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
Replies 28
Last reply 1/3/2011 - 8:33pm

How many people here with melanoma also  have red hair, blue eyes and have fair complexion? Just curious about how many actually fit the stereotype for high risk of melanoma. I have read it has something to do the with melatonin. Thank you

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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I have a friend who is stage 4....been complaining about pain in her gut since spring and her onc and pcp always caulked it up to something else other than melanoma...well now her scans are in and finally they have decided its a 5 inch spot of melanoma....they are talking surgery...wondering about something...can they radiate the intestines? She is weak and no longer in the chemotherapy trial ( heavy duty stuff)...just wondering...

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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KellieSue's picture
Replies 3
Last reply 12/30/2010 - 7:30pm

After finishing my second clinical trial(ALT-801) on Dec. 17 I had my CT scan on the 28th.

My neck nodules all look stable(thyroid involvement) but there seems to be some new lung nodules in both sides. We're not sure if they were there before, we never saw them but they could have been small I guess?

My oncologist seemed pretty bummed considering after my 1st trial I had immediate response, everything was either gone or very much shrunken.

He's not completely convinced the lung nodules couldn't be acting up in response to the treatment and with my next set of scans in 4 weeks could be completely gone. I'm really really really hoping that is the case as my neck has gotten swollen on the outside qutie a bit since finishing treatment and that doesn't seem to be bigger at all on the scans.

It's just a little hard to take to hear there are some new things on the scans when I just finished treatement. I have my Brain Mri today just to rule that out. Of course I've been convinced as of late that I have something in the brain. Some little headaches that come and go, forgetfullness, writing the wrong check to the wrong person with the wrong date. I know all of these things are normal everyday occurances, it just makes my mind go to bad places when I'm dealing with this crap. I know you all understand where I'm coming from.

Anyway, headed to brain mri now, hoping that this is all a product of swelling and the treatment still working. Thanks for reading my novel.

 

Kellie, Stage IV hoping to be NED?

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Wendi Lynn's picture
Replies 9
Last reply 1/3/2011 - 2:48pm

So, I know there were quite a few folks that started the one month HD Interferon around the same time as me.  Yesterday was my last HD and I'm SO GLAD it's over.  Lots of side effects, more sleep than I've had in months but I'm done!  I'm hoping that everyone else came through ok!  I also wanted to say thanks for all the advice and nice words.  Every little bit helps!

On to the next challenge!!!

Wendi

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EricNJill's picture
Replies 5
Last reply 12/30/2010 - 8:57pm
Replies by: JakeinNY, bcl, Joan C, KellieSue

http://well.blogs.nytimes.com/2010/12/28/the-tans-that-bond/

Warning: This article is truly disturbing!

227 female students surveyed, almost 40 percent had gone to tan for the first time with their mothers.  Are you kidding me?

Obviously, we need more information out there in the media about the dangers of tanning.  If they could see what a person with Stage 4 Melanoma goes through, maybe they would think twice.  Is it really worth it?  You may have a "glowing" tan but that tan could turn to tumors and death later...

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Anonymous's picture
Replies 4
Last reply 1/5/2011 - 11:34pm

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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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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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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EricNJill's picture
Replies 9
Last reply 1/8/2011 - 2:36am

Eric has decided to donate his body for research to a local medical college.  After reading the article in the New York Times, we wondered if there was some place that he could donate his body where it would specifically be used for Melanoma Research.

Thanks, JillNEric In OH

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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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