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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davidfromsingapore's picture
Replies 5
Last reply 11/22/2011 - 9:49am


I was on this board 3 years ago when i was stage 3B.  Unfortunaltely a few weeks ago I was having headaches and a scan revealed 3 brain mets.  I had 2 removed via resection and the third via radiation (SRS).  My life is a bit complicated.  I am an American citizen with a wife and 3 children but we live in Singapore.  I have an oncologist at Mayo in Rochester, Minnesota and one here.  My Mayo doc is recommending that I start with Zelboraf soon.  So here are my questions:  

1) Is Zelboraf considered adjuvant therapy - meaning that it is given to patients who had melanoma removed but for the time being are NED?  Or is it only effective when a patient has active lesions?

2) Is it possible to get a complete or durable response from Zelboraf?

3) Are there any of you out there who are taking Zelboraf who like me have brain mets or had them and you are taking Zelboraf to keep the diease at bay? Is it working?

4) Are there any of you out there who are taking Zelboraf and have had long term responses?


Thanks in advance for your replies.  I am looking forward to getting to know some of your again now that I am back on the board.  



“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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TracyLee's picture
Replies 5
Last reply 11/23/2011 - 1:45am

Hi y'all,

Still hanging in, trying to make it to 12/1 without another lung drain. Has anyone done Zelboraf in combo with Temodar?

Side effects, even just on Temodar? Tips? I'm sorry, I know there are posts for Temodar, but I'm too tired to try and find them. I'm still working full time, not sleeping well at all.

BUT, I'm here, and I have so much to be thankful for. Those long, sleepless nights, I pray and list all the small and large joys of each day.

Praying for us all!



Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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jmmm's picture
Replies 8
Last reply 11/27/2011 - 7:38pm
Replies by: Anonymous, jag, momof2kids, kylez, KatyWI, davidfromsingapore

My husband is scheduled for a craniotomy next Wednesday to remove a large (5cm x 5cm) tumor. We are both scared and worried about complications. It's in the motor area and the doctor said there was a chance of left side paralysis, plus a bunch of other complications. Any advice on what to expect, how to handle the anxiety and fears, recovery, etc. We have 3 young boys at home and I'm worried about juggling it all. He's been through a small bowel resection and a thoracotomy and breezed through both surgeries with no complications. This surgery sounds so scary. Any advice?

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deardad's picture
Replies 8
Last reply 5/28/2012 - 10:04pm

Hi I think Im starting to sound like a broken record, but I just want to hear how everyone's going on Zelboraf? I know Dick is a special long responder but are there any others out there? If you are on this drug what are you're plans when it stops working?



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alicia's picture
Replies 6
Last reply 12/1/2011 - 7:51pm
Replies by: alicia, Anonymous, FormerCaregiver, Lisa13, deardad

Hello friends,

A very close friend of mine was diagnosed 2 yrs ago with stage 3a melanoma.  just 6 months ago it spread to his right lung with a single metastasis.  He had the rt upper lobe removed and did no treatment after.  He just had CT chest abd/pelvis 7 weeks ago with NED.  Just a week ago he began having back pain and dark colored urine.  Did MRI of abdomen and found out today he has widespread metastatic disease to the liver and spleen.  What treatment options are there for this type of disease and are any of you having good results with your treatments for liver/spleen mets.  thanks so much!!!!  you all have been such a great support to me through my battle as well.  much love to you all!!!!


Alicia stage 3 w/ mult primary tumors and lymph node involvement ( 1 yr of interferon currently NED)

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cwu's picture
Replies 12
Last reply 6/14/2012 - 1:56pm

Hi all,

I have read and heard that Yervoy has a delayed effect and sometimes doesn't work until months after the last infusion. Since there are many out there who are on or have used Yeroy, I thought I ask the question. At what point did your doctor conclude that it didnt work for you and what was the basis? At your first scans (around 3-4 weeks) after the last infusion?

My father had his last dose today and his doctor is not all that optimistic as his tumors have gotten worse. However, he still hasnt offerred us any other options except decarbazine which is not very effective. I am just so frustrated.

Any thoughts,advice, suggestions are welcome and appreciated.


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marfda's picture
Replies 4
Last reply 11/22/2011 - 10:48am

I have looked at the board a million times since my diagnosis in 2009. I think joining and participating seemed too real. I am currently undergoing local radiation for the 3 local recurrences I've had on my back near my primary site. I am stage 3b or c. I have some active tumors on my back in the area being treated with radiation, but today found a sore lump in my groin under my initially clear SNB site. Commenced freaking out and fleeing here. :) I'm feeling more calm this afternoon. It is obviously in the site along that original lymph channel which is probably a good sign? I see the radiation oncologist tomorrow after my treatment, so we'll see what is said then.

Fun about me. I live in Tucson and am being treated at the AZ cancer center. I have a 5 year old daughter in kindergarten, and a 7 year old son in first grade. I have a wonderful husband. I am a full time cancer battler and sometimes clean the house as a hobby. ;) Looking forward to and a little scared to get to know everyone here. But, it's time for me to invest in some support from others who understand the battle.  

I made it through the year of interferon and the first stage of the DERMA trial. I've been booted from the trial at this point to undergo radiation.

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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KatyWI's picture
Replies 3
Last reply 11/21/2011 - 11:28pm
Replies by: Phil S, jag, Charlie S

I just got off the phone with the NIH recruitment center.  I'd identified a trial I thought would be a good approach for me.  Some of the NIH trials stipulate that patients with 3 or fewer brain mets are allowed.  Some say nothing at all about brain qualifications.  Apparently, the lack of mention doesn't mean there are no restrictions -  the nurse was insistent that all their trials required three or fewer brain mets.  I am devastated - but I also don't fully believe her.  Does anybody know 100% if this is true? 


Just keep going!

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Jydnew's picture
Replies 1
Last reply 11/21/2011 - 9:14am
Replies by: Janner

This question sounds really stupid to me as I formulate it in my head, but I'm compelled by my fear to ask... I noticed a 1-2 mm slightly raised black spot on my husband's arm last Thursday night.  He had just been to the dermatologist on November 8 for his semiannual checkup, and nothing was there at the time.  At first, we thought it might be a tick, so he went in the bathroom and sort of flicked it with tweezers and the middle lightened, leaving a reallhy ugly black spot with a pinkish middle.  He said he'd wait a week then call the derm if it still looked weird.

Last night, I was stupid enough to google "pictures of melanoma" and scared myself into the possibility that it's nodular melanoma.  Then later, I wanted to see it more closely, and I scratched it off, like it was a scab, and with just a little work, the whole black part came off.  Looks like a normal pink spot underneath - like a bite or pimple (not raised, though).  But now I'm reading that it IS possible to scratch off a melanoma, and it can heal normally underneath, concealing the melanoma that will continue to grow deeper into the skin.  He says he's not going to the dermatologist if it heals up normally - he'll go if the black comes back. 

Is it likely that this is just a scab?  Can you really pick off a melanoma with your fingernail and it might grow back normally?  Can a melanoma show up like that in under 10 days?

Now I'm worried....


(btw - he is nearly 10 years NED from a stage iiia dx; without that history, I doubt I'd think the spot was anything more than a bite or pimple with a weird scab)

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Anonymous's picture
Replies 2
Last reply 11/21/2011 - 9:19pm

I am new to the group and I was just diagnosed with Stage 1 (.35) melanoma. I have been trying to do some reseach so I can better understand my diagnosis. I am going to do a profile once I find my dang path report from the move.  My dermatologist kept reiterating to me, "Stage I is a good place to be, you have a 95 % survival rate." Well, when I did my own research, he was right, the five year survival rate is 95%, but then the 10 year survival rate drops to 88%! I think that is scary. So what do I do? Just wait around for it to come back? Do I need to see an oncologist?

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Terra's picture
Replies 4
Last reply 11/21/2011 - 8:21am


We had mid Oct scans that showed ipi was working - approx 50% decrease in liver disease - yet he is now feeling some consistent pressure on his lower left side again and the most recent scan did not involve his head where he had a tumour behind his eye (on earlier scan) - he is now thinking his eye looks slightly swollen and feel slightly oily.


Thanks for any possible answers - we more have scan in a month 

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H555's picture
Replies 7
Last reply 8/7/2013 - 7:28am

i'm just about to begin week 3 of high dose Inteferon IV and am totally whipped. it's all I can do to get up after sleeping 12 hours. i've started taking a nap within 2 hours of getting up. I've got no appetitie but am drinking protein shakes and peanut butter and toast. The meds are managing the side effects ok. i had a very high fever and severe chills after the first treatment but only slight chillls the following monday. my biggest challenge is appetite and fatigue. does anyone have any tips for getting thru the next two weeks? thankyou.

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Gene_S's picture
Replies 7
Last reply 11/23/2011 - 8:37pm
Replies by: bcl, EmilyandMike, AlisonC, mombase, deardad, Anonymous

The Surprising Cause of Melanoma (And No, it's Not Too Much Sun)The Surprising Cause of Melanoma (And No, it's Not Too Much Sun)
Research is uncovering fascinating theories behind the recent epidemic of the deadliest form of skin cancer, melanoma. What's more, the rise is only being seen in indoor workers. Especially if you work indoors, find out how to protect yourself and even cut your overall cancer risk by as much as 60%.


I'm a firm believer that the LACK of sunlight is one or possibly the sole cause of my melanoma.

I have previously posted info about Vitamin D and testing for proper levels. If interested do a

search using my user name.


Best Wishes,

Gene  (Stage IV, currently doing a clinical trial using Yervoy with gm-csf)

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

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Lisa13's picture
Replies 5
Last reply 11/21/2011 - 7:51am
Replies by: lhaley, LynnLuc, Lisa13

Hi Linda,

Since we have pretty much the same size brain, I thought I would ask you a couple of questions:

What did your Dr. say about the 2+cm tumour?  Is there a high chance of it shrinking and even possibly disappearing.?  If so, what are the "odds" of that happening?

What were his options of treatment in terms of blood/brain. I remember you mentioning 3 things.


I really wish you the best of luck Linda, I truly do.  Having had gamma knife last week, I'm hoping over the next few weeks, I don't have symptoms, which to me would sound like bad news because I'd be scared of it growing. It's so hard to know if the ipi I've been on has created the tumour to get bigger because of inflammation. I often wonder because I've had no symptoms from a 2.5 cm tumour, that it's because ipi is doing something.  Nobody has any answers even though one of them has questioned the same thing. Radiologists sometimes don't know much about these drugs and melanoma in general, so I'm looking forward to seeing my melanoma oncologist at the end of the month.


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

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JerryfromFauq's picture
Replies 4
Last reply 11/21/2011 - 12:44am

 i am NicOz's mum. we would just like to thank you all for your lovely thoughts re Nicole's passing. Sorry am not very computer literate could only get in to chat room using Nicole's name password ,to let you all know we are sincerely grateful,very special to us as well we all miss her so much  very special to us as well we all miss her so much         ..                                                                             

-hi wanted to let you know Georgia doing ok.

We all miss Nic so much. 

Thank you all so very much ,chatting with you all kept her strong.  Keep up the good fight , dare i say God bless you all,  

yes i know i would have traded places with Nic from the start as well.  l will keep in touch from time to time, try to see if can get new user name.   My son will help.


        Pam says Georgia is healthy and getting along well.  WE all know she has to really miss her Mother that she was so special to.

I'm me, not a statistic. Praying to not be one for years yet.

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