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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Terra's picture
Replies 2
Last reply 5/16/2011 - 12:28pm
Replies by: Terra, emilypen

 

He does have mets in his liver, bone (ribs), one in kidney, and muscle, and I a few other places.  He has ct and mri coming up and was just taken off of P13K and Mek trial because of cv levels in blood (muscle breakdown). He needs a 28 day wash out period for ipi, it has been 10 days already, so nervous about waiting the next 18 days and waht can happen.  Next plan is TIL in Washington at NCI. Mentally and emotionally it is taking its toll. 

 

I know I don't want to hear these answers but Derek has some unexplained swelling in his wirst and forearm.  He has nerve issues in this arm and it is also where he has had numerous surgeries.   He also has been incredibly itchy all over - anybody have this coming off a treatment?

 

Thank-you so much,

Terra

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Carol Taylor's picture
Replies 4
Last reply 5/17/2011 - 10:42pm

Janner and Michael, I may have missed it and if I did I'm sorry, but I haven't noticed posts from either of you lately and I'm hoping you're each well and doing OK. You're each missed greatly! Like I said, there are so many pages of threads I may have missed something, but you haven't shown up in my email notifications, so just checking on you.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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shellebrownies's picture
Replies 5
Last reply 5/16/2011 - 4:46pm
Replies by: chenrydh, Anonymous, RMcLegal, Carol Taylor, Terra

My husband will be starting a trial tomorrow and he will either be taking just ipi or ipi and GM-CSF. Can someone let me know what kind of side effects are common to experience? 

Also, I've been told it can take some time to work...I also read about the tumor sites becoming painful and warm. Does that happen regardless? Or does that only happen in the patients that the medicine is helping?

Sorry to be bombarding the board as of late, but I'd like to have as much information as possible going into the appointment tomorrow. Thank you!

 

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: triggerfish, boot2aboot

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&c...

Abstract:

Background: Serological typing for both HLA class I and class II antigen expression, has previously shown association of specific HLA antigen expression with clinical response and survival in patients with metastatic melanoma treated with IL-2 (e.g. HLA-DQ1). Purpose: To evaluate the impact of HLA class I (low-resolution) and class II (high-resolution) expression, on the outcome of high-risk melanoma patients receiving adjuvant high-dose interferon. Methods: 181 stage IIB, IIC and III melanoma patients (88 female and 93 male), median age 52.1 years and 246 healthy controls were included in this study. DNA was used for the determination of HLA-A, HLA-B, HLA-Cw, HLA-DRB1 and HLA-DQB1 genotypes. Results: With a median follow-up of 37 months, 59 (group 1) patients have remained with no evidence of recurrence and 122 have recurred (group 2). Statistical significant differences between the two groups, were found in the following genotypes: HLA-A*02 (42% vs. 57.3%, p=0.08), HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 34.4%, p=0.01), HLA-B*57 (11.8% vs. 2.4%, p=0.02). Statistical significant differences between group 1 and healthy controls, were found in the following genotypes: HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 28.5%, p=0.05), HLA-B*57 (11.8% vs. 4.5%, p=0.05), HLA-Cw*03 (23.7% vs. 11%, p=0.01), HLA-Cw*06 (27.1% vs. 16.1%, p=0.06), HLA-DRB1*0701 (27.1% vs. 13.4%, p=0.01), HLA-DRB1*1601 (35.6% vs. 22.3%, p=0.01), HLA-DQB1*0202 (23.8% vs. 10.1%, p=0.09). Conclusions: Statistical significant differences were seen in HLA-A and HLA-B alleles between the patients with high-risk melanoma free of recurrence and those who recurred after treatment with adjuvant interferon. Additionally, differences were seen between healthy controls and melanoma patients free of recurrence.

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

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Rocco's picture
Replies 1
Last reply 5/16/2011 - 8:19am
Replies by: Laurie from maine

JUST FYI in case you're interested in attending...SPRING SYMPOSIUM 2011

Integrative Therapies and Cancer Care: 

Learning About the Potential Impact On Your Wellness and Wellbeing

An opportunity for education, discussion & connection for patients,
survivors, families & friends

Tuesday, May 17, 6:30 – 9:00 pm

Dana Farber Cancer Institute
Jimmy Fund Auditorium
35 Binney Street, Boston, MA

Speakers:

David S. Rosenthal, MD, Medical Director, Leonard P. Zakim Center for
Integrative Therapies, Dana-Farber Cancer Institute
Stacy Kennedy, MPH, RD, CSO, LDN, Senior Clinical Nutritionist,
Dana Farber Cancer Institute
Deborah Steele, MA, ATR, Manager of Support Services Programming, Norris Cotton
Cancer Center, Dartmouth Hitchcock Medical Center
Amy Grose, MSW, LICSW, Clinical Oncology Social Worker, Department of Psychosocial
Oncology and Palliative Care, Dana-Farber Cancer Institute

RSVP:
Melanoma Foundation of New England at (978) 371-5613 or tsignet@mfne.org

Services:
Free Admission, Refreshments, Free Parking (in the Smith Building at 1 Jimmy Fund Way)  

Luke 1:37

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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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