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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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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First Thanks to those that responded to a previous post about Yervoy reaction. AS stated make sure your Doctor knows Yervoy. My wife suffered because  the doctor we used was not experienced. I gained more knowledge her than my wives doctor knew about Yervoy. Thanks to all who educated me on Prednisone, Endicott, Remicade. Great help.

My question for those that have taken high doses of Prednisone  80 to 100 mg.  how fast were you able to reduce in order to resume Yervoy treatment? I have been told it needs to be reduced below 10MG to get a dose. My wife went to 80mg to settle her reaction to Yervoy first dose. How fast has anyone reduced after stable reaction.

 

Thanks,

Daniel

Trust in God - Live one day at a time

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Amanda's picture
Replies 6
Last reply 3/27/2013 - 11:20am
Replies by: Anonymous, Amanda, Pat-Wife of Carl, Tina D, POW, Owl

March 9th, 2012 randy was diagnosed stge IV, with no primary.  Lung  and brain lesions, and another tumor in chest wall.   Today marks a year, and he is still here.  Man it seemed like that year flew by...He first had radiation and a craniotomy, followed by the rest of the radiation, then yervoy...now he's had two doses of merk Anti-pd1 and is doing great.  Tumors  have stabalized.  Plus, we just took a 3 day trip to las vegas.  I pushed him up the stirp and through the casinos in his wheel chair, because there's no way he could handle that much walking. (He's still not been able to gain a lot of muslce back after losing a ton of weight from a tumor obstructing his bowel.)  Vegas is kind of wheel chair INCONVENIENT ...not in accesible...but a pain in the butt!  It was worth it though.  Hope everyone is doing well out there tonight.  good health wishes sent to you all.

-Amanda-

"Give thanks in all circumstances"

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Cielo's picture
Replies 6
Last reply 3/10/2013 - 11:00pm
Replies by: Cielo, kylez, POW, Janner

Can anyone who had these kinds of treatments please tell us about it? My husband has brain mets and we would like to be informed ahead of time before we see doctors next week.  These were suggested by our Oncologist for possible treatments.  We have sleepless nights, trying to decide what's best. We haven't lost hope and my husband wants to keep fighting but can he endure the treatments.  He is 66 years old and very weak.  He has been on Zelboraf for eleven months.  MRI lately showed metastases to the brain.  Scans on chest, pelvis and abdomen showed healing and stabilizing.  Thank you.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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tony9511's picture
Replies 8
Last reply 3/12/2013 - 8:26am

I am due for my second surgery in less than a year.  The melanoma came back on my right shoulder, the said it was stage 2 clark level 4 when they did the WLE at the VA the first time.   Now its back, don't know the depth etc.  I am just frustrated and very depressed......and very depressed for anybody that has to battle this cancer.  I guess everything happens for a reason right?  I have thousands of questions in my mind.....what if I was stage 3 etc the first time.  I do trust my oncologist, but you always wonder when its the VA.  I had a resident do the punch biopsy.  Anyway just rambling.  God bless anybody going through this. 

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doro's picture
Replies 7
Last reply 3/16/2013 - 11:02pm

Hi all,

 My dad (in his 60s, Stage 3c) came down with diverticulitis after a week on interferon; fortunately, antibiotics seem to be working to reduce the inflammation. The oncologist said he can't be sure that interferon is not the culprit so he doesn't want Dad continuing with it.  This leaves us wondering about possible treatment options and, as a secondary question, how this recent illness may affect his ability to get into clinical trials. It seems like side effects for most treatments involve potential bowel/intestinal issues (e.g., ipi and colitis). We are supposed to talk with the oncologist again in a couple weeks when the inflammation has further subsided.

Does anyone have any experience with diverticulitis or thoughts/suggestions on how to procede or ideas to bring up with the oncologist? We know at his current stage there aren't a lot of approved treatment options. There don't seem to be a lot of clinical trials out here - there are a couple for ipi (vs interferon) and braf/mek (with a placebo) but we aren't sure those seem appropriate.

Thanks!

Doro

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mark d's picture
Replies 5
Last reply 3/9/2013 - 8:44pm

I was diagnosed with nodular mel. on Feb 1. I had surgery on the 27th to remove my earlobe and SNB in my neck. Well one node came back positive and I have to get my neck completely cleaned out now. The only treatment I am authorized is interferon because the Army only approves that right now. I just want to know how others have reacted with this treatment. How sick were you. How successful were you. How many treatments were given. Since my Mel was on my ear it is kinda difficult to treat with conventional methods. Thanks for the info and this site for support.

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