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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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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Leigh's picture
Replies 8
Last reply 1/1/2011 - 11:20am

Hi there,

I have never posted on a board before, mostly look at others and try to learn from them.  I hope you dont mind me asking for some direction.  I have been so very lucky to recently have a negative sentinel node biopsy after being diagnosed with a melanoma recently.  The nodes were enlarged (but had been painful so thought to be related to a small infection I had) I dont know what type of follow-up I will be having (I believe 3 monthly skin checks) and have had no other tests done (eg CXR etc) although I know that current thinking is that further investigations are not indicated. 

My main concern is making sure I stay well and I am so so sorry when I read others stories.  I have two young children, my youngest is now 12 weeks old and I am still exclusively breastfeeding after expressing through the time I was in hospital with surgery/radioactive tracing etc.  Does anybody know if breastfeeding has any impact on women with a diagnosis of melanoma.  I know that there is some indication women avoid HRT due to a possible hormonal link, previous thoughts that pregnancy impacts melanoma, although this doesn't seem current thinking opinions change.  I want to try and find some conclusive information about this and wondered if anybody could point me in the right direction.

I have been reading frightening stories of people having WLE/sentinel node biopsies and getting the all clear, only to find out years later that they have recurrence and I need to do everything I can for my childrens sake to make sure that doesn't happen.  I'm sorry to write this when so many of you have got unbearably difficult situations and this must seem very minor in comparison. 

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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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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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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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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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Springbok's picture
Replies 15
Last reply 1/2/2011 - 9:55pm

I have been coming down from a month long high after the results of my SNB were NED. I had lost 10lbs just from the stress of waiting for results. The pathologist didn't seem to be in any hurry. And I was also not very hopeful. The primary tumour was ugly - Breslow 2.6mm, Clarke's level iv, ulcerated with Mitosis of 6/mm2.

Now in the cold light of dawn, I am thinking things over and would ask for some advice. Firstly, I read that the SNB is only 90 to95% accurate. What about the missing 10%?  Did they get the wrong node? Should one do the SNB again? Or does the cancer spread directly into the blood, and if so , can blood tests detect it?

The cancer surgeon sent me away, and told me to come back in 6 months for a check-up. Seems pretty casual to me, considering the speed with which this disease works. Also,  here in Calgary, with a public health system, they will not authorize any scanning unless there is good cause, and apparently there is not at the moment.

My buddies are urging me to go down to one of the good cancer hospitals in the US. But what more can they do for me?  All this would be on my own nickle, and I understand that PET scanning is very expensive. Still, if it furthers the cause, I will byte the bullet and pay for it.

Any suggestions on the next step?

Springbok

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Joan's picture
Replies 9
Last reply 1/6/2011 - 5:19am
Replies by: Joan, dian in spokane, Vermont_Donna, Anonymous, lhaley

Hello,

I am newly diagnosed and 6 days ago, I underwent WLE and SLNB at both armpits. 5 nodes were taken for one side and that side i am experiencing burningin the arm pit and spreading down the inner arm towards the elbow. I have no sign of redness, swelling, fever, just this burning sensation. Has anyone else ever experienced this? Thank you

I will not stress over the things I cannot change

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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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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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I am happy to report that I just got home (in time for Christmas) following my reconstructive procedure on my heel after my Wide Local Excision of my melanoma. After my skin graft surgery, I spent 1 week in the hospital and 2 weeks in a rehab facility while being restricted to keeping my foot elevated at all times. Unfortunately, I am still in a wheelchair, but have recently begun physical therapy to get back on my feet again. 

At this special time, I would like to share a song of hope for all who are fighting melanoma this Christmas.

In the song "I heard the bells on Christmas Day"...the song begins with the author (Henry Wadsworth Longfellow) hearing beautiful church bells ringing on Christmas day. To me this represents the happiness, health, and peace of mind that existed prior to diagnosis.  

The author then reflects the despair that he is feeling...right at the height of the Civil War, after having recently lost his wife and just receiving news that one of his sons was injured in battle. "In despair I bowed my head...there is no peace on Earth I said...for hate is strong and mocks the song...of Peace on Earth, Goodwill to men." To me this represents the crushing feeling upon diagnosis that all hope may be lost...in facing one's own mortality (or that of a loved one).

The song then turns incredibly positive with the next line..."Then pealed the bells more loud and deep. God is not dead nor doth he sleep. The wrong shall fail, the right prevail with Peace on Earth Goodwill to men." In an instant...what seemed so hopeless...suddenly takes on a new and heightened optimism. The bells are then heard "more loud and deep" thus signifying that "God is not dead nor doth he sleep." This newfound optimism signifies that all is NOT lost. The next line suggests that this malady can and will be overcome..."The wrong shall fail, the right prevail with Peace on Earth Goodwill to men"... Thus leaving in it's wake a whole person...happy and healthy once again.

If you are in the midst of this fight (for yourself or a loved one), please seek out and listen to this song this Christmas. Note how a feeling of crushing despair can turn around in an instant to the feeling of incredible optimism and hope.

A particularly nice rendition can be found on YouTube by searching for (I heard the bells Mormon choir). It is impossible not to be uplifted when those bells start ringing "more loud and deep."

May this help to bring you hope, peace, and joy this Christmas.

Mark (Stage 2A) from California

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EricNJill's picture
Replies 2
Last reply 12/24/2010 - 4:32pm
Replies by: JakeinNY, nicoli

If you are battling Melanoma or caring for someone who is battling Melanoma, this book is a must read.  Joe Fornear battled Stage 4 Melanoma and was given days to live.  Now he inspires and comforts those who are going through the same battle.  Joe and his wife Terri have been such a comfort to Eric and I that I felt I needed to share this with you.  His story will give you hope.  I read his book in 2 days (only because I had to go to work or I would have finished it in one day!).

http://www.mystronghold.org

Jill N Eric In OH

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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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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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Vermont_Donna's picture
Replies 14
Last reply 11/23/2011 - 4:54pm

Hi,

Had Round two of Ipi yesterday. My oncologist thought he saw some pigmentation changes in my skin (looked me over with a blacklight) and he said that was encouraging. Also he did agree that all my melanomas (2 dozen or so) on my leg and the sub-q's are all bigger ie inflamed and that if we are thinking on the hopeful side this would be a good sign as tumors get inflamed before withering away.....of course the dark side would be I have more melanomas and the ones I have are bigger and growing. But we are going to choose to think positively! The infusion went well, I fell asleep again and my ffriend who drove me and my mom knitted and chatted away. once awake I had a reiki session and some lunch! Everyone is so positive and so warm but professional too!

My wounds are not cleaning up that well with the enzymatic debrider (Santyl) but we are going to try one more week before going to surgical debridement. I am having more pain in my calf and cant lay my leg on the bed to sleep, have to lay on my side with pillows between my legs to give "space" between my calves....cant have anything touch my calf as the wounds are too painful and throbbing. My oncologist drew two lines around one of the wounds...one round the really red part and the second one further out, around where the redness ends. If the redness exceeds the lines I am to go to two of my antibiotics a day instead of one and call him.

So thats the update. Wishing you a very Merry Christmas and Happy Holiday for those who dont celebrate Christmas.

Vermont_Donna

stage 3a, have done many different treatments, currently doing an clinical trial of "Ipi"

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