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
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

Login or register to post replies.

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)

Login or register to post replies.

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.

Login or register to post replies.

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.


Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

Hi all,

I probably posted on this bulletin about 2 months ago about my Mum.

Since then she has a full course of radiation on both the large tumour on the L4 of the spine as well as the spot at the top of the leg.

On Thursday (today is Saturday in Australia) she received her ct-scans. It has been about 6 weeks since the radiation and Mum decided to have her ct-scans early as she started getting a bit of pain back.

The scans were not good. Although they didn't reveal any extra spots, it appears the large tumour and the spot on the top of the leg have not been affected by the radiation at all. There may be an indication also that the tumour has grown slightly.

We're (being Mum, Dad and me) are going to the oncologist on Tuesday. Mum is feeling very negative at the moment which is absolutely heartbreaking for our family.

BRAF results came back negative....oncologist also has c-kit results but hasn't told us yet which is making us think that it's negative, so Gleevac is probably a no go.

So basically it's a non-skin related melanoma, no primary (unknown primary) with no c-kit or braf mutation.

Where to from here? Surgery is still not an option. Dad and I have desperately tried researching options and contacting researchers from the US, China (including Dana Faber etc.), and no-one has replied.

Feeling very desperate now. Does anyone have any suggestions? Your help would be incredibly appreciated.

Cheers from Australia,


Login or register to post replies.

lhaley's picture
Replies 5
Last reply 8/15/2011 - 1:46pm
Replies by: djpayn, jag, ValinMtl, King, triciad

I finished radiation today on my arm, it was aimed at the ulnar nerve to clean up where they could not get a margin from lymph node removal.  I was told that I would only have a little fatigue and would only be slightly pink.  Well, that didn't quite happen.  I'm exhausted and quite burnt.  The radiologist commented that I must have sensitive skin.  Yeah, I'm a redhead and pale!!!  Melanoma.... hmmmm   After day 4 when I was already blistering and after talking to Debbie from Va I questioned and they stopped the bolus.

Anyway, my question is those that have had the severe fatigue, how long does it last?  I assume that I would start bit by bit getting better quickly.  The tech commented that it could take quite some time since the radiation continues working for 90 days.   

Also, she took me off of my vitamin E and D before treatment. I did forget when I saw her yesterday to ask when I could get back on..  When I asked the tech today that's when she told me that the rad. continues working for 90 days so she wasn't sure. I was advised to call on Monday to ask (appointment was late this afternoon).  Any thoughts?  From what I read online those vitamins are not advised during radiation because of something with the free radicals. 

I was treated locally since I couldn't go the distance to Charlotte everyday. I am used to questioning what is going on with my health plan but they have not liked all of my questions.  I guess they are used to patients that just trust their word. 

I've been so grumpy and emotional that I'm even bothering myself! Can't imagine what my poor hubby has been feeling.  I am excited though to be finished!!  Now just hope that it can help to save the nerve.


Login or register to post replies.

nickmac56's picture
Replies 4
Last reply 8/13/2011 - 7:34pm
Replies by: nickmac56, MaryBZ, BethA, lhaley

My wife had her treatment - it lasted only 49 minutes. We got there at 6am and didn't get out until noon. It certainly is more painful than Cyberknife. She got 4 injections of local anesthetic at the sites where the head support frame is attached. She is pretty stoic and has a high pain tolerance; she's had a ton of sub-q tumor surgeries under local. But she said this was the worst. The spot where the pins will go gets filled up with the anesthetic fluid - quite pronounced. Once it got working after 20 seconds she had no pain at all the rest of the time. They attach the frame with four pins and they tighten them all the way to the skull. They pulled out an allen wrench and the neurologist really reefed on it - I was surprised at how tight they got it. 

They gave her an Atavin - sedative - and that made her pretty sleepy throughout the entire procedure. After the head frame attachment it was a piece of cake - get the MRI - wait 90 minutes while they do the gamma radiation plan, then the treatment itself. She's been napping all day in recovery, but otherwise in pretty good shape.

Given the choice she would do the Cyberknife again in a hearbeat over Gammaknife. 

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

Login or register to post replies.

Lisa13's picture
Replies 3
Last reply 8/13/2011 - 2:46am

When I spoke to my Dr about my CT scan taken July 22nd, he said other than small lung mets, I had no other spead. After receiving copies of my CT, I'm reading the following:

"Interval development of an infracarinal lymh node, short axis is 1.2cm. Otherwise, no new mediastinal or hilar lymphadenopathy"

and then the impression is:

"Further growth of the previously seen lung mets as well as development of a mediastinal lymph node metastasis"

That to me is a lymph node now suggesting spread does it not?  I wonder why my Dr didn't mention this to me? Maybe it's all relative cause I have lung mets or maybe he's not concerned. Just seems strange especially when I asked him if it's spread anywhere else and he said "no".  It also seems strange how they are assuming lymph node metastasis when they havn't biopsied anything. Just saying...............



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

Login or register to post replies.

Bruce in NH's picture
Replies 7
Last reply 8/15/2011 - 1:10pm

Good Morning from New hampshire!

As a short background, I am in my 10th year battling melanoma and I continue to win this battle! There is no giving up in my heart! Setbacks are a part of life. It's how you deal with them that makes the difference.

In the process of gaining entry into the new t-cell targeted therapy clinical trials at NIH in Bethesda, MD, I learned I had multiple melanoma metastases in the brain - more than 10. I just completed a 10 session Whole Brain Radiation Treatment (WBRT) program at the Nashua (NH) Regional Cancer Center on Wednesday. I will have a followup brain MRI on either August 25th or 29th, depending on the facility I choose. I will know by August 31st whether I am a candidate for targeted radiation to zap any remaining metastases (SRS). I remain confident and hopeful that I can proceed with SRS, get the met count to 3 or less and get started at NIH as previously planned.

If you have any specific questions you would like to ask me regarding my experiance in dealing with WBRT in confidence, you are welcome to email me at Enjoy your day, take one day at a time and be thankful we have such great technology, medications and physicians to help us through this.



Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

Login or register to post replies.

TracyLee's picture
Replies 11
Last reply 8/13/2011 - 8:01am

Hi y'all,

I began BRAF this past Monday, after completing 4 rounds of ipi.

I am having an excellent BRAF response, already!

Neck nodes are down at least 1/3, if not 1/2.

Lumps/painful bumps on scalp - much smaller, flattening out.

Just wanted to post some happy news to encourage everyone out there.

Always keep trying, never give up.

God is SO good!

Woo hoo, posse up, we are kicking it to the curb!


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

Login or register to post replies.

It's kind of going from bad to worse for my wife. Today she goes in for Gammaknife treatment of the three new brain tumors. Should be a piece of cake and beats a craniotomy (which she has had before). But earlier in the week she felt a pain in her tailbone area, so we squeezed in a visit with our oncologist and he arranged a CT scan (which occurred yesterday) and bone scan (to take place Monda). He called last night to tell us that in fact the CT scan had found a tumor at the tailbone area (soft tissue) so indeed there was a source of her pain - but that it could be treated with radiation. He then went on to tell me that it appeared there was evidence of cancer in her spinal column. and that was not treatable. He wanted her to go ahead with the bone scan and gammaknife and we go in to see him and discuss it more thoroughly on Tuesday when he has both the bone scan and CT results and he can show us pictures and discuss what we can treat and what we can't.

Obviously untreatable involvement to the spinal column does not sound good in any way, shape or form. I can't find anything much of help online about what that means in terms of symptom progression  - other than pain adn eventual death. Anyone else have this or have a loved one who has had it in the spinal column? Are symptoms associated with location? or once it's in the column and it travels and grows it is just a matter of time before it shuts down vital functions. I also assume it means it's a highway to the brain and we can probably expect more there. I know her life expectancy just got very short, but knowing what to expect in terms of symptoms and progression would be very helpful as we assess treatment options.  Thanks, 


Her motto: "Don't wait for the storm to pass, love dancing in the rain".

Login or register to post replies.