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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dian in spokane's picture
Replies 2
Last reply 12/1/2012 - 9:17am
Replies by: DonW, vivian


Well, I know some of you will bre  curious about my treatment, so I'll tell you all about it now. Last week I went in for radiation 'set up', which mostly just consisted of some measurements being taken while I was lying flat on a metal table, just like the table any of you might have been on for a ct scan or mri. A CT scan was used during this where they tracked the movement of the nodule in my lung while they were doing the measurements. I also got three tiny tattoos, used for targeting purposes, one on each side of my chest and one right in the center.
Yesterday was my first treatment, it was easy and painless except for the problems I have lying on my back. BUT, since I was allowed to eat a regular breakfast, I took a pain pill, and followed that up with an anti anxiety pill on my way there. So that helped me relax enough that the back didn't start hurting till right at the end.
Today, I was, of course, on the same kind of table, but the machinery was quite different. THIS is the actual machine they used:
It was easily the simplest and most painless thing I've ever done to fight my melanoma, not even as stressful as a PET scan. I had to do no kind of preparation, no restrictions on my eating the day before or that morning, I just had to lie there. The machinery moved around me, and occasionally moved once in a while the table was rotated, but mostly the arms of the machine moved around me.
The first half of the time in there was mostly scanning. they have to follow the way the tumor moves with breathing. The arms rotate around and shoot their radiation beams into you from many different directions (16 I am told) and for those who asked, there is indeed some laser involvement, but used for aiming an targeting. The radiation crew, while all this is going on, is out in another room, a big U shaped room that looks like the bridge of a spaceship, with all kinds of computers, and one with a big view of the room and me.
I kind of felt like I was in a space ship too. With some futuristic fullbody tricorder. just an illusion. It made robotic noises, like R2D2, and it was over right about the time my back was starting to hurt me.
Because this is unlike traditional radiation, the side effects can come faster and I'm told I could start having some early side effects, in terms of fatigue in the next couple of days. I did interferon back in 03/04 and can't really imagine any fatigue being worse than that, so I'm prepared. Other more serious side effects like, sore throat, skin burns, esophogitis and such could come later, but really I could just get away with minimal side effects, so that's what I am looking forward to. But I'll keep you all posted on the timetable and severity of such things
I have 3 treatments next week, mond/wed/fri, then one on the following monday. It will likely be 2 or 3 months before we scan again to see if this therapy is working. And hopefully it all goes without a hitch, I'll be ready for camping by april!

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Anonymous's picture
Replies 0
dellriol's picture
Replies 7
Last reply 12/2/2012 - 9:28am

Since my stage IV diagnosis in February, I have managed to stay very positive.  I've come back a long way from not feeling the right side of my body, to swimming laps, riding horses and babysitting grandbabies.  But these holidays are HARD!!! The uncertainty of what my future in this battle holds really gets me down. I realize, and keep reminding myself, that nobody is guaranteed another day, but I also know my prognosis.  It doesn't help that I watched as cancer took my Mom and my father-in-law.  Most o the time I'm good, but a song triggers a memory, or my grandson's smile makes me think how bad I want to see him grow up, and I melt down for a few minutes before I can pull myself together.Are others feeling the same stress? 

This ain't no hill for a stepper.

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POW's picture
Replies 4
Last reply 11/30/2012 - 12:41pm
Replies by: Gene_S, awillett1991, Anonymous, lhaley

My brother (Stage IV with brain mets) has had many CT scans and MRIs but never a PET scan. Nobody at the VA or at Moffitt ever suggested one. Is there any particular reason to use PET vs CT vs MRI?

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DeniseK's picture
Replies 1
Last reply 11/29/2012 - 3:30am
Replies by: LynnLuc

I was just told about this, haven't done much research yet. I was curious if anyones heard of this and any success stories.

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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cookiemom's picture
Replies 4
Last reply 11/30/2012 - 10:47am

Thinking of you and wish you the best tomorrow.

Sincerely,   Cookiemom

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Fen's picture
Replies 3
Last reply 12/26/2012 - 5:28pm
Replies by: bigb0624, Fen, dellriol

I apologize for taking up space for an unrelated issue.  I need to find a decent derm in St. Louis - not necessarily a melanoma specialist, just someone who is good who a relative can get to see quickly.  Anyone have any suggestions?    Thanks in advance.    Fen 

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DeniseK's picture
Replies 14
Last reply 11/30/2012 - 7:09pm

Hello everyone! I hope everyone had a great Thanksgiving. I found out Monday morning that I was BRAF positive!! Todays my birthday so I feel like i got my gift early. I've decided to start z asap. I am still going to look into trials but I feel like I need to start something. The last couple days have been pretty rough on me. I'm seriously short of breath and have been experiencing a lot of pain in my back and ribs. I think the lung tumors are growing quickly and I don't feel like I have the time to wait for getting into a trial. I meet with the onc tomorrow to go over side effects, although I feel like I understand what to expect by reading here. About how long does it take for side effects to kick in? Any advice? Do you lose all your hair? Its not like it matters but I want to be prepared as to what expect.

Thanks, Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Gene_S's picture
Replies 3
Last reply 11/29/2012 - 11:58am
Replies by: Tina D, POW, Amanda

Copied from my email




Join us for a Webinar on

Friday, November 30th


We are pleased to bring you another cutting edge webinar that will empower your knowledge about melanoma therapy, in particular PD1.  Antoni Ribas,  is a physician-scientist conducting laboratory and clinical research focused in malignant melanoma.  He is a brilliant researcher, and a compassionate physician.  He has earned MIF's Doctor of the Year Award for 2013 and is a MIF Scientific Board Member.

Join us on Friday, November 30th at 11:30 AM EST for this exciting slide show presented by Dr. Ribas and hear patient questions answered through the moderator, MIF President and Founder, Catherine Poole.




 Please send any questions you might have in advance to



PD1 Therapy Update


Friday, November 30, 2012


11:30 AM - 12:30 PM EST


After registering you will receive a confirmation email containing information about joining the Webinar. 

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

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susanr's picture
Replies 11
Last reply 12/3/2012 - 4:37pm

Hello Everyone.  Just wanted to ask for comments/experiences from my friends on Clinical trials..any trial for Stage IV.  Trying to get my brother on a trial but I am afraid his weak state will be a factor that they will exclude him.  Have any of you or know of anyone that particicpated despite the ECOG/Perfomance status....He is able to do daily activities of daily living...shower, eat, hygiene, dressing himself....BUT...not able to walk fo long period of time.  Just going for his appts. is tuff and exhausts him.  Also, most tell me the trials are easier to handle than doing chemo.  They experienced less side effects---lethargy, fatigue..etc.  Were you at the worst stage of this" beast of a disease " and still got accepted into a trial.

Thanks for your time and comments.  You all make this nightmare that I am living easier by your help.


THANK YOU !!!!!!!!!!


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Snickers60's picture
Replies 12
Last reply 11/30/2012 - 8:11am
Replies by: Tina D, Snickers60, mel123, Anonymous

The way Wayne found out he had Melly Mets was through a calcium scan for his heart.   His family drops dead from heart attacks.

Anyway, we knew he needed to follow through as soon as there was a break in the nightmare since March12, so we finally went in to haveHEART CATH after he had a small event on stress test.    The man had a 95% blockage in one artery.   The others were fine, but we almost fell out.     He went in hospital last week and had the rotor rooter and they did one stent in that artery. 

GOODNESS - that was CLOSE after fighting like Trojan's with Melly. 

Be alert to the rest of your's not always MELLY and the TREATMENTS causing the symptoms.  



Nancy (devoted wife of 3 X Warrior Wayne)     



Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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bekahboo82's picture
Replies 1
Last reply 11/27/2012 - 12:20am
Replies by: Janner

I was recently diagnosed with a Lentigo Maligna Melanoma (in-situ).  Plastic Surgeon obtained 5mm margins which came back clear.  I am finding some conflicting information on wether these margins are sufficient.  My Melanoma-in-Situ from 2009 was also clear with 5mm margins.  Is there a difference in recommended margins for Lentigo Maligna and regular Melanoma-in-situ?  I am worried now that I need to have more taken from the most recent site as well as from the 3-year-old site.  Any suggestions/insight?

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doriniel's picture
Replies 11
Last reply 7/21/2013 - 12:35pm

I am currently on zelboraf but I'm considering switching to yervoy. Is there anyone who has continued to work full time while on yervoy or are the side effects too much? Right nowIi am working two 12 hour days a week. I'm wondering if i can continue this if i go to yervoy infusions. 

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sharmon's picture
Replies 14
Last reply 12/1/2012 - 7:33pm

I can't write and explain like some of you can.  I read here daily and feel a connection here that I don't feel with family and friends.  Brent is my life and we are going through some bad stuff right now.  His pain is a 10 and the doctors here are going to do a radio frequency ablation to the nerve that is causing the pain.

I asked earlier if anyone has had any success with this kind of nerve block and not one person responded so I guess i am on my own with this proceedure as far as what to expect or watch out for.  . 

It is hard to reach out for comfort and when I am in the heat of the battle so to speak with no road map it is downright terror.  Nights in the hopsital alone are the worst.

He is fighting with all he has right now and the next infusion of the drug is at week from tomorrow.  He has to make that appointment for the infusion.

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audgator's picture
Replies 4
Last reply 11/26/2012 - 10:11pm
Replies by: Bubbles, audgator, kylez

To recap, I was an unsuccessful Yervoy patient and went almost straight into an anti-PD1 trial. I did the 2 rounds of infusions every 2 weeks for 12 weeks each, ending almost 3 months ago. So I am a week away from my first maintenance infusion.  I have had intermittent itching ever since the Yervoy. It subsided somewhat but has been mostly on my shins/calves.  The last few days it has appeared on my upper arms worse in the tricep area. Are others experiencing a nomadic rash and/or a rash lingering this long after no infusions for 3 months?  Any opinions on whether this is still a Yervoy side-effect or more likely from the anti-PD1?   Dan

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