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
mrsmarilyn's picture
Replies 1
Last reply 1/22/2013 - 11:29am
Replies by: POW

My brother received his results from his BRAF testing out of USF - and it states "braf K - "the wild type".  How can he be both K and the wild type.  I thought K was a mutated gene - and wild is not mutated.  Right now he is on yervoy - but needs to know his options - just in case yervoy fails.

Thanks very much-

MrsMarilyn

Sister of Gary'

(Stage IV for 11 years now!)

Login or register to post replies.

islandbreeze's picture
Replies 1
Last reply 1/22/2013 - 7:39am
Replies by: buffcody

I got back home a few days ago and going through the public hospital system is a long,tedious process, I can not go private as I ve no funds or I wouldve found out long ago what this melanoma doing in my body. March 21st I am scheduled for surgery and the morning of surgery is when the scan is done, based on whats seen there would determine the extent of surgery and if they see nothing,I am being advised on getting a PET scan in the USA, the Bahamas doesnt have this available. This scan what I will be getting is injection of blue dye unto my whole lymphatic system, as the lesion was on my loin[trunk] and the cells could be anywhere.

So you know how cancer head goes, Im thinking this process as gone on long enough, I know nothing more then I did after I received my pathology report,the cells could have spread. well I cant worry no more,Ive placed this in God's hands, I cant cope with all the what ifs,ands and buts anymore.I dont even know if I will go back to Nassau for the scan.It was hard enough to come up with a down payment for the scan alone,and if I were told I need chemo,thats another concern,where would the money come for that? I am poor, I am an invalid and need assistance,and now the assistance I was getting from social services ended in Dec 2012.

Maybe I'll lose enough weight to be able to work, as it is osteoarthritis as me limited to almost everything in my life.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

Login or register to post replies.

lilred75's picture
Replies 13
Last reply 1/22/2013 - 12:29am

Wow, it has been FOREVER since I was last here! I recognize some of the names, so maybe there are still a few who remember me ;). I like to visit here now and then, and check to see how people are doing. I like to give hope to those who are currently wondering where their life goes from a newly stage IV diagnosis, and let "old" members know I am still alive and kicking.

I am heading into my 7th year as a stage IV melanoma survivor...HOLY CRAP! How did THAT happen??? Even better, I have been NED since Fall 2007. Yep, nothing but PET and CT scans to monitor since October 2007. It still blows my mind to realize how many years it has been since hearing those horrible words in my oncologists office. I have been one of the lucky ones. Since becoming NED, I have had two beautiful daughters (ages 2 and 6 months now), and can not complain at how good life has treated me. I have watched several friends pass away, or get diagnosed with different cancers and other unexpected conditions, and it just makes me value the days I have had even more. I am scared to death about what the future holds, but every day I have had with my daughters, is a day I could never have imagined in my wildest dreams.

If all continues to go well, this year I will turn 38 and celebrate with a husband who I didn't meet until I was already diagnosed with stage III, and with two amazing toddlers who I never thought would be possible. I don't know why I am a lucky one, but I try to live each day for every single person who hasn't been so fortunate.

A lot of crap happens to really good people. But I am proof that miracles do happen, so never give up hope, until the very end. You never know how good life might get, nomatter how many days you have to live it.

Alison (Lilred75) 

Miracles can happen to those who believe in them.

Login or register to post replies.

Rocco's picture
Replies 4
Last reply 1/21/2013 - 11:59pm
Replies by: King, awillett1991, Rocco

Howdy,

It's been a while - thought I'd update folks.  I'm now on a 6 month scanning schedule.  I had scans (MRI/CT) this week, with follow-up appt with my Onc.  MRI = clean, no issues.  Still NED, but the CT showed inflammed/enlarged thyroid as a new issue.  My Onc took additional labs to check thyroid levels.  Results showed that they were way off, so off to the Endocriniologist.

I was blessed to get an appointment the very next morning with the Endo that I had worked with during my ipi side effect/ eye-related issues.  At that time my eyes were reacting as if I had Graves disease, but there were no major issues with my thyroid.  This time the Endo is almost certain I have Graves disease /hyperthyroidism.  Thankfully my eyes don't seem to be involved at this time - and I'm praying it stays that way.  I'm now on meds to try and right things. 

Over the past couple months I've actually had several of the symptoms of Graves/hyperthyroidism, but never looked at them as a whole, always writing each off to something else.  What can I say, I let my guard down since my scans had been clean for a few years now.

So, I'm back in patient mode for a bit, jotting down each little thing to report back to my Endo and Onc. So long as the meds work and my eyes don't get involved, the plan is to stay on the meds for 2 years, testing along the way until it goes into remission (Endo's word not mine).

So now cancer issues for now, just a crappy thyroid!

Hang in there everybody!

-Rocco, IV since 2005, Ipi responder.

Luke 1:37

Login or register to post replies.

Snickers60's picture
Replies 14
Last reply 1/21/2013 - 12:22pm

Yes !!!!'! Yeah !!! Amen !!! Glory be ! Yippee !!!!
Just saw Dr. B and everything was great for "my wonderful Wayne " :-)))

Noooo melanoma in MRI of Brain or PET Scan and all
Blood work looked great !!!
Whew !!!!!!! Alright !!!! Exhale !!!!!

All praise to God we give !!!

Warrior Wayne and Nancy - dancing a JIG !!!! -)))
Dance with us ????? :-)))

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 !

Login or register to post replies.

DeniseK's picture
Replies 17
Last reply 1/21/2013 - 5:46am

Hello everyone,
Wow, so I've been through a lot the last couple weeks. I was on a temporary insurance for low income which only lasted 2 months. My doctor tried to get me zelboraf but the state denied coverage so I was looking into clinical trials. I had an MRI of my brain on Monday and was told Tuesday I have a 12mm x12mm met in the right frontal area, I suspected this due to having some pretty bad headaches lately, so this now excludes me from the trial. My doctor wants me to get either gamma knife or external beam radiation followed ny WBR, but not sure what I'm gonna do, I meet with the radiologist next week to discuss options. I applied for social security disability last week and was approved in about 4 days, thankfully this gives me medi cal insurance and I can now get the zelboraf and radiation treatments. I'm on a steroid Dexamethasone 4mg to help reduce swelling in my brain, I'm also on a time release morphine sulfate 20mg capsule to help with pain in my head, chest, back, and leg. I should be starting z next week and radiation the following week. I wanted to ask if you have had brain mets and radiation, should I get wbr after the gamma knife? I noticed some people don't do wbr right away. I'm thinking if I only have the one brain met I should just zap that and wait and see what happens with the z.
Right now I'm so thankful I finally will have insurance to get the help I need. If your stage 4 its pretty fast at disability, I'll get my first check january 1st and the medi cal was immediate. Its not medicaid its state insurance for first 2 years. I know there's been some questions about the process so hopefully this helps someone.
Can't believe Christmas is 3 days away! Merry Christmas everyone!! :)
Courage, Strength, and Hope for us all!
Denise

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

Login or register to post replies.

awillett1991's picture
Replies 27
Last reply 1/20/2013 - 8:58pm

Scans came back showing nothing new, and nothing grew!! I continue to have thyroid lighting up incl some lymphatic tissue and swelling however TSH and Free T4 are back to normal, probably from steroids. It was biopsied 3 yrs ago, did a full endocrinology workup in Oct/Nov 12 and my doc remains unconcerned - says its Ipi induced. My 4mm brain met is now "tiny", the other went from 6 or 7 mm, depending on which report you read, to 5x3. Also there was no edema, and rad onc said I had it in my spinal cord due to "questionable leptomenengial enhancement over left frontal convexity". He discussed WBR, but we went SRS instead. Now this area is "less prominent". Scary.

The mass inside my heart had really taken off when I stopped Zel - from 7x11 mm on Sept 29 to 28x41x41mm with decreased heart function in 47 days off Zel. Now function is near normal with mass reduced to 19x30x34.

I have been back on Zel 63 days, actually taking the drug 48 of those days after a 48 day break to start Ipi. Unfortunately there is no way to ever tell if the Ipi worked according to my Dr because of me taking the Zel. Something is working though and for that we are very, very, grateful!!!

I created a Zel timeline w pie charts for my doc to see how much drug I'd taken, and the breaks I'd had. I've started an intermittent schedule of two weeks on/one week off to try to reduce side effects and get me off prednisone. And maybe it will prolong the response. I've been on pred since dec 14 when I was hospitalized for liver toxicity. ALP was 6x normal. Right now ALP is fine, but AST, ALT and Bili are all up and climbing so this is my one week off. Hopefully what held true in those poor little melanoma mice will work for us too. Squeak squeak.

Zel side effects still suck. Period. But I have a lot more energy, overall I feel great, and I'm alive!!!

I'm so thankful for everyone here, their positive stories and encouragement, and we are thanking God for this good news after a rough and scary few months. I have no regrets. Many prayers for continued good news for us all.

Amy

Login or register to post replies.

FitzChieco's picture
Replies 8
Last reply 1/20/2013 - 6:52pm

Hi,  This site appears to be just we are looking for.  My brother has recently been diagnosed IIc and we have to make the decision about watch and wait or try the peg interferon for 5 years.  My brother, Kevin, has some congitive issues from birth that affect his balance and his short-term memory.  He does fine when he is able to follow a routine but otherwise, he gets confused.  He came through the surgery well and nodes were clear, hence the IIc.  But his initial path report was pretty bad (Clark IV, 5.4 mil and ulcerated.)

My brothers and I have to help Kevin make this decision.  We have several questions.  We are concerned about the side affects completely interfering with his routine and therefore negatively impacting his quality of life.  Questions like:

1.  We have read about memory loss and a sense of confusion while on interferon.  Has anyone experienced this and how bad is it?  does is go away (does full memory return) when treatments are stopped.

2.  Fatigue.  Kevin is a runner.  He is 55 and in great health.  His greatest joy is to run several miles a day.  Is there any way that he would be able to continue with this type of activity?

3.  Results.  Kevin's doctors are indicating that there is some evidence that this treatment has been effective in 15 - 20% of IIc patients.  What do you folks think about the reality of peg interfuron making a difference in the long run.  Doctors have said that the surgery went well and there is a 50/50 chance that it could rear its' ugly head again or never be seen again.

 

I am sure that these questions have been asked and answered before, but this is all new to us and we really could use some insight from those who have had similar experiences.

Thanks so much for any information.

Deb

Login or register to post replies.

Jinx's picture
Replies 7
Last reply 1/20/2013 - 6:19pm
Replies by: POW, Gene_S, Josh, Jinx, washoegal

Hello

In 2006 I was diagnosed with ocular malanoma in my left eye. Soon there after I had plaque surgery at Jules Stein Eye Institute. I did lose most vision in that eye but was glad to be alive. One year ago in Dec, my yearly CT scan showed 5 small (1.2cm) spots on my abdomine. Six months later in June they showed no growth. This past Dec the CT scan intecated that at least one of the spots had grown (1.7cm) A biopsy was ordered and showed that it was melanoma. 

I have recetly gone to USC Norris Cancer Center and my Doctor there (Dr Wong) has recomended that I start  Yervoy infussion as treatment against the melanoma. I have read so many horrific side effects that I am now seeking others that may have gone through this tratment.

My question is simple...what are your feelings about this treatmeant, and what others might you recomend?

Not sure if my condition makes any difference, but here it is anyway.
I am a 59 year old male in good to great health (other than the melanoma) I am 5'9' and weigh 160. I am on a mostly glutten free diet, very little meat
I exercise 4 to 5 times a week....weight lifting and cycling. Never smoked. I havent even been sick in the last 15 years (the flu was the last illness) 

Login or register to post replies.

mama1960's picture
Replies 6
Last reply 1/20/2013 - 3:29am
Replies by: JerryfromFauq, Tina D, mama1960, lou2, Anonymous

I have never been that person who goes to the doctor for checkups, but with all the Melanoma mess I decided to do the right thing. I had a blood test to check all the usual suspects, cholesterol etc. They are way out of the ball park and I am going to work on that. However, he also tested a couple of things I never heard of. They have to with inflammation and the possibility of heart disease. They are hs-CRP and Fibrinogen. The results are off the charts. High for the first one 2.9 and mine was 32.2. For the second one high is 464 amd mine is 658. He says this show a really large amount of inflammation somewhere in my body. Said it could be a result of cancer or the surgery, but there is no way to know for sure. Anyone out there familiar with this?

It is what it is.

Login or register to post replies.

BrianP's picture
Replies 4
Last reply 1/20/2013 - 2:21am
Replies by: JerryfromFauq, Tina D, Anonymous, aldakota22

Hello fellow Melanoma warriors,

I have received so much information and inspiration over the last year.  I wanted to share with my fellow warriors a portion of a note I recently sent to my family and friends,

"Like a lot of cancers there is a significant chance of recurrence so I won’t know if I truly won my battle with cancer until I’m holding my grandkids about 30 years from now.  That’s the tough thing with being a cancer survivor; it’s always in the back of your mind.  If you really think about it though none of us really know how much time we have left on this earth, it’s just more prominent for cancer survivors.  The silver lining in all this for me is the realization that if I am fortunate enough to hold my beautiful grandkids many years from now I know I will have been a better husband, father and hopefully friend to many of you.  I will have counted more blessings, admired more sunsets, taken more walks on the beach, prayed more, loved more, and stressed less.  Not a day goes by now that I don’t thank God for all the blessings in my life and I have to admit I didn’t do this before my cancer.  I hope all of you had a wonderful Christmas and I pray for you and your family for a HEALTHY New Year."

It's been a tough run for me the past year but I know others have had it much worse than I and some are still going through tough times.  I hope many of you also are experiencing a richer life or have the opportunity to experience a richer life in the future.  I just recently retired from the Marine Corps and there's a saying in the Corps as well as the other Military services that goes something along the lines that freedom has an even deeper value for those warriors who have put it on the line to defend it.  In a way I think it's the same for those who have fought and are still fighting for our lifes in this battle against melanoma.  We all gain a much greater appreciation for how precious life is.

Take care,

Brian

Login or register to post replies.

bikerwife's picture
Replies 6
Last reply 1/20/2013 - 1:06am

I have been posting for over a year now. I apologize to all of you. Jerry emailed me to let me know that the stages only go to four. The doctor that diagnosed Lynn with cancer told us it was stage 5 so I took him at his word. I've never asked our melanoma team what stage it is cause I knew it was bad.

Lynn had 7 brain Mets the first time. Later he had 6 more. He has a met on his kidney and inside chest cavity. He has had tumors pop up all his body. A lot of them disappeared with his Zelobraf. 

I apologize for saying something that wasn't so. This board has been very educational and helpful. I've seen a lot of stage 4 post and thought if there's is that bad my husband's must be worse. Know I think if they can do this could at stage 4 . We can to.

My husband leg has jumped up from 223 to over 300 so I'm feeling Zelobraf is coming to an end although he has no symptoms showing.  What ever stage it is its a fight. 

What God leads u to he will. Lead you through

Login or register to post replies.

Kelli100299's picture
Replies 4
Last reply 1/19/2013 - 9:24pm
Replies by: Janner, Anonymous, Kelli100299

It was a year this month that I was diagnosed...Clark Level 4, Breslow 1.2MM. I remember being scared, upset, confused and sick. There hasn't been a day since that I haven't thought about it or everyone on this board. I had a Pet Scan in October that came back clear, keeping my quarterly Dermatologist visits, so far so good...and saw my Surgeon yesterday and I am healing well. Just wanted to check in with my MPIP friends and let you know that whether you are recently diagnosed or been fighting it for years. Keep your head up, it does get better and you are always in 'someones' thoughts. Much love my MPIP friends....Kelli

Life is ten percent what happens to you and ninety percent how you respond to it. Lou Holtz

Login or register to post replies.

Rocco's picture
Replies 3
Last reply 1/19/2013 - 9:08pm
Replies by: Jim M., Anonymous, awillett1991

Just got scanned yesterday with results today.  Appears there may (or may not) be inflamation around my thyroid.  Any MDX/Ipi/Yervoy survivors that now have thyroid issues?  I finished my MDX/Ipi trial in Feb 2009.

Thanks for any replies.

Rocco, IV since 2005, NED since 2009 thanks to Ipi

Luke 1:37

Login or register to post replies.

Brendan's picture
Replies 8
Last reply 1/19/2013 - 7:27pm
Replies by: Tina D, NYKaren, JakeinNY, DeniseK, Randy437, Swanee, aldakota22, Anonymous

Hi Everyone,

I signed up in September to thank Brenda (Brenda-you and Kevin continue to inspire me and others!), but this is my first post about myself.

I have been stage IV since Sep 2011 (more details on my profile). I had a craniotomy in November to remove a brain met and just received the good news that I am still NED...MRI and CT came back clean.

I have visited this site often and would like to thank everyone for their contibutions and honesty. I always say to myself, "We are fighting cancer-it's not supposed to be easy," and this website often helps in the fight.

To the people out there who are new here I would like to offer some unsolicited advice that has helped me:
1-Go to an oncologist who specializes in melanoma.
2-Go to an oncologist who specializes in melanoma.
3-Reread 1 and 2.
4-Be careful with this website. I have learned to use it for inspiration. It has helped me through some tough days, but some days the scary stories make things worse (just my opinion-I realize we are all doing what we can and the scary stories are inevitable).
5-Check out the posts of CharlieS. His story (and his grin!!) will make you smile.

Good luck and God bless.
Brendan

Login or register to post replies.

Pages