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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rainsberger.tony's picture
Replies 6
Last reply 5/16/2011 - 10:40am

Hi All,

Just wanted to share a little joy/hope:

 

This brief history of my wife's journey with melanoma. 

6/06:  Initial diagnosis, stage IIIC with lymph involvement in her left armpit. Partial basin resection, several large moles removed (primary never identified), clean PET scan

7/06-8/07:  Treatment: adjuvuct therapy with leukine 

8/07:  Disease progression, stage IV

8/07-11/07:  Treatment: IL-2 with partial response but significant growth as well

12/07 – 7/08:  Treatment: Off trial chemo cocktail – avastin, taxol, carboplatin

8/08-9/10:  Treatment: Clinical trial compassionate use Ipi(now called Yervoy) along with several surgeries to remove localized growth that didn’t kick her off the trial

9/10:  Treatment:  Dacarbazine, cisplatin, vinblastine

12/10-Present:  NED

I feel it is important to note that my wife is a firm believer in the power of intention and the importance of visualizing the outcome you wish to create.  While we have had our share of tears and fears, she works at creating a positive attitude; it pervades her daily life.  She spends hours visualizing/feeling: “what it is like to live in a healthy, cancer-free body”, makes gratitude lists, listens to positive affirmations, and works with a counselors and support groups.  Given any opportunity she will celebrating the little victories and does a great job of looking beyond the set backs to the next victory, always hopeful of the next treatment.  She decided long ago that a scan simply indicated when a treatment change was necessary and told her oncologist to skip the minutia of numbers associated with every little lesion. 

There is no research suggesting that this particular treatment path would help a patient reach NED.  Maybe it is her particular disease, maybe her treatment sequence, maybe her ever-present faith in good, maybe a combination.  Personally, I believe that miracles happen every day, faith and hope are important, and while medicine/science are wonderful tools, they certainly don’t have all of the answers.

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/18/2011 - 8:30am
Replies by: Carol Taylor, boot2aboot, Anonymous, Lisa13, Charlie S, nicoli, akls

I am very unhappy with the way my family looks at skin cancer, Melanoma.  I was diagnosed with stage IIIC Melanoma June 2010.  I have never been one to go indoor tanning, but my sister, mom, and neice who is 15 have gone and my neice is still going.  My neice feels the need to be tan like all her friends no matter what the risk is.  I have shared information with my family but it seems like no one is taking this seriously.  My sister who would lay in the sun for hours for years has never had any problems.  My mom who tanned indoors for years never had any problems, but me who was never really into tanning got Melanoma.  My neice also does the relay for cancer walk every year.  I don't know if she just feels like this could never happen to her, or she just does not want to think about it.  Not sure.  How do you make people understand how deadly this is? My mom has a spot on her back that is as big as my thumb nail and has several different colors in it and she does not feel like it is an emergency to go to a dermatoligist to have it checked out.  Am I just over reacting?  They have all seen what I have gone through for the last almost year.  I am into my 7th month of Interferon shots.

Don't sweat the small stuff. There are bigger fish to fry!

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shellebrownies's picture
Replies 6
Last reply 5/16/2011 - 5:18pm

Anyone on this trial? Just wondering about response rates and levels of side effects...

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Replies by: shellebrownies

My husband was given this as a trial option on May 6th; now I cannot find anything about this trial on ClinicalTrials.gov or Cancer.gov. Is it possible this is closed?

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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mayeast's picture
Replies 3
Last reply 5/15/2011 - 11:21am

After 8 weeks I have been taken off this clinical trial because of increased METS in the  liver, ( 12 up to 20). I did have some decrease in size in other areas, but not enough. I am now going to try Temodar.

Stay in the moment.

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LynnLuc's picture
Replies 5
Last reply 5/18/2011 - 11:38pm
Replies by: FormerCaregiver, nicoli

Posting this because in the beginning I  was on this and I knew it didn't hold mine back for long...the radiation did more then Temodar did...

Temozolomide chemoresistance heterogeneity in melanoma with different treatment regimens: DNA damage accumulation contribution.

The efficacy of temozolomide in melanoma treatment is low (response rate <20%) and may depend on the activity of O-methylguanine DNA methyltransferase (MGMT) and mismatch repair. We identified melanoma cell lines with different sensitivities to single versus prolonged clinical dosing regimens of temozolomide treatment and assessed a variety of potential resistance mechanisms using this model. We measured mRNA expression and promoter methylation of MGMT and essential mismatch repair genes (MLH1, MSH2). Cell cycle distribution, apoptosis/necrosis induction, O-methylguanine-adduct formation, and ABCB1 gene expression were assessed. We found that three cell lines, MelA, MelB, and MelC, were more sensitive to a single dose regimen than to a prolonged regimen, which would be expected to exhibit higher cytotoxicity. KAII and LIBR cell sensitivity was higher with regard to the prolonged treatment regimen, as expected. Only MelC expressed MGMT. Gene expression correlated well with promoter methylation. Temozolomide exposure did not alter mRNA expression. Different sensitivities to temozolomide were caused neither by delayed apoptosis induction due to early cell cycle arrest nor by O-methylguanine-adduct formation or efflux transporter expression. MelC was the most resistant cell line with rapid elimination of O-methylguanine adducts. This was in good agreement with its MGMT expression. The sensitive cell lines KAII and LIBR accumulated O-methylguanine adducts after a second treatment cycle with temozolomide in contrast with the other three cell lines. We conclude that MGMT expression and DNA adduct accumulation are relevant factors in temozolomide chemosensitivity. Considering individualized temozolomide treatment regimens either by quantification of DNA adducts or by chemosensitivity testing seems worthwhile clinically.

http://www.curehunter.com/public/pubmed21460749.do

May 26th will be 14 months NED

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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TTaylor's picture
Replies 19
Last reply 1/22/2013 - 2:59pm

My mother was diagnosed this week with metastatic melanoma.  I need to get her in the best cancer center/hospital that specializes in her type of cancer.  Would like input on which of these 3 top cancer centers is best suited for the treatment of metastatic melanoma:  MD Anderson, Sloan-Kettering, or Mayo?  Time is of the essence so your insight is much needed & greatly appreciated.  Thank you, Tonya

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Here is a link for a newspaper article written about my son on Friday, May 13th. It will only be on the site until Monday afternoon, May 16th, so check it out soon if you want to read it.

 

http://www.timesrecord.com/

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Hi Jim,

 

Wondering how you are doing since you have not posted lately. Hope things are well with you.

 

Douglas

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FormerCaregiver's picture
Replies 13
Last reply 5/15/2011 - 10:57am

If you were newly diagnosed today and your oncologist recommended interferon treatment but didn't
say much about the alternatives, what would you say?

Thanks for any opinions that you may have.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/20/2011 - 10:11pm
Replies by: annabanna, lhaley

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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Anonymous's picture
Anonymous
Replies 0

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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annabanna's picture
Replies 7
Last reply 5/14/2011 - 3:27pm

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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annabanna's picture
Replies 0

i went to the dermatologist Monday 5/8/11 and they called today and told me the biopsy they did came back melanoma. they are sending me to specialist in birmingham, al but it is going to be june 2nd before they can they get me in. i just wanted to know if this is normal or if this is to long to wait to see specialist. just don't know how i can take waiting this long to know something.

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kjshaner444's picture
Replies 4
Last reply 5/16/2011 - 5:48pm

I have Melanoma. I begin Interferon on Monday. Thank you.

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