

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Valentine's picture
Replies 1
Last reply 2/25/2013 - 11:16pm
Replies by: Gene_S

Hello all,

Just thought I would pop in today to say that I am thanking God for 3 years with no evidence that the cancer has returned. I will tell everyone that I know today, but the people who frequent this board are the ones who really understand what it means. I don't post often, but lurk daily. Thank you for the support.

Cheri

stage 3b - 3 years NED!

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lou2's picture
Replies 2
Last reply 2/24/2013 - 8:58pm
Replies by: Janner, Anonymous

Isn't it thought that melanoma is not sun related?  Because it shows up in places that may not see sun?

But look at figure 1 in the CDC report on cancer incidence:

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6207a1.htm?s_cid=mm6207a1_e

They show the top ten types of cancer in various racial/ethnic groups.  The only group that has melanoma in the top ten are the white folks.  All the other groups do not, and these are all people who tend to have darker skin tones.

 

This is very puzzling.  Is there some other explanation, like maybe certain genetic configurations that differ among these groups?

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Replies by: NYKaren, Anonymous, Janner, Colleen66, aldakota22

See surgeon Monday.  Ist Mel results Clark Level IV2a.  Breslow depth 1.58 mm. 1x .5cm wu 2 cm margins.  Not sure about the results from the current punch....all I know is that is positive.  Seeing surgeon Monday.  Any feedback would be great.  I am nervous especially being only 39.  Tony

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democat's picture
Replies 6
Last reply 3/10/2016 - 5:17pm
Replies by: Anonymous, dolphin5, kathycmc, thrashter

Hi everyone

 

I am stage 3a/3b (due to high mitotic index). I live in San Diego, and recently met with Kaiser's only melanoma oncologist (for 100,000+ patients), Dr. Gailani, who also runs Kaiser's biochemotherapy and IL-2 protocols  - they offer biochemo for stage IV melanoma and as adjuvant therapy for stage III. Unfortunately, Dr. Gailani left Kaiser suddenly this week for a medical leave that is expected to last several months, at least. It is too bad, because I had  complete confidence in him.

I was told by someone who works in the biochemo program that the program is closed to new patients while Dr. Gailani is gone.  Kaiser will be referring California patients who want biochemotherapy to USC or UCLA, but it's up to my local oncologist to make the referral, and she is hostile to my request.  She was "put ou" t when I asked to for a referral to Dr. Gailani, even though she has no particular expertise with melanoma, and gave me a lot of misinformation, and didn't even know about Kaiser's biochemo program.  She doesn't think I need a specialist.  (An example of her misinformation: she told me I didn't need scans because it doesn't matter whether a recurrence is caught early, because there would be nothing they could do - I would die within a year.  Dr. Gailani told me the opposite - that early detection of a recurrence is the most important thing, and that there would be plenty of options at that point.)

I would appreciate hearing from anyone else who is in this catch-22 at Kaiser because of Dr. Gailani's sudden departure. Also, has anyone had biochemo at either UCLA or USC? If so, what can you tell me about those programs?  Also, does anyone know whether adjuvant biochemo is offered in San Diego or Orange County?

 I'd love to hear from anyone who has done biochemo (interferon, IL-2 plus chemo drugs administered for 5 days in hospital three times, with 3 weeks off between each administration).

Finally, I need to change oncologists at Kaiser San Diego.  Any recommendations?

So, in summary, I'm looking for information re:

1. Dealing with Kaiser in Dr. Gailani's absence, getting Kaiser to give me an out-of-system referral

2. USC vs. UCLA for adjuvant biochemo, or is there somewhere in San Diego or Orange County?

3. experience with adjuvant biochemo

4. recommendations for a Kaiser oncologist in San Diego

Thank you!!

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

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mrsmarilyn's picture
Replies 4
Last reply 2/25/2013 - 1:34pm
Replies by: susanr, POW, jmmm, Carole K

HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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HI - My brother has been fighting Mel for 11 years - and now has one large (over 2 cm) in brain, in between lateral ventricals, bleeding.  At Jax Mayo, they are advising WBR and then starting Zelboraf in a week.  Does anyone have experience with WBR followed by Zelboraf.  Has anyone had one in ventricals and how was treated?  We are debating of passing on WBR and going direct to Zelboraf- but Mayo feels WBR will stop bleeding and shrink enough to allow ventrical fluid to flow again - and then follow up with Zelboraf and targeted radiation in Pittsburgh.

 

Any thoughts or advice is deeply appreciated.  Thoughts and prayers to all!  (He is BRAF K has responded well to zelboraf before)

Thank you,

Mrs Marilyn

Sister of Gary (Stage iv)

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These are my the updated pictures, after scraping off it and a better quality camera. The last GP who saw it said he think it's angioma but then gave me a date with a derm this monday. When I see the pictures of angioma or hemangioma, (this looks close to hemangioma) they look raised from the skin. Mine is not raised, I have been pressing it to see if it has any growth underneath, I did blind test by feeling and seeing if it is different from the surrounding skin. I can't find anything.

 

This is the follow up from the other thread, since that thread got lost.

 

It is blood red without any multiple colors, but after reading about some great suggestions and knowledge I gained here, I am pushing for the excision. I can't help over think and fear that this derm is also going to blow me off saying she doesn't have time. Most derm are busy with botox in Canada, where the money is. I hope this works out this time.

 

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JoshF's picture
Replies 4
Last reply 2/26/2013 - 7:17am

Had scans yesterday. Almost 2 years NED(May). Onc feels real comfortable with my situation. Never found primary and felt this was a dermal primary. At this point onc doesn't feel scans are necessary anymore. Thinks I'm in good place as chance of recurrence is below 10%. This obviously makes me happy but I still have reservations. We all know how tricky this cancer can be...keep wondering if its laying in wait to rear it's ugly head again. You see so many cases on this site where people are given all clear only to have their world rocked again. So though happy not necessarily overly confident. Any suggestions out there?

Let's work for better treatments....for a cure!!!!

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Hi all

Diagnosed late in 2012: Back tumor, Breslow 14mm, mitotic 12mm, Clark's IV, ulcerated. Tumor recurred in original excision site (before WLE) in about 4 weeks, at 7mm.

SNLB showed positive nodes under both arms (1 of 2, and 2 of 5). So doctors are giving me the option of having both full dissections, or not. Chance of morbidity is higher when two dissections are done, they say. At this point, I'm essentially IIIC, with a very active cancer. Is it worth it to have the dissections, and risk a lower quality of life (I'm generally a very active guy, and my work requires me to be), or just accept that it's probably systemic, and just watch and wait?

Thanks, 

John

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JerryfromFauq's picture
Replies 7
Last reply 2/25/2013 - 8:08am

Can anyone get in the chat room tonight?    I ws  in it talkiing to a young lady around 5 pm EST and it disappeared and I have been umable to get it back up sincd then,

I'm me, not a statistic. Praying to not be one for years yet.

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akkcak's picture
Replies 3
Last reply 2/23/2013 - 12:54am

I had a pet scan this morning. The technician asked me as we were walking in if i had any metal and i said no. It dawned on me after i left that i had forgotten about the underwire in my bra. Is this going to cause a problem?
I also had a mri of my brain last week that showed a 4 mm spot. This may be a stupid question, but how do they determine it is melanoma from just pictures(mri/pet)? Now the waiting game. Hoping it's just because i'm super smart and my brain is growing.
I'm currently in my 7th month of low dose interferon.

Thanks!
Amy

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