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.

Expand/ Collapse Topic
Replies By
View Topic
Simmy from Oz -Melbourne's picture
Replies 9
Last reply 4/24/2011 - 12:29am

Hi there everyone,

Ive been taking RO5185426 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of RO5185426, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (55kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY?? 

oh, also while im here, has anyone experienced nerve damage in their legs and feet after having them blow up with fluid and then drained very quickly?  its like i have constant cramps in my calfs and an aching kind of pins and needles in my feet.  i cant walk properly and its extremely painful.  this all happened before i started taking R05185426, so it cannot be a side effect. 

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

Login or register to post replies.

mommydog's picture
Replies 1
Last reply 4/23/2011 - 9:35pm
Replies by: Janner

What exactly does "tumor burden" mean? 


Stupid in Sacramento

Login or register to post replies.

himynameiskevin's picture
Replies 12
Last reply 4/23/2011 - 8:14pm

Well, it's midnight, I just got home from a long day of shuttles, flights and airports. But before I lay down to sleep, an update:

So.., I had another solo trip the NIH in D.C. on Tuesday for my forth round of monthly scans. One day of traveling, one day of bloodwork and scans, and today, the doctors visit followed by the traveling home. And this months results are..

Things are still shrinking. At a snails pace. But still shrinking. There is nothing new and my brain is still clear.
Not a cure, but great news nonetheless. My doctor did mention that it appeared that one might be a little bigger, but because it's so small, and since all the others are shrinking, she thinks it most likely just seems like that because of the way the CT scan image was spliced. I go back in another month and see what they have to say about it and the others.
She said not to worry about it. ...I'm sweating bullets.

Each month I really hope and pray for some... bigger number I guess, of percentage down or tumors disappeared. (as we all do I'm sure)
But it seems each month, the progress has been getting slower and slower, and I'm a little worried about the months to come. :/
We'll see. I guess I'll cross that bridge when I get there. I try to remind myself, that just 6 months ago this stuff was spreading out of control and I would've done just about anything to get it to pause, even if only for a day. And I guess I'm pretty fortunate and should be happy to be where I'm at right now, even if it isn't where I hope to be someday. And I can't rule any possibilities out. From what they've told me, they've seen just all sorts of reactions in different people, different timelines and effectiveness, progress or lack thereof etc...So it's really hard to say what to expect. I also heard a guy in the waiting room mention to another guy that his stuff didn't really budge for 6 months, then something kicked in and all of a sudden his adopted cells just went to town on all the enemies. :) ...Made me hopeful.

We'll see what next month has to say.

Until next time, I hope you all are doing well, and as always thanks for the positive thoughts, wishes, prayers, comments, and happy dances.



Login or register to post replies.

Kimmer's picture
Replies 6
Last reply 4/23/2011 - 8:02pm

Hi Everyone,

I am truly most humbled as this day marks the 5th year since my last surgery for recurrent melanoma.  It is also my birthday, so every year that passes is a true blessing.

I have had a little virtual party, of sotrts, going on at OTBB today and would invite anyone who cares to venture over there to do so and do a little reading.  My profile is under Kimmer or can be viewed by clicking on my name.  I only direct anyone there in the interest of offering hope.

Hope can overshadow any of our fears if we just surrender to it.

Love and the very best thoughts to all!


And remember, no matter where you go, there you are. Confucius

Login or register to post replies.

amybusby's picture
Replies 28
Last reply 4/23/2011 - 7:10pm

So far so good with the Temodar.  I've been on it for 2 or 3 days and so far no side effects.  I take it right before bed on an empty stomach (zofran as pre-med about half hour before!).

I've already done the simulation and stuff, so I am ready to start WBR on Mon. I'll do a 10 day course and then an MRI.

I've been around for a long time - fighting this for seven years.  I've seen so many of my friends and up in this position.  I'm not blind to the reality of what this means.  But I am also in pretty good spirits, knowing things could always be worse.  And knowing how many prayers, positive thoughts, and love are being sent out on my behalf - hard to feel sorry for yourself about anything when that's the case!

I'm so terribly worried about my friends Jerry and Knute.

Thanks for all the financial aid info on the Temador.  Luckily my insurance will be paying part of it, so it won't be as bad as I thought to get it.  See - lots to be thankful for!

I hate the idea that I may suffer some confusion & cognitive problems.  That's why I've always worried about having to do WBR/  As you all know I'm extremely proud of my razor sharp wit & intellect! *wink*  So here's hoping that's not too bad and my pretty little bald head doesn't get too burned!



Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 4/23/2011 - 6:01pm
Replies by: boot2aboot, Anonymous

anyone ever get multiple white spots( tiny and raised). I have them on my legs more recently. don't know if it has anything to do with my mel which was on my face.could be aging process (i am 66). . or reaction to vitamins. going to see dermatologist next week

Login or register to post replies.

ValinMtl's picture
Replies 6
Last reply 4/22/2011 - 11:23pm
Replies by: Jim in Denver, ValinMtl, dian in spokane, Anonymous

Hi Jim

I haven't seen you on the bulletin board for a while and wondering how you are doing with the ipilimumab/temodar trial.  I have always appreciated your support and wise counsel.  Just to let you know, I'm thinking of you.  Val xx (2nd round of ipi/yervoy)

Live Laugh Love Nothing is worth more than this day!

Login or register to post replies.

sharmon's picture
Replies 3
Last reply 4/22/2011 - 10:38pm

Hi, we are sitting in Houston waiting on a trial to start on Tuesday,  MEK and Alimpta,  Brent has been on MEK alone for over 15 months and the last scan showed some growth.  He is Braf negative!  When is it discussed everyone they just scratche there head.  No one understands why or how.

Back In May of 2009 he went stage IV and started IPI with carbo/taxol and went 9 months stable before he showed progression.  In Jan of 2010 he did one round of Bio chemo and spent a week in ICUl.  Scans did not show any improvement and it was stopped due to side effects.  The next month( February 2010) we found MEk for solid tumors (no Braf necessary). He did MEK for 14 months, stable until March 2011.

He has a chance to do a ABT-888 parp inhibitor in OHIO in May.  His tissue says he is qualified for this trial.  If we do this trial on this Tuesday he might miss his chance in OHIO.

We have been in contact with NIH and he is HlA-2 negative and is a possible qualifier for the TIL trial in Bethesda MA.

Here is a thought for JIM B  as well as the others here is consider.  Was all this stability due to IPI followed by Bio. and shoud we reintroduce IPI?  This theroy would support late response and a needed reintroduction.  He is Braf negative and there is no real reason he should be responding to Mek.  We talked to Dr Weber about IPI (yervoy) introduction and he said NO with out any explanation.

So do MEk wcith chemo on Tuesday....... wait and do ABT-888 with chemo in OHIO in May ,   or push for reintroduction of IPI......or a Til trial ( not good, since he could not take the Bio Chemo on Jan of 2010)

So you see our concern.  Brent is in great shape for a 63 year old with lung mets.  Able to work and travel.  If you didn't know about the melanoma, the rash on his face from Mek looks like a teenager.

Any feedback from the people here would be helpful.

Brent and Sharon






Login or register to post replies.

awg's picture
Replies 5
Last reply 4/22/2011 - 8:09pm
Replies by: awg, Anonymous, King

Diaganosed in April 2011.

Had surgical excison of site w/clean margins. Sne. Node mapping reveiled 1 or 4  pelvic nodes removed to be positive (superficial node, deep was neg). The plan is a suprficial node dissection (open extraction) on positive side w/ high dose Interferon infusion for 30 days and 3 day per week injection to follow.

My questions is has any had node dissection with robitic assistance vs open method, if so at what facility?


In my research the Robotic surgery looks like a much less invasive approach. I am not worried abot scars, but I am looking for a lower infection rate and faster recovery so I may begin Interferon sooner.


Thank you All and my prayers are with each and everyone!




Login or register to post replies.

adgesoph's picture
Replies 1
Last reply 4/22/2011 - 5:44pm
Replies by: Anonymous

My dad is being discharged from Vandy because they say there are no more trials for him there anymore.  Needless to say I'm pissed but he's going to try ipi at UVA, closer to where he lives.  He's getting gamma knife at Nashville for his 3 brain mets and then will return home.  He also has 2 lung mets, 2 tumors on the back of his neck (very painful) and a tumor in his pelvis.   However I guess they feel his disease is pretty aggressive, after not responding the the braf brain met trial.  I just hope ipi can start working in time.  Not sure if he has 12 weeks, according to these doctors.  Anyone had a faster response?



Login or register to post replies.

Dynasysman's picture
Replies 5
Last reply 4/22/2011 - 2:40pm
Replies by: EmilyandMike, Dynasysman, Anonymous, Carol Taylor

I am 5 months NED after finding melanoma in a lymph node in my left posterior neck. We never found a primary, and I had a left posterior neck lymphadenectomy (36 nodes out) last December. So far so good.
Last September, my noise started running. This problem has gotten worse over time, to the point where I have a pretty much permanent post-nasal drip, hacking cough, and can't get more than 4-5 hours sleep at once (not a good way to fight cancer!). My ONC is fairly sure thue problem isn't allergies, but cannot offer much help on what it is.
I know that my issue is pretty small compared to what many of you deal with, but I worry about how to keep fighting melanoma when I'm always tired and dragging. Plus, my wife cannot get any when we're in the same bed, which stinks for both of us.
Anyone else have an experience like this? Suggestions?

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

Login or register to post replies.

awg's picture
Replies 16
Last reply 4/22/2011 - 12:12pm

I am interested in hearing from other folks who have taken the 12 months of Interferon.

5 days a week (infusion) for first month

3 weekly injections from remaining 11 months

Did you have a port placed for the infusion portion of the interferon?

Seems excessive for 30 days of use. ( I hope!!)

I have no problem with needles and at this point have really good veins that make for easy sticks, I may be under estimating the effects of the interferon on my ability to stay well hydrated thus leading to issues with IV sticks.


Thank you,


Login or register to post replies.

EricNJill's picture
Replies 14
Last reply 4/21/2011 - 10:17pm

Eric's Oncologist told him he doesn't have 30 days to wait for the washout period to get into another clinical trial because his cancer is spreading fast.  He said that Eric needs to start Yervoy immediately, but Eric's insurance does not cover the cost of the drug.  We were told we could appeal but Eric's Oncologist said they aren't having any luck with getting the insurance companies to cover Yervoy.  He has had other patients running into this problem.  Has anyone here had any luck with assitance?

JillNEric in OH

Login or register to post replies.

adgesoph's picture
Replies 6
Last reply 4/21/2011 - 4:11pm

My dad is being discharged from Vandy because they say there are no more trials for him there anymore.  Needless to say I'm pissed but he's going to try ipi at UVA, closer to where he lives.  He's getting gamma knife at Nashville for his 3 brain mets and then will return home.  He also has 2 lung mets, 2 tumors on the back of his neck (very painful) and a tumor in his pelvis.   However I guess they feel his disease is pretty aggressive, after not responding the the braf brain met trial.  I just hope ipi can start working in time.  Not sure if he has 12 weeks, according to these doctors.  Anyone had a faster response?



Login or register to post replies.

TEAMM4M is a marathon training program for runners committed to raising money for the MRF.

Want to run a full or half marathon?
Want to join the TEAM?
Know a runner who might be interested?
Learn more here or contact me at

Carolyn Edrington
National Director, Miles for Melanoma
Melanoma Research Foundation

Login or register to post replies.