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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truwill's picture
Replies 2
Last reply 12/29/2010 - 10:17pm
Replies by: nicoli, Dynasysman

I was just given this site by the Regional Cancer Center of Hunterdon County. I was glad to find the site for Melanoma Research. It's nice to know that other people are fighting this type of cancer. I never thought I would be a patient, but I am. I just went through breast cancer with my mom who is 85 and never once complained about her situation. God bless her, she has to care for my soon to be 90 year old dad who is losing is memory. I've lived and helped them with their daily lives for some 5 years now. Now I'm the one my mom and dad are concerned about. I went through a rough patch with this cancer on my head and those women around me in work and personal life can't believe that a woman can get this type of cancer.....There remarks were, "How did you get that on your head, you have all that hair...doesn't that happen to bald men or men who have little hair. They just can't believe that women are just as much prone to this then men are. I'm living proof that you don't mess with this and you get it checked out when you notice it. I was too involved with my work to take the time to go see a doctor. Worse yet, I work in Pharmacy and watch people come in everyday to my work to buy over the counter drugs and RX drugs to make themselves feel better.  Now I'm left with a spot the size of a baseball that has no hair and will never grow any and a rather sizable dent from the depth they had to go to remove the cancer. I have no feeling in this area at all and little behind my left ear and neck where they took the nodes. And this is all due to the fact  I ignored the SIGNS....Now the question for anyone that can help me is what can be done at all too my head. Am I destined to wear a wig for the rest of my life....or is there some procedure I can have to cover this huge spot....My doc came up with tissue expansion under my scalp. This sounds and feels painful.... IS THERE ANY OTHER OPTION FOR ME AND OTHERS LIKE ME....I'M HOPING I CAN GET SOME INSITE TO THESE....

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I'm posting for a family member that is Stage III and soon will undergo ELND (after the sentinel showed a microscopic amount in one).  Hopefully the ELND will not show any more spread but if it does, I wanna help her make sure she is getting the best treatment she can. It doesn't look like NV has a NCI center. If it did, maybe that would be a good place to go. How does she make sure her onc is going to fight her life in every possible way? How do we make sure he's aware/active/literate of the phast III trials going on and will refer her if appropriate? 

Immediately is there anything she should ask the onc-surgeon regarding the ELND. Are multiple ways this can be done, are there speical scans that can be done during the surgery to make sure they are taking what they need. It seems like I read it really does matter how good the onc surgeon is performing the ELND. How can she make sure she's in good hands?

 

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Rocco's picture
Replies 16
Last reply 12/29/2010 - 6:32pm

Received word yesterday that my latest CT and MRI show no signs of mel.  I feel quite blessed to still be here some 5+ years after the Stage IV diagnosis.  This is the best Christmas present ever.  Merry Christmas everybody! 

Luke 1:37

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deirgey's picture
Replies 1
Last reply 12/29/2010 - 4:09pm

My dad was recently diagnosed with Stage IV Metastatic Melanoma of the Lungs, Liver, Spine and a few spots on several places in his bone.  He is going in for Radiation tomorrow for the spine.  His oncologist recommends he start on Denosumab next Tuesday to reduce the bone cancer.  I worry that this drug can disqualify him from starting on trials.  Just wondering if anybody has any advice on this?  We would like to get a second opinion at MD Anderson but we have heard it is difficult to get a second opinion over the phone.  Is this true?  Thank you!!

Deidre

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My oncologist is sending me to  Lee Moffitt Cancer Center in Tampa FL, was wondering if anyone has been a patient there, any good Dr. referrals?

Thanks for any info :)

Pennie Mills

embrace the positive

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King's picture
Replies 1
Last reply 12/29/2010 - 8:13am
Replies by: King

There is a Stage IV MPIPer who lives in Buffalo who needs our help.  She has been accepted into a BRAF trial at Mass General and was scheduled to start the trial today.  However, due to weather conditions, her flight was cancelled.  Her husband is able to drive her to Boston but needs someone in the vehicle with him to assist his wife.  She is weak and in pain.  This whole situation could change at any moment.  A flight might open up or a family friend might be able to help out.  However, if anyone reading this thinks they or someone they know could help, please email me and I will give you more information.  We are thinking that someone needs to be in the Buffalo area now since it seems quite unlikely that anyone could fly into Buffalo at this time because of the backlog of people dealing with cancelled flights.  We are open to any and all ideas.  

 

Stay Strong
King

ktreble1@gmail.com

Stage IV 7/05  Liver mets

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deirgey's picture
Replies 3
Last reply 12/28/2010 - 10:25pm
Replies by: LynnLuc, James from Sydney, Anonymous

My dad was recently diagnosed with Stage IV Metastatic Melanoma of the Lungs, Liver, Spine and a few spots on several places in his bone.  He is going in for Radiation tomorrow for the spine.  His oncologist recommends he start on Denosumab next Tuesday to reduce the bone cancer.  I worry that this drug can disqualify him from starting on trials.  Just wondering if anybody has any advice on this?  We would like to get a second opinion at MD Anderson but we have heard it is difficult to get a second opinion over the phone.  Is this true?  Thank you!!

Deidre

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Treg's picture
Replies 12
Last reply 12/28/2010 - 10:12pm

Things are a bit different since the last time I visited. Some of you may remember me. My name is Treg and this place made my life a whole lot easier back soon after I was diagnosed. I am approaching 6 years ned and other than the poor economy that has hit pretty hard in the Brooks household, life is amazing. My boys are growing like weeds (mind & body) and I celebrated my first wedding anniversary back in Aug.

I see many new names and some familiar names as well.

The one message I would have for newly diagnosed, there is much hope. Back in 2004 I felt powerless and lost. Thanks to the research where I gained the knowledge, the caring people here at mpip, my docs and the love of my boys, I was able to pull myself up and resume a normal life as a survivor.

Good luck to you all. Keep your spirits up. Say hey on Jan. 6, 2011. I will be celebrating 6 years.

Treg, stage 3...NED!

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Shelby - MRF's picture
Replies 4
Last reply 12/28/2010 - 2:57pm
Replies by: Anonymous, Jan in OC, EmilyandMike, KatyWI

Amy Harmon of the The New York Times has another story on melanoma research that was posted last night.  It focuses on the role patients play in finding a cure and features MRF grant recipient Dr. Roger Lo.  This latest in the NY Times’ ongoing coverage of melanoma focuses on the role that patients have in solving the problem of tumor resistance.  Please sign-in and use the “E-mail” button to the right of the article to pass it along.  This will keep the article at the top of the “most e-mailed” list on the NYT website and bring more attention to the urgent needs that melanoma patients have: http://nyti.ms/g0VPWD

Happy Holidays!

MRF  

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emilypen's picture
Replies 5
Last reply 12/28/2010 - 2:49pm
Replies by: Jan in OC, molly, Terra, LynnLuc

HI All,

My husband has been on a MEk/P13k inhibitor study for the past 4 months. Today he had his 4 month CT scan ( protocol is every 2 months) and his doctor just called to say he had seen the scans and everything looks great!

We won't get official measurements on any reductions until Jan.5th but just knowing that the drugs are still working is amazing. Last time is was 12% reduction and this time we're hoping for more.

It is so nice to have him close to his old self again, to see him able cut his pain meds in half, and to know that this Christmas we will sleep easy.

 

Happy Holidays to all.

 

Emily

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Vermont_Donna's picture
Replies 2
Last reply 12/26/2010 - 8:10pm
Replies by: Vermont_Donna, lhaley

hi,

Have had an achy section in my thigh, near where a melanoma was surgically removed for a couple of weeks...thought it might be a pulled muscle. It just feels weird there. I did bring up with my oncologist Wednesday that I was having some new sub-q's, but didnt specifically show him that spot of my thigh which feels weird. Now I just had a bone scan right before the Ipi started and I just had round two, so the bone scan was in November. It was clear, no sign of bone mets. They couldnt develop ths fast so that I had symptoms could they?? Just need some reassurance if there is any to be given!!

Thanks,

Vermont_Donna

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Tracey FL's picture
Replies 4
Last reply 12/26/2010 - 11:10am

I have not been on for a few months.  Mom has been going to Moffitt for two different trials PD-1 and fluradarbine (sp) they failed.  The tumors have spread to the brain.  She had the radio knife done two weeks ago on three of her small brain tumors.  We just found out that she has more brain tumors.  She has more tumors in the body cavity and on the neck rather large ones.  The Drs want to do whole brain radiation now, 5 days a week for 4 weeks.  She is now on Chemo and no longer at Moffitt, they sent her home for the chemo since it can be done in South Florida She is still doing rather well but I have started to see her get weak  not in to much pain (most of the pain is from some back problems).  Her hair is gone and she has lost 20 lbs.  I don't know what to do.  Mom has been fighting this stage lV since March.  I want to do the best thing for her, and it seems that her options are running out.  Has anyone been at this stage and been able to go back to some trials?  Has anyone done a BRAF or any of the others I see on this web site talked about at this stage.  I feel that I am loosing hope.  She says that she just does not want to travel any more.  I think that is why I feel helpless.  I am sorry that I am rambling on.

I pray for everyone with this.

Tracey

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BarbieGirl's picture
Replies 3
Last reply 12/26/2010 - 7:36am
Replies by: Sharyn, King, molly

To the many I"ve met in person from the MPIP or just here online, and to those I've yet to meet (either in person or online), I wish you the merriest Christmas of all!!

On this, Jesus' birthday, I pray for a cure to this stinking beast we call melanoma!

I pray for comfort and peace to those who are fighting the war, those who are NED, and those who have lost a dear loved one. 

I hope all you guys and gals were good this year---don't want Santa bringing you coal or switches! =)

*hugz* and love from my heart and home to yours,

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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LynnLuc's picture
Replies 4
Last reply 12/26/2010 - 12:29am

Had my MDX 1106 and then the 6 injections of the peptides yesterday. I have thyroiditis caused by the MDX 1106 and was put on Synthroid...told it's not a problem and that its just an auto immune response. Was told my reaction is what is seen in IL-2 trials and is seen as having a positive reaction...ugh...side effects good news...bah humbug LOL. Hoping  to have some energy one of these days and hope to go back to work...SSDI doesn't pay the bills and the trauma of all of this...I would just like to move on and "pretend" I am normal again- at least for awhile!! When the total income of the household is 1350 a month and medicaid wants you to pay over 1000 a month first- you know our society is broken....

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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Anonymous's picture
Anonymous
Replies 3
Last reply 12/25/2010 - 9:31am

I would like to know how bone mets are detected???? Is there a special scan??? How are bone mets detected?

Thanks You for your reply, Douglas (wife Julie stage 4)

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