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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Shelby - MRF's picture
Replies 13
Last reply 9/6/2011 - 12:32am

This message is in response to several questions, comments and concerns we have received over the last few days.  There are varying opinions regarding the ability to post messages and comments using the Anonymous feature.  After weighing the pros and cons again, this feature will remain in place.  This feature gives old and new MPIP users the ability to ask questions they otherwise may be uncomfortable asking.  Whether it is because of embarrassment, the desire to receive unbiased responses, or even the need (or want) to remain anonymous from children or other family members, it is important that this feature continue to be available. 

The Anonymous feature is not intended to be used as a shield from others users when making rude or hurtful comments.  The MRF has bulletin board policies and a code of conduct that all users agree to when registering on our site.  The MRF also has the ability to see who posts what, even when something is posted anonymously.  When the policies are broken, those individuals are contacted by us and appropriate action is taken.  We do our best to monitor the bulletin board and remove inappropriate material and comments and the MPIP users have helped us with this task. 

To assist us further, we have created a new email address that can now be used if you have direct issues regarding specific bulletin board posts or comments.  You can still use the Contact Us form on the website, or you may send us an email at

Please keep in mind that this board is full of strong opinions and different personalities.  This increases the chances that someone will say something that you disagree with or that you are offended by.   It is also important that you refrain from guessing who Anonymous posters are.  Because of the high number of users, there is a good chance that the wrong person could be blamed.  Thank you for your patience as we work to resolve this issue and, as always, we appreciate your comments and feedback.


The MRF 

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Jan in OC's picture
Replies 4
Last reply 8/15/2011 - 7:58pm
Replies by: nickmac56, washoegal, KatyWI, Anonymous

Well, we got good news and bad news from all of Dirk's scans last week at MD Anderson.  Good news: CT shows a tiny bit of shrinkage in some lung mets, tiny growth in liver...altogether...they are calling it stable.  Bad News: 4 new mets in the brain. One is large 9x10mm, 3 small 

Papa wants Dirk to have surgery to remove the large one and he can harvest it for possible T-cells in a clinical trial.  T-cell growth is a 60% possibility in previously untreated patients.  It will take 30 to 45 days to grow cells.  Dirk also has surface spots to harvest from on his body.  We were told that those t-cells don't work as well on the brain mets.  However, because Dirk already participated in BRAF, IPI and E-7080, doctor doesn't know how that will affect possible T-cell growth overall.  

After our discussion with the neurosurgeon today, we are uncertain what to do. We do not necessarily have to have surgery for his brain mets, unless we want T-cells harvested.  Is the possibility worth the risk?  Any advice on Surgery vs WBR vs Gamma would be appreciated.

Our choices for brain mets are: 

1. Surgically remove the large tumor in the brain for T-cell trial (along with one from his side) and   (a) use Gamma Knife on other 3 or    (b) watch the other 3 while waiting for T-cells to grow.  In a few weeks after recovery,  use Bio-Chemo or Temodar until or if t-cells are ready.

2. WBR ......  only harvest T-cells from his body mets.....Use Bio-Chemo or Temodar until or if T-cells are ready.

3. Gamma Knife on all 4 tumors....only harvest T-cells from his body mets.....Use Bio-Chemo or Temodar until or if T-cells are ready.

Any input would be appreciated.


laughter is the best medicine

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Eileen L's picture
Replies 9
Last reply 8/16/2011 - 3:57am

So a few weeks ago I posted joyously that I had stable scans again, almost four years post-Stage IV diagnosis. This weekend I noticed that I have a swelling in my right groin which I know may prove to have nothing to do with melanoma, but then again it may. First action this morning was to get on the phone with my doctor's office, I have an appointment tomorrow at 3PM. I know this is a very rapid response to my concern, but I really, really, really wanted to have him check it out today!

So because I have to research everything before I walk into my oncologist's office (that is just who I am), I am wondering what would be a reasonable course of action for him to take, given a stable CT scan two weeks ago.My onc is a generalist at Kaiser SF and he is an excellent oncologist, but not a melanoma specialist. Whenever I have a specific concern/question I pay out of pocket to see Dr. Daud at UCSF's melanoma clinic, and I am trying to get an appointment with him for later this week.

Any thoughts? Would a PET scan be next? Perhaps an ultrasound of the the right groin to see if there is actually a swollen node there? If there is, a biopsy? I may have to push my Kaiser doc to be aggressive with this one, although with the FDA approval of ipi (I will never remember the name they are now marketing the drug under) I may have better luck at getting him to order what I think needs to be done since he now has a treatment option for me!

Thanks to everyone for your good wishes after my scan results. Hopefully I can post again in a few weeks that this swollen groin think was a false alarm, but if not I am ready to fight the fight and beat melanoma down once again!!!!

Eileen L

Stage IV





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triciad's picture
Replies 7
Last reply 8/15/2011 - 3:43pm

Hi Everyone,

I'm just catching up on the posts from the weekend, and I must say, I'm aghast!  I come here for support and advice, and thankfully, this extended family has never let me down...especially the kind, respectful MichaelFL who was attacked by name in one of the posts.  It's troubling.

I certainly respect everyone's freedom of makes this country great.  I realize people have strong opinions and are entitled to them, but the main goal here is to support and educate one another.  When posts are reduced to the negative back and forth banter out of anger, it detracts from the purpose we come help one another.

My advice is to ignore the nasty anonymous postings in order to maintain the integrity of the board.  To get involved in the back and forth arguments, only gives "Anon" a venue to spew venom.  To simply ignore removes his/her ability to continue the attacks.  Let "Anonymous" state his/her opinion (freedom of speech)...then it ends.  As hard as it will be, and I know that many, including me, will want to jump through the screen at some postings, just let it go. 

If "Anonymous" attacks a member as he/she did with Jill, simply post the positive...Jill, I support your decision and value your input on the board.  You are an incredibly generous individual to share so much of this painful journey with us in order to help us with our battles.  We love you!

Then, should Anonymous attack, ignore.  I know it will be hard, but you can lash out in your heart and in your head, just don't use the keyboard.

Just my two cents.

If you agree with me...don't reply.  If you disagree...use your freedom of speech!


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Lisa13's picture
Replies 21
Last reply 5/7/2013 - 2:57pm

I've been searching through past and present posts and aside from about 4 people, it seems alot of people who've had success with ipi are people with sub q's.  Now, forgive me for perhaps not knowing, but are sub q's classified as being Stage 4?  When I think of Stage 4, I think of organ involvement or distant lymph nodes.  That being said, with sub q's, you can sometimes see the ipi working because it's on your skin, but if it's in your organs, you're not aware of anything going on.  Are there many people who've done ipi which has worked on their mets internally? 

I started ipi last Wednesday and as of this morning, I've had cramping and 2 semi loose stools (sorry for the graphic visulization). I doubt very much it's ipi, but I'll probably keep track of my GI problems today and report anything funky to my Dr.


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

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deardad's picture
Replies 7
Last reply 8/15/2011 - 1:07pm

Hello Im new at this......Ive been following posts on this forum and have found it to be a wealth of information and support.  My dad was diagnosed last Dec stage 3 and now has 4 x liver and 1 x spleen mets. He has just recovered from a craniotomy to remove a single met and is recovering really well. The oncologist wants us to start B RAF in 3 weeks. We feel really fortunate that he tested positive for BRAF but what back up plan should we have? Any suggestions? He is in good health otherwise and has not symptoms at the moment. Thanks.

Nahmi from Melbourne

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Melanoma Mom's picture
Replies 19
Last reply 8/15/2011 - 12:08pm
Replies by: Anonymous, mombase, Charlie S, Janner, akls, eaca

I don't believe writers should have the choice of posting anonymously, as many times it is only to write rude and controversial comments. Please join me in writing to the MRF to ask them to require everyone to use a profile to post. 

I wrote them at the following link:

I will not be responding to any posts on this link. Yes, that's to you, Mr. Anonymous. 

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boot2aboot's picture
Replies 11
Last reply 8/15/2011 - 12:48pm

I wanted to let everyone know that i will receive my scan results tommorow...i have scanxiety and fear the worst...the day after that i fly to Moffitt and meet with Dr Weber about participating inthe Braf/Mek trial there...i also contacted Dr LaRusso at Karmanos in D town because they also have braf trials and will be going to them the following i will be busy looking fro treatments to stop this runaway train....

as far as CVD...i made it through the second round and was desperately sick for 4 days after...then, miracle of miracles, feel a lot like my old self now that i am de toxifying....


don't back up, don't back down

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Donna M.'s picture
Replies 28
Last reply 1/12/2012 - 8:05pm

I'm starting interferon treatment on the 22nd.  Any words from the wise to the rookie?  I'm growing more anxious by the day.  Thanks so much.

Peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart. (Unknown)

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Gene_S's picture
Replies 4
Last reply 8/15/2011 - 1:06pm

This Friday Gene will get his 24 week scans to see if he has kicked mel in the A$$.  Lots of prayers are needed.  We are hoping for NED with these scans.

Judy wife of Gene_S stage IV

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

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EricNJill's picture
Replies 18
Last reply 8/15/2011 - 4:44pm

I created this tribute for Eric's Celebration of Life Service.  So many of you have followed our journey so I thought this would give you some insight on the man he was.


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MikeWI's picture
Replies 5
Last reply 8/15/2011 - 5:27pm
Replies by: michelleg, AlanM, PlantLady

This clinic is run by Keith Block who wrote "Life Over Cancer".

Has anyone heard about this clinic?  I read the book but most info seems to be more for other forms of cancer.  It talks a lot about Body and mind thearpy along with a strict diet during Chemo/immune therapy and after.

I am trying to get my HMO to pay for a visit to them, and wonder if it would be worth it. They are in Northern Illinois.

I bought several of the books recomended in my earlier post.  Thanks for the suggestions

I have been sad about the people who have recently died of our disease, and I pray for all of us.


Stage 2c(yes this still scares the crap out of me)

Search and Destroy

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KatyWI's picture
Replies 7
Last reply 8/15/2011 - 1:11pm

Hi.  I am a stage IV warrior.  Maybe you've seen me around; I am sometimes quiet on the board but I'm here almost daily.  I'm also a triathlete.  I became a runner, and later a triathlete, after I finished Interferon eight years ago. I became stage IV in 2009.  In the words of Monty Python, "I'm not dead yet."  Far from it.  In four weeks, I will complete the "big daddy" -- the Ironman triathlon.  This is a one-day event consisting of 2.4 miles of swimming, 112 miles of biking, and 26.2 miles of running.  I am dedicating my race to all of us and raising money for the MRF through the Miles for Melanoma program.  I am not asking you guys to donate - we have all "given at the office," so to speak.  But if you find my story intriguing, if you find it inspiring, or if you just want to kick the *^%$ out of mela-sucka-noma, please consider sharing my fundrasing page with others.  Post it on your Facebook.  Pester your neighbors.  Whatever.  Because I'm really motivated by that last bit - kicking the *^%$ out of mela-sucka-noma.

This link also tells more of my story - it is much more eloquent than my profile, albeit less technical.


Every one of us reading this post is surviving a melanoma diagnosis, either our own or that of someone we love and cherish deeply.  (And especially those who are surviving the heartbreak of losing that person--my heart goes out to you) 


Just keep going!

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grungle's picture
Replies 7
Last reply 8/16/2011 - 9:17am
Replies by: MichaelFL, jag, Cooper, FormerCaregiver, Anonymous

Hi all

My wife has scondary melanoma of her liver, primary originally ciliary body melanoma.  Laparoscopy in March showed it was melanoma, although she has also had breast cancer in the past. She is braf negative.She has multiple tumors in her liver, but  none elswwhere at the moment. Because it has been slow moving our onclogist has advised us to play waiting game befoe he put her on Dacarbazine.  He is very vague about the use of yervoy in Queensland. During her yearly check up with her opthamologist, he advised us to try and get her on yervoy asap, which means she has to have failed another chemo first, hence the reason we are going on Dce.

Our oncologist maintains no one in Queensland is administering yervoy .  I know peter mac is using it, i have contacted them a couple of times. Does anyone have any information on how,where we could get it in Queensland?  Also any idea if/when it goes on the PBS list what the a ball park cost figure might be. thanks.

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Anonymous's picture
Replies 0

Happy birthday from your secret admirer! Good luck with Yervoy!

P.S. I know your age!

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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