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

Glory to God in the highest !   We just got biopsy results back from the pesky little spot on Wayne's leg that kept showing up in the PET.  It was NOT MELLY !!!!!!   That means that in ONLY 7 weeks, Wayne was CANCER FREE in JUNE when we first got the results showing all Melly was gone but this one tiny spot.   They watched it since then, and it kept reappearing on the PET, so they did a biopsy last Friday and we just got results ! 

IT IS A STRANGE BENIGN TUMOR that they will still probably removed called :    Cellular Schwannomas

WE ARE OVER THE MOON - OUT THE ROOF - ON TOP OF THE WORLD !!!   DR. B. says he has made MELANOMA HISTORY ON ZEL at MDANDERSON. That he has never ever had another patient respond this well.   WOW...............

WE ONLY PRAY THIS WILL GIVE SOMEONE OUT THERE "THE HOPE" they need to hang in there...keep on keeping on.   KEEP THE FAITH ! 

To OUR LORD AND SAVIOR JESUS CHRIST - and THE GREAT PHYSICIAN, WE GIVE ALL THE PRAISE, HONOR AND GLORY ! 

BLESSINGS TO ALL,  smiley

Nancy (Devoted wife of 3 X warrior Wayne)   GOD BLESS HIM - HE HAS BEEN A WONDERUL WARRIOR !

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.

jatbrown's picture
Replies 11
Last reply 11/10/2012 - 6:00pm

Can anyone share these last weeks of shots with me?  How did you do? Side Effects? 

Login or register to post replies.

JoshF's picture
Replies 13
Last reply 11/9/2012 - 3:16pm
Replies by: mama1960, Mandi0280, Anonymous, JoshF, dellriol, Richard_K, audgator

Just had scan recently and was NED!! That puts at 18 months!!! My onc says 2 year and 5 year are key dates. I typically don't post because I have feelings of guilt that I have been doing well while many others are not and that bothers me. Though I was speaking with my oncologist who specializes in Melanoma and he said there are a lot of good things in the pipeline that could make significant impact. He obviously didn't go into great detail but he left me curious....anyone out there have an inkling of what he may be referring to? As we all know this cancer is on the rise in regards to incidence (my step mother was just diagnosed). We need better treatments to deal with this especially when not detected early or for cases like mine where they are unsure if I had a primary dermal leison or an unknown primary. Keep fighting the fight...you're all an inspiration to me!!!!

 

Josh

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

Hi, everyone.   I'm not sure if this has been covered on this board  befrore.  My latest MRI shows new activity in a brain tumor that has already been Gamma Knifed back in February.   Has anyone had this done or have any knowledge of risks?  I'm on my 4th month of ZEL and all other tumors (lungs, stomach, bone) have shrunk or disappeared, including 2 other brain mets....a little frustrating.  Any input would be appreciated

Thanks

FrankD Brooklyn

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

 

Very interesting data concerning venurafenib survival statistics from the phase I trial.

 http://www.heraldonline.com/2012/11/08/4400762/plexxikon-announces-three-year.html

Login or register to post replies.

KMT2003's picture
Replies 6
Last reply 11/8/2012 - 9:34pm

August 23rd I went for scans and found that I had new areas of concern in my bones in the lumbar area of my back. We started doing many biopsies which kept coming back inconclusive for melanoma. In the meantime, I noticed a lump in my breast that concerned me as well. I had a set back with getting that tested at first too but it did finally come back as melanoma in October... We were discussing Z or trials combining Z with other drugs and doing scans when things kept getting worse for me. I had been dealing with back pain for several months and not being able to do normal things like getting dressed, walking without pain etc. October 16th I was admitted to the hospital after doing on ultrasound for a very swollen and painful leg. I had a blood clot... My doctor was also a little concerned that I could have had a clot in my lungs too because I couldn't talk in complete sentences. However, we did not find any after doing tests so that was great news. I had just gotten my first shipment of Z in the mail that day so we took it to Tampa with us. Our goal for me to be discharged was to get the pain under control from the tumors and my calcium levels in my blood were too high... I was there for about 5 days. My doctor and I decided it was best to skip the trials and start the Z right away. I have been taking it now for about 8 days and am feeling much better than I have in the past few months... No side effects yet but I am wondering when and if they will start??? I am having to still rest my leg due the the clot. I am taking fragmin injections every night before bed plus a variety of other pills along with daily blood work to keep an eye on my calcium levels. I am just glad that am starting to feel better after a long frustrating few months. I hope to be on the road to recovery and share my success with anyone else fighting this nasty beast. Stay positive and aggressive with the doctors! If my husband wasn't as aggressive these last few months I feel we would still be dealing with speed bumps instead of treating this...

Kelly

Login or register to post replies.

dian in spokane's picture
Replies 11
Last reply 11/8/2012 - 4:30pm

Hi,

It's been a while since I was on here, so some of you newer folks won't recognise my name. Briefly, I have a very long history with melanoma, most of it was stage 1, but I advanced to stage 3B back in 2003, followed by high dose interferon and then to stage 4 in 08 with distant subcutaneous mets that were surgically resected, and followed with the MAC/VAC trial, which I completed in 2010 I've been in complete remission since then

We've been following a single nodule in my lung since last year, which, although it has grown slowly from 8.8 mm to 13, has now increased in SUV to 10.1 My oncologist is virtually certain it is cancer and suggested SRS to treat it.

I also have a long history of false alarms in my lungs too, so I'd like confirmation of what we are dealing with before treatment so I am scheduled to see my pulmonary doc for a possible biopsy.

Back when I was studying such things obsessively, I think that radiation was not considered to be very successful foro melanoma treatment. Have things changed?

I know that there's a chance that biopsy attempts will be unsuccessful, so I'm wondering if I shouldn't just get a thoracic surgeon consult and go directly for VATS..then at least we'd have material to biopsy afterwards

I'd love any imput, particularly on any new types of biopsy options for lung mets, and/or input from anyone who has had SRS on the lungs.

And..to forestall questions on the topic, I have never been BRAF tested, and don't think we'll be looking at either zelboraf of yervoy at this time. As long as it's a single nodule, I'll be saving that treatment for the future.

thanks folks,

 

dian in spokane

Login or register to post replies.

A week or so ago I spent the day at MDA getting bloodwork, X-rays and CT scans. All are normal. 3b for 3+ years.

I had a bad lymph node taken out in December 2008, then 20+ more a month later (all of those were negative). 1 month high dose INF, followed by 2K/day of curcumin, care about sun exposure, and lots of BBQ ribs and brisket. Sex, too.

So... I remain grateful for every day I have on the green side of the grass.

My doctors say that the treatments coming are much better than anything thus far. My secretary's MiL is stage 4 and her treatments have worked so far and with far fewer side effects than many of us have had. Hang in there, everyone.

Login or register to post replies.

A week or so ago I spent the day at MDA getting bloodwork, X-rays and CT scans. All are normal. 3b for 3+ years.

I had a bad lymph node taken out in December 2008, then 20+ more a month later (all of those were negative). 1 month high dose INF, followed by 2K/day of curcumin, care about sun exposure, and lots of BBQ ribs and brisket. Sex, too.

So... I remain grateful for every day I have on the green side of the grass.

My doctors say that the treatments coming are much better than anything thus far. My secretary's MiL is stage 4 and her treatments have worked so far and with far fewer side effects than many of us have had. Hang in there, everyone.

Login or register to post replies.

sharmon's picture
Replies 4
Last reply 11/7/2012 - 10:08pm

Hi all,  Brent is here at Moffitt waiting on his biopsy to finish his tests for the Anti PD1 merck trial.  His first infusions is scheduled for the 11th. 

Login or register to post replies.

Snickers60's picture
Replies 1
Last reply 11/7/2012 - 4:56pm
Replies by: Tina D

Wayne and I just returned from MDA on Sat. Night.    THE PET WAS CLEAR AND CLEAN except for that one pesky little spot on his right leg above knee.  Sub-cutaneous fatty tissue, so they did a biopsy on Friday.   We are waiting for results. 

The way they found Wayne's mets in March was through a heart plaque scan, so we are back at Cardio catching up.   He says Wayne needs Heart Cath and possible stents after testing.    

HOWEVER, we cannot have that done until we know biopsy results.   Will have to go back to MDA for surgery to remove that first MAKING HIM TOTALLY CANCER FREE and then he has to wait a short period of time before he can have Cath/Stents.  

OVERALL, we are very excited about results and will be happy now to TAKE CARE OF this pesky little heart thing.   Gilda Radner said:  'it's always something, and then she died"   -  LOLOLOL '

Anyway, we shall find out today about the biopsy, PRAYERFULLY !    I need knee surgery too, so we have possibly 3 surgeries to get done by end of year. 

BUT, Oh what a year that will start out being !   YES !!!!!!

He started Zel on April 23, 2012 and has been clean in ALL ORGANS since June 16th !!!    

WE DO NOT KNOW WHAT NEXT STEP WILL BE - POSSIBLY to keep on keeping on with ZEL !   Will meet that challenge when it comes.

BLESSINGS AND HEALTH TO ALL OF YOU WARRIORS out there !   HANG IN THERE - NEVER GIVE YOU ! 

Nancy (Devoted wife of 3 X Warrior Wayne) 

 

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.

Jim M.'s picture
Replies 8
Last reply 11/7/2012 - 8:47am

Hi everyone,

 I want to thank all those who have brought me to this milestone: my medical team at Moffitt and elsewhere, fellow warriors, my family (biological and Christian), and all who have had a hand in encouraging/supporting me. Most of all I thank my Savior, Jesus Christ for all the blessings he showers upon me. There is always hope! Never give up! This is a wonderful community eventhough we never wished to be a part of it.

God Bless you,

 Jim M.

LND to right axillary: 11/07

radiation: 12/07-1/08

Ipi with peptide vaccines: 3/08-11/08

Stage 3C

NED!

Login or register to post replies.

swissfarm7's picture
Replies 2
Last reply 11/6/2012 - 10:51pm
Replies by: POW, Mandi0280

Thought I'd share an update since I really appreciate reading present and past feedback on various treatments.  My husband (stage 3B) is on his fourth and final week of high-dose interferon.   I mentioned here at the start that his side effects have been fairly manageable.  Based on all I read, I was prepared for him to be nearly out of commission.  In reality he does work each day ~ and as a dairy farmer, it's not a desk job. ;-)  

Mondays ~ the first day of treatment each week ~ have been the most difficult.  He's had a couple of instances in which he was extremely nauseated and gripped with a severe headache.  Generally, though, his side effects are on par with a low-grade flu.  He previously functioned just fine on six hours of sleep each night.  Now, he's typically in bed by 8 pm, sleeps 10-11 hours, and naps for an hour or two in the afternoon.  He's fatigued, has lost 10 pounds, and is what I'd describe as listless.  Not depressed per se, but just not himself.  Maybe those of you who have experienced the treatment ~ either directly or indirectly, as a caretaker ~ know what I mean.

His ANC (Absolute Neutrophil Count) numbers (white blood cells) have been decreasing, which is to be expected.  But today it was low enough to require a dosage reduction, so he'll finish out this last week at half of what he has been receiving.  Then he'll move on to sub-q injections three times per week.

Despite persistent "encouragement" on my part, our insurance will not pay *anything* toward the injection doses.  Paying for a drug to be administered intravaneously but not paying for it to be self-administered sub-cutaneously.  Where's the logic?!  Through the clinic, we were able to register for the ACT Patient Assistance program.  It was strangely quick and easy to be accepted into this program, and the interferon will be sent directly to our home.  Something about the whole thing doesn't feel quite right, like there are strings attached that I don't know about yet or something.  I don't know if it's a big tax write-off for Merck or what?   Anyway, at this point, it's all we've got.

One thing I'm realizing, as he receives care now at our local hospital, is how exemplary was the attention we received at Seattle Cancer Care Alliance and University of Washington Medicine.  That's where we went to immediately his diagnosis, where he received his surgeries and was under the care of surgical and medical oncologists whose specialty is melanoma.  I absolutely felt we were in the best hands possible, people who are experts in this field and whose knowledge I could trust.  Our home hospital is very, very good, but the reality is the oncoloists there don't typically deal with melanoma.  They're good people, well-educated and well-trained, but they ~ and the staff at the infusion oncology clinic ~ are far more familiar with other cancers.  I therefore feel a lot less comfortable and a lot more weary, always wondering if they really know what's best. 

Anyway.  I'm rambling, I suppose because this is my outlet to talk to people who really know about this disease.  I'm always reading here, cheering for all of you. 

Warmly,

Colleen

Keep on keeping on.

Login or register to post replies.

Souxie_q's picture
Replies 8
Last reply 11/6/2012 - 5:06pm

Well everyone I posted on the 17th of October about my sister, she passed away on October 22. Unfortunately her cancer was too aggressive and she was never able to start zelboraf.
Almost 2 weeks out I still can't believe she's gone. I was with her when she died, told her how much she was loved. I'm writing here because the Zelboraf showed up too late for her to use but I have 2 bottles of this. The drug company won't take them back and her oncologist's office said they would try to get them back to the drug company, but I'd rather someone else use them....
Is anyone here in need of it?

Login or register to post replies.

Richard_K's picture
Replies 10
Last reply 11/6/2012 - 2:22pm

 

The good news - Yesterday I got the results from my last scans.  Everything is stable, no change, and I’m thrilled to have completed 32 months on Zelboraf.

The not so good news - For the second time in a row, my bilirubin is high and I am on another one week holiday.  Assuming the bilirubin returns to normal with a retest next week I will restart Zelboraf but probably at 720mg twice per day.

I’m looking forward to breaking that 3 year mark and I hope bilirubin cooperates.

Dick

Login or register to post replies.

Pages