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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See:  http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/1931826

Best wishes to all fighting this beast...  Gene and Judy

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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CKasper's picture
Replies 4
Last reply 8/22/2011 - 12:37pm
Replies by: CKasper, LynnLuc, Janner

I met a woman the other day at the market and we got into an conversation about melanoma,

she said her brother was Stage 5.  Has there been a change in th staging system?

 

CKasper

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NicoleinVA's picture
Replies 5
Last reply 8/22/2011 - 12:13pm
Replies by: Janner, NicoleinVA, DonW, lhaley

I recently had WLE and SLNB; thankfully nodes were negative and margins are clear.  My surgery was preformed by surgical oncologist and plastic surgeon.

I am in the Hampton Roads area of Virginia (Newport News/Williamsburg) and my surgeon, Dr. Michael Peyer is the melanoma specialist in our area.  He recommends that I see him every 6 mos for 5 years as well as every 6 mos for skin checks with dermatologist.  This is the second time in 4 years this has melanoma has come back to the same spot and I'm concerned about reoccurrence, not in the same area as they took out alot of tissue, but in other areas of my body.

Any feedback of anything else I should do would be greatly appreciated.  I'm very diligent about sunscreen use now (I was not in the past), however at 44 years old this is a little late as I know I did alot of damage when I was younger.

As always, thanks for all your input.

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/22/2011 - 9:01am

Hello all - My first post.

17 years ago had mole removed on my back, which was melanoma. Last month had mole removed on my chest. metastatic melanoma. PET and CAT showed nodule on lung 1.5 cm. Both oncologist and thoracic surgeon said not Mets. It was. Surgery for Thursday for wider excision of chest mole at which I am NED.

Oncologist says do nothing but revisit every 3 months with scan. 20% chance it will never come back.

So, with 80% chance it will return, I am wondering if the wait and watch is standard protocol, or if I can be more proactive. Not that I want to do toxic treatment for nothing, but waiting is hard also. Thanks for your thoughts.

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Lisa13's picture
Replies 7
Last reply 8/21/2011 - 10:25pm

I'm 9 days into my ipi treatment and in the past 2 days have noticed irritablity BIGTIME!  I'm inpatient and very moody which is unlike me.  It's not all the time, but I have noticed something different about me. I know ipi can cause glandular problems which can cause irritability, but I don't think this would happen so qucikly. I don't really know if this is just me or the drug. Has anyone experienced this?

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Angela C's picture
Replies 2
Last reply 8/21/2011 - 8:57pm
Replies by: Jackie W, Goddard71

Hello.

I am scheduled for SRS to a brain met and I'm having it two days before my 30th birthday. We have plans for my birthday and I'm worried that my face will be all swollen, and I've also heard that it can cause brusing. I just wondered how many of you experienced this and if there is anything I can do to try and lessen the swelling and bruising?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Jamietk's picture
Replies 8
Last reply 8/21/2011 - 7:49pm

Just posting to give a little hope to stage I and stage II (and any stage really). This week or next, can't remember which, is my 6 year anniversary. Isn't that great that its been so long I can't remember the exact date in August? I was dx borderline stage IB/IIA (2.0 on one path, 2.1 on the other), SNB neg. I'm pretty sure I'm NED, as I had a CT scan in June due to abdominal pain (turned out to be an abcess on my ovary and a major pelvic infection, which was all removed by a Gyn Onc and no cancer found). I go to MDA in October to gain my official NED status.

Here's hoping for many more years of NED for all of us.

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dutchchic's picture
Replies 2
Last reply 8/21/2011 - 7:35pm
Replies by: BarbieGirl

Just wondering if anyone knows the best Melanoma Oncologist in the Dallas area?  

 

Thx!

It's all about the TUDE! Is Jesus driving your journey?

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~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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Gene_S's picture
Replies 12
Last reply 8/21/2011 - 6:21pm

Update on Gene:  The inoperable tumor on the head pushing on the spine is gone and has new cell growth on the spine, the big one in the liver is 75% shrunk,  the one in the lung is gone and all the others in the liver have greatly shrunk or totally are gone. 

Hopefully by week36 he can be NED.

Now that is some great news. 

Thank you all for your prayers we both really appreciate them.

Judy wife of Gene_S stage IV since Oct. 2010.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I am excited for the first Music City Miles For Melanoma event which will be held Saturday October 8th at Richland Creek Greenway.

If anyone is interested in volunteering for the event, whether on the planning committee or as a day of volunteer, please e-mail me at kwest@melanoma.org

If y'all are interested in participating, please check out this event's First Giving page at http://www.firstgiving.com/melanoma/musiccitymilesformelanoma5k

 

Thanks!

Kristina

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If anyone is interested in participating as a day of volunteer for the Morristown Miles For Melanoma event, please e-mail me at kwest@melanoma.org!

The event will be held in Morristown, New Jersey on Sunday September 25th.

If you are interested in particpating in the 5K, please visit http://www.firstgiving.com/melanoma/milesformelanomanj to register!

 

Thanks!!

Kristina

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Jewel's picture
Replies 3
Last reply 8/21/2011 - 2:50pm
Replies by: Vermont_Donna, Phil S, Jewel

I have been coming to this board since Nov 2010 when my husband was first diagnosed with melanoma. Lower left calf Nodular, 3.6mm, Clark Level IV, >10 per high power field, Vertical growth present, Vascular invasion present, Microsatellites present. He had a WLE with clear margins. Oncologist chose NOT to do a LND due to the fact that he feels it does not improve OS. We chose to watch and wait because my husband likes the idea of keeping his immune system strong. Did normal protocal when in June of 2011 when he was having Hip Resurfacing performed I noticed in the hospital that he had some new spots on his original site. Fast forward to July and they discovered that he had 3 local recurrances in the original site, after a PET scan and 2 MRI one on the brain and one on his leg it is showing only in the same original spot. He also has one node that showed up on his left groin. We are now scheduled to have another WLE performed with a skin graft and a LND. Our Dr said that they prefer not to just needle the node due to fear of spill. Now I asked our ocologist about treatment, and he said he was pretty sure that my husband could be "cured" again. We all know deep down what that means. My husband and I are from the Adirondacks and my husband is comfortable with our regular oncologist and doesn't want to change. My husband is incredibly optomistic and always has been....he knows he has cancer....but refuses to let it run his life.

What should we be doing different?

Thanks to all of you, you are all so incredibly brave and strong!!!

Best wishes

Cammy& (Ken)

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Jan in OC's picture
Replies 4
Last reply 8/21/2011 - 1:25pm

I have been at MD Anderson since 5 am...just got back to the hotel (after 8:30pm).  The surgery went good, the doc removed one tumor 10mm x 10mm from his left frontal lobe and he was pretty sleepy and in some pain (big headache). 

The Neurosurgeon also delivered some bad news that I have not been able to speak to Dirk about yet.  Last week's MRI showed just one large and 3 small mets in his brain.  Last night's pre-surgery MRI showed 8 small mets now.  I had a few tears and lots of cursing in my mind.  CRAP!   I will get the results of the post op MRI in the morning.  We will talk to Dr. Papa on Monday and decide where to go from here.

Our UCLA Oncologist (Dr. Chmielowski) called today to check on him and said that he was glad that we were at MD.  He said it was the best place for Dirk right now, so I just need to stay positive and believe that we can beat this latest set back.

To Desiree, I sent you an email with my phone number...look for a message from oldhippielady50@yahoo.com!

Thanks everyone for your prayers and support.  I am very grateful that to the wonderful people on this board.  You have kept me sane!!

Jan, wife to Dirk, stage IV

laughter is the best medicine

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AZ_Gal's picture
Replies 6
Last reply 8/21/2011 - 2:17am
Replies by: AZ_Gal, mombase, lhaley

RecOvery is going pretty well no major complaints but the healing process kinda sucks. At 8 days post op I had to unexpectedly have my sutures removed from my WLE bc according to my local pcp (not my surgeon) I was having some sort of allergic reaction to the stitches. Since then I have been paranoid of doing something and having them reopen... Probably a long shot but I definitely don't want to go through more stitches. My SNB site is healing nicely except the steri-strips they used came off way early because how the heck do you keep your armpit hair from growing and pushing them off. Lol. I do have a ping pong ball size hard lump at the SNB site and will have my surgeon take a look on the 18th when I go in for a post op visit.

Oh did I mention that everything came back free and clear of cancer cells? Yay!!!!! I know that it could rear it's ugly head anywhere at anytime but for now it is a comfort knoing it is gone from my body and I get to be here and not be sick for a little bit longer.

Just thought I'd give y'all an update. Thank you guys for all the love and support; I REALLY APPRECIATE IT!!!!

-Kim

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