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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POW's picture
Replies 3
Last reply 3/14/2013 - 11:14am
Replies by: Tina D, Janner, Cielo

PBS Newshour broadcast an important segment last night titled: "What happens to your online accounts when you die?" According to this report, there are few laws-- and no consistent laws-- about how executors can get information about or gain access to online accounts. This hit me particularly hard because I handle all of our finances and they are all done online-- not only checking and savings but also investment accounts, retirement accounts, everything. My husband knows I do this, but he has no idea how to do it himself and he is completely uninterested in learning. For most of these accounts, they do not even send out paper statements anymore so how will my heirs even know they exist? The financial institutions do send me a notice that my monthly (online) statement is now available, but the notice goes to my (password protected) email!

My brother's first symptom of melanoma was a stroke. He was taken to the ER where they determined that he had had a stroke, then found that the stroke was caused by a bleeding melanoma tumor in his brain. Unfortunately, the stroke itself damaged his memory and he could no longer remember the passwords to his accounts or the combination to his storage locker or anything. Fortunately, he was still alive and mentally competent so I was able to work with him to re-set everything. But the whole process took several months.

So just a word to the wise that if you have online financial accounts or Facebook or email or Picasa or whatever, be sure to write down the account information and put it in a safe place. If you don't want to share it with anyone right now, at least put it in a safe deposit box that your executor will be able to access. And if you are an executor, be sure to check the free websites for "unclaimed money" as described by consumer advocate Clark Howard ( http://www.clarkhoward.com/news/clark-howard/personal-finance-credit/finding-and-claiming-missing-money-easy/nCySp/ )

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ncdaniel's picture
Replies 6
Last reply 3/13/2013 - 12:34am

Since my the Melanoma in my wife has spread from her head ( Removed 2011 11.5 mm deep ) to her lungs in July 2012 meta sized to lung multiple spots with tumors a needle biopsy was done in 2012 of her lung tumor.The sample showed Melanoma (no surprise) but the sample was not big enough for Braf testing, The assumption was made that since her original tumor on her head was tested not to be  BRAF receptive so would her lung tumors. My question is should new samples be taken and tested? I have just read on this site about NRAS testing should this be done?  I am not sure I even understand NRAS but any thought would be appreciated. I know most of you are not medical people but living this makes you one pretty quick. Any advice would Help. My wife has had IL2 - not a responder, and had one dose of IPI /Yervoy and is now on high dose steroids 80mg now 60mg due to issue not sure when or if Yervoy will resume anybody with any experience with this?

Daniel

Trust in God - Live one day at a time

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Colleen66's picture
Replies 20
Last reply 3/13/2013 - 10:08am

 

My head is spinning, anxiety is over the top, depression kicking in.  Spring cleaning all days to give my mind a rest.  Could really use the chat room.

Colleen

Live!

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dian in spokane's picture
Replies 3
Last reply 3/12/2013 - 8:46am
Replies by: Anonymous, Colleen66
steelergirl's picture
Replies 3
Last reply 3/13/2013 - 5:01pm

I am having a broncoscopy with a needle biopsy tomorrow to see  and probably also lymph nodes removed from around my windpipe to see if my cancer is back, or to defintely be diagosed with sarcoid.

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swissfarm7's picture
Replies 5
Last reply 3/13/2013 - 2:14am
Replies by: swissfarm7, buckytom, Janner

Hi, all!  Hans is 4+  months through his year-long interferon treatment.   This comes after his Stage 3B diagnosis last July and subsequent lymph node dissection.   Compared to many people, his side effects have been manageable.  He's lost 25 pounds (and was trim & fit to begin with, so he didn't have weight to lose) and is generally more fatigued, but he's continued working on our farm and takes on occasional ski day. 

His white blood cell and neutrophil counts have been critically low for quite some time, so his dosage was halved.  The counts have continued sinking, though, and he now needs to consider stopping the treatment temporarily (or permanently) or taking another drug to treat the neutropenia.  His local oncologist recommended neupogen twice weekly.  I've heard of people with other forms of cancer receiving chemo and taking neopogen.  I read that leukine might be more appropriate for melanoma patients. 

Anyone have experience with this and care to share your thoughts?  As in the past, I'm not asking for opinions on interferon treatment, though I have no doubt someone will feel the need to comment to that end. ;-)  I'm specifically looking for info on neutropenia and the drugs mentioned above.  Thank you!

Best,

Colleen

Keep on keeping on.

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mary55's picture
Replies 9
Last reply 3/12/2013 - 2:25pm

Laurie died on February 28 surrounded by her family.  Her last posting here was about donating her body to science, which we were able to do.  Laurie often shared her postings here with me, her sister Mary, and I know how much this forum meant to her.  Thank you all for the support, companionship, information and courage you all shared with her.  Your final postings to her in January were lovely and a real tribute, and she got to read them.  with gratitude, to the warriors online from Laurie's family

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Tamils's picture
Replies 9
Last reply 3/12/2013 - 11:45am

My father was diagnosed with stage iv melanoma last November after a lump in his skull turned out to be melanoma.  They could not find a primary on his skin.  He had had a spot behind his retina for 20 years or more, which had undergone a very tiny change, but an eye specialist ruled out ocular melanoma.  After his surgery to remove the skull met, his scans were clear.  Fast forward to his latest scans from last week, and he has two spots on the right lobe of his liver, as well as apparent lesions on various bones.  Today his oncologist, in combination with a different eye specialist who hasn't seen him for nine months, says that it's ocular melanoma, based solely on the fact that it has metastasized to the liver.  I'm not convinced it's OM.  Has anyone else had a fairly rapid met to the liver with an unknown primary, that wasn't considered OM?  I will cross-post this to the Cure OM board as well.

The doctor also said that the mets were progressing too rapidly for ipi or IL-2 to work.  He is B-RAF negative.  She recommends Temodar but says it isn't much use.  We are collecting his records as quickly as possible to get a specialist's opinion.  He is otherwise in pretty good health and is in no pain; sure ipi can take awhile to work, but don't some people respond within a month or two?  I am also looking at clinicaltrials.gov.  Any comments on treatment would also be appreciated.  Thank you so much.

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hbecker's picture
Replies 4
Last reply 3/12/2013 - 8:56am
Replies by: hbecker, swissfarm7, _Paul_, POW

The post last week entitled "death and courage" made me think a lot about this situation we find ourselves in - as I'm sure it did many others who read and post here. I've been participating in this discussion group for 10 months now, and I don't think I have taken any other posts quite so personally in all that time. It helped me come to terms with some of the aspects of caring for and about my husband that so often go undiscussed between us. We have lasted through 42 years of marriage without talking about some important topics that hang in the air between us. Through the years I've learned to be more self-sufficient emotionally, and to understand that even though he doesn't share some of his inward feelings with me, it doesn't mean he's not feeling them. If we had not learned to accommodate each other's divergent styles, I'm fairly certain we would not have stayed together so long. I hope the patient who posted those thoughts has come to a better place by now.

Last week's anonymous post came at an interesting time for me. We have recently finished the GVAX trial at Hopkins. Now it's time to see what's next in our lives. I've written about that on my blog, and rather than repeat those thoughts here, I invite other melanoma survivors and caregivers to read it there.

Hazel Becker
blogging at www.hazelbecker.com

blogging at www.hazelbecker.com

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Hello fellow warriors!

I am a stage 3 melanoma survivor doing several small fundraisers for MRF throughout the year. I'm looking for women whose lives have been touched by melanoma (either directly or indirectly) who could help me with my fundraisers. The time committment is very minimal and it does not matter where you live.  Please send me an email for more into at welgetracy@gmail.com and put MRF Fundraising in the subject line.

Thanks for your help!!

Tracy Welge

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dian in spokane's picture
Replies 8
Last reply 3/12/2013 - 10:03pm

I've read a ton of tips and talked to a lot of people and I think I'm ready. I'm geared up emotionally for it. And I've been sort of following MarieM's great advice on prepping my skin for it, which includes baths in water with oil, and thrice daily smearing of Eucerin over the whole body. My skin is as soft as a baby's. Hopefully that will ward off some of the worse of the peeling.

Today I am going to buy some Biotene products, and after rereading KimK's harrowing description, I think I'll stop in the baby dept. and buy some Butt Paste. :)

MANY people suggest that I take , easy to eat, easy to digest, handy food with me to eat during times of hunger instead of waiting for the hospital food. I'm wondering if anyone has any suggstions about such foods? Also.. Jane's tips suggest that one get a protein powder you can mix with water. When I went to the vitamin shoppe, they immedidately recommended regular Whey Powder, which I use in my morning breakfast shakes. That made me gag and I'm not even in the hospital yet.  I wonder if anyone knows if there is some kind of LIQUID protein that can be poured into water?

My doc says they will be inserting a Picc line, instead of a Port, because they've found it reduces infections. I was scared about a Port, which I've so far avoided getting, so I am happy about that. Though I seem to remember that the last time I had a Picc line it didn't go that well either.

Even though I know that the biggest dangers are serious, like heart failure or kidney failure, the things that I'm most anxious about are more mundane. Like..skin reactions. I break out from having a hot bath, or wearing a bra, or..just driving through texas, I'm worried about the rashes. Anyone have any suggestions for a non steroidal anti itch cream?

And my other mundane concern is my back! I have a...35 yr back ache. It's something I have learned to live with, aned part of that strategy is never sitting too long, never standing too long, never walking too long, never lying in one position too long. You get my drift. I can commonly end up in pain just from sleeping on a strange hotel bed for a couple of nights, so I am worried about what 6 nights in that uncomfortable looking hospital bed will do to me.

I do heart stress tests and pulmonary function tests this coming Thursday (the 14th) and go into the hospital to start treatment on St Pat's day.. a lucky day for me!

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Lacey11613's picture
Replies 1
Last reply 3/11/2013 - 12:36pm
Replies by: WayneG

23 yrs old, diagnosed in January after finding a spot on the back of my left ear. Will be having a WLE, reconstruction, and SNB next week. Wondering how long recovery typically takes? Can't really find much about melanoma on the ear so sort of in the dark.

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Lacey11613's picture
Replies 1
Last reply 3/12/2013 - 8:28am
Replies by: ruby

23 yrs old, diagnosed in January after finding a spot on the back of my left ear. Will be having a WLE, reconstruction, and SNB next week. Wondering how long recovery typically takes? Can't really find much about melanoma on the ear so sort of in the dark.

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aldakota22's picture
Replies 11
Last reply 3/22/2013 - 9:16am

Sunday evening marked my 1 1/2 year  anniversry on "Z".Proving that there is a fighting chance to live with stage IV.Keping my PMA that this is only a small milestone.My posts here have been to offer hope to fellow fighters.My side affects have been tolerable,with the worst being bouts of the runs and gas.Scans in Feb still show almost at the NED status but officially not there yet.An area of concern did show up on brain MRI but the doc is waching closely with another scan in mid April.The other issue of concern is a low iron count.No real explanation as after a colonostopy & endoscopy revealed I have Acid Reflux Disease which did thicken the esopaghus.On iron supplement and a acid reflux med.I pray that with all the new research that very soon all of us here will find the right treatment to collect our Entitlement (Social Security-something we paid for) for a very long time.With Gods help and todays medicine we will all Beat the Beast . AL                                                                                                                                                                                                                        

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buffcody's picture
Replies 6
Last reply 3/12/2013 - 4:18pm
Replies by: kylez, audgator, buffcody, Anonymous

I'm 10 weeks out from my last ipi infusion but my itching and rash has reached their height (I hope) the last week or so.  My doctor's office has recommended Sarna, though they also earlier had recommended an over the counter cream containing cortisone.  I wonder if any of you have had similar long term side effects after ipi and if you found some other over the counter product that gave more relief. Or prescribed?  I'm trusting that still experiencing these kind of side effects after 10 weeks eans that my immune system is still actively fighting the melanoma not just giving me problems.  Next set of scans in two weeks.

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