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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Jeff's Mom's picture
Replies 6
Last reply 6/3/2012 - 5:52pm
Replies by: awillett1991, Jeff's Mom, Anonymous, lhaley

Quick question - anyone out there on one of these anti-pdL1 trials (the ligand trial)?  We've been looking at options and this one keeps popping up as a possibility:

http://clinicaltrials.gov/ct2/show/NCT01375842?id=pcd4989&ra

Any information would be greatly appreciated.

Thanks,

Jeff's Mom

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audgator's picture
Replies 3
Last reply 6/1/2012 - 1:40am

"CT examination demonstrates significant decrease in (sic) near complete resolution of some of the previously described target lesions within the lung and liver; however, there is enlargement within splenic lesions, a right mesenteric lymph node, 7mm left anterior abdominal pelvic juncture lymph node, and an epicardial lymph node."  So say the good folks at Moffitt.  The trial coordinator calculated the results as a 78% decrease in pathology.  Now I get to do the 2nd phase of the anti-PD1 trial.   Dan  

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lhaley's picture
Replies 7
Last reply 6/1/2012 - 11:28am

Yesterday I went for CT scans and a brain MRI.  The news was mixed.    The CT showed the lung nodule has remained stable so we are waiting again.  It's now been about 18 months with only growth of a few mm.   The brain mri was a follow up from 8 weeks ago when they weren't sure if I was having a recurrance, necrosis or scar tissue.  The good news was that it was scar tissue and is shrinking!!!    Since this is deep in the brain it would be difficult area to remove again.  The bad news was a new met.  This one is small..... 3.3mm. It is in an area to get to.  Last time my large tumor responded at 4 months by killing 70% of the tumor so I am hoping this time it blasts it away much quicker with no issues.  I had the crainectomy because of the edema and how the steroids were wasting my body.

This met is so much smaller and at an easier area. The best news is no steroids!   I do admit that I'm upset that another one has shown up so quickly.  Hopefully this will occur next week.  The receptionist has not called yet to schedule. 

I am still having some issues from the last tumor.  Neck issues, off and on eye problems, weak knees ect.  I have an appointment on Monday with a Nuerologist who will hopefully help me deal with these issues. 

I was offered a trial with dabrafenib but choose to stay with the SRS. 

Linda

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blairashley's picture
Replies 12
Last reply 6/3/2012 - 8:49am

Can someone point me toward some streches for after a total LND in my right arm?  I'm only 12 days out, but I can barely lift my arm.  My armpit feels like something was sewn too tight and my range of motion is gone.  I can see something long & skinny in my armpit that sticks out when I lift it at all. I definitely realize that I am not speaking in proper medical terms -- just describing the sensation.  Thinking that physical therapy might be necessary, but would love some at home techniques. Thanks!

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eerye70's picture
Replies 12
Last reply 3/11/2014 - 2:29am

Just wanted to let you know about Mr Grady Lewis. This man was so kind to me when i first came on the board. He seemed to really be struggling the last time he posted and i just wanted to know how he was doing. I am sorry to have sad news. But at least i know he is no longer suffering or hurting any longer.

Grady Carl Lewis, of Hoboken, died Thursday, March 15, 2012, at Hospice House Satilla following a courageous three-year battle with melanoma. He was 49.

He was born September 23, 1962, in Waycross, a son of Carl Howard and Bernice Stuckey Lewis. He was preceded in death by his grandparents, Ernest and Frances (Fannie) Lewis and Henry Grady and Maggie Stuckey.

He graduated from Southwood School and the University of Georgia with a bachelor of science degree in forestry. He was owner of Lewis Oil Company, Lewis and Raulerson, Inc., and Friendly Express, Inc., serving the businesses for 25 years. He enjoyed reading, playing the guitar, restoring old cars and timber cruising with his father. He especially enjoyed traveling with his wife and sons. His favorite band was the Beatles.

Survivors include his loving wife of 23 years, Bonita Hanchey Lewis; two sons, Carl Virgil Lewis and Gavin Grady Lewis; parents, Carl and Bernice Lewis, Waycross; brother, Mark Lewis, Decatur; sister, Anna Lewis, Waycross; nephews, Avery Lewis, Darin Lane and Brad Lane; nieces, Karla West and Kaylen Purvis; father-in-law and mother-in-law, Virgil and Virginia Hanchey; sisters-in-law, Cheryl (Charles) Allen, Darlene (Terry) Lane, and Karen (Kelvin) Purvis; brothers-in-law, Eddie (Glenda) Hanchey, Belton (Lesley) Hanchey, Jerome (Debbie) Hanchey, and Kirby (Cindy) Hanchey; nieces and nephews, Stephanie Dunsmore, Samantha Sears, Chris Allen, Dustin Allen, Christy Hanchey, Deanna Hanchey, Jason Thrift, Caylie Hanchey, Chad Hanchey, LaDale Hanchey, Leighandra Hanchey, and several other relatives.

Time to put on your big girl panties and deal with it!

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natasha's picture
Replies 13
Last reply 9/4/2012 - 2:46pm
Replies by: Anonymous, Harry in Fair Oaks, Phil S, natasha

Hi ! I am stage 1 Breslow 0.2 and exept WLE I was not offered to do Scans ,Xrays or even blood work.

I read a lot here on this forum and can see people with stage 1 have all this done.

Does it mean my Doctors don't do everything ehat should be done ???

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H555's picture
Replies 7
Last reply 6/1/2012 - 10:59pm

I had my first scans today after starting Zelboraf 8 weeks ago. had to go to 1/2 dose in the first 10 days because of skin reactions and 3 weeks ago began adding back one pill a week. today I'm hat 4 pills in the am, 3 at night. I've only had 3 days of joint pain. I'm losing some hair, head hair is changing texture, i have a ton of skin tags and most of my moles are changing. when we started this I had a collapsed upper left lobe, panted to breathe and coudln't finish a sentence. i was pretty sick and pretty worried.  I had one 3.5cm met, most of the many others were pretty small but too many to count. Today almost all the right lung is clear, the left lung has very few observable mets and the 3.5 cm one that was blocking the airway is about half that size and the airway is unobstructed and the lobe has reinflated. and I feel great. other than increasing sun sensitivity i've begun doing "retirement" things. My radiation onc dr called 4 hours after the CT scans were done. I have great skilled compassionate docs, a great supports system, people all over the world praying for me. I'm a very fortunate many. I hope all of us get to this point and better. I'm eager to see what comes out after the ASCO conference next week. and I'm thankful to have found this board.

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Newmom's picture
Replies 8
Last reply 6/4/2012 - 7:24pm

I have been trying to find out the results of my daughter's biopsy for the past two days and they kept telling me it is not available yet.  I just obtained a copy of the report and it says it was completed and faxed to the drs office yesterday morning.  Why do they do that?  Whenever I called they would tell me they would contact me as soon as it is available but they never did.  This is so frustrating ...

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Anonymous's picture
Replies 2
Last reply 6/2/2012 - 7:47am
Replies by: Anonymous, AlisonC

what does 'partial focal regression' mean melanoma pathology report?  is it an independent prognostic indicator?  why would one report say this, and another opinion says "tumor regression: absent" ?

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Snickers60's picture
Replies 12
Last reply 5/30/2012 - 11:42pm

We are traveling to MDA every month.   We have to fly Southwest, and have to do hotels, food, exp. etc. -  and a cab ride with tip is almost $85.00.   Sometimes, we stay up to 3 nights.  I don't know how long we'll have to do this.   How often do you see your Doc ?  

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 !

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/29/2012 - 5:41pm
Replies by: Anonymous, natasha

Is it agreed upon that WLE surgical margin for Breslow less than 1mm should be 1cm?  I've read some evidence that suggests 2cm margins may have lower rate of local recurrence? 

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Anonymous's picture
Replies 24
Last reply 6/26/2012 - 10:56pm
Replies by: Cindy33, PlantLady, natasha, Anonymous, Harry in Fair Oaks

I am beside myself.  My second opinion on slides has resulted in a worse diagnosis of malignant melenoma.  This was an old mole that was biospied and atypcal but only a little and grew back.  What does this mean?  Does this mean I have to change the way I live my life?  Does everyone have at least one melenoma but not know it? How common is this?  It was a noninvasive melanoma confined to my first layer of skin.  I am leaving on holiday for the beach next week.  Was dreaming of sun and sand.  I am now noticing odd pains in my head and joints and scared it has spread.

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willtolive's picture
Replies 10
Last reply 9/16/2014 - 9:16pm

Hi everyone.

Just got the news today: The PET/CT scans revealed that my wife is still NED - 1 year since we were told that Ipilimumab had worked so well. For those of you who cannot remember my wife, please click on my profile/my earlier posts to read more about our story. The battle has been going on for 5½ years now, but for the first time, we do dare dream of a future and freedom, without this ugly disease playing such a huge part.

I hope so many of you will still keep faith. Stay positive, because believing is half the way to freedom.

 

Kind regards

willtolive

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bruski1959's picture
Replies 11
Last reply 5/31/2012 - 4:16pm

A month after finishing her 4th Yervoy treatment, Jackie went home to be with Jesus on Sunday, May 27, 2012. She had suffered with various health issues all her life, and most recently has been battling melanoma for the last year or so. More or less her body gave up due to the ravages of Tuberous Sclerosis Complex, LAM, islet cell cancer, and melanoma. She was 57. We renewed our wedding vows on Saturday, May 26, 2012, just 17 days short of our 20th wedding anniversary. I have lost my wife, my best friend, and the person for whom I was her caregiver and advocate. She is no longer suffering, no more pain, no more tears, and no more diseases. She was ready to go when she received the stage 4 diagnosis, yet waged yet another valiant battle with another insiduous disease.  Jackie is my hero and has inspired many people with her courage to battle seeminly insurmountable odds. Jesus called her home, and now she is walking on streets of gold in heaven, singing with the heavenly choir.

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NYKaren's picture
Replies 5
Last reply 5/31/2012 - 8:02pm

 

Hi everyone. Another reinduction ends after 3 infusions.  After 6 weeks since my 3rd (and final) Yervoy infusion, I am done.   I’ve been to Sloan’s Urgent Care 3 times, the last one being this past Friday night, presenting with diarrhea (every day for 6 weeks) and fever.  Even being on 70 mg. of prednisone didn’t take relieve the diarrhea completely.

I finally weaned off the Prednisone this past Monday, and we attributed my extreme weakness to the wean when I showed up for my 4th ipi infusion on Thursday, and Dr. Wolchok told me that I was effectively done with ipi.  (Oh yes, I lost 20 lbs. too.)  I felt so physically awful that I should have turned right around and checked into the hospital.  I had no fever then, and we didn't know my white count was high.  I think some small part of me was still stinging from not being able to complete the ipi, fool that I was.    So on Friday when I awoke w/102, they were already calling with the high-white-cell count and telling me to get back to the hospital.  They took yet another C/T scan, this time it showed significant colitis.  The first visit was about 4 weeks ago with same presentation, but the C/T didn’t show colitis, so the doc was treating it like mild colitis…with an infusion of steroids, continuing on the steroids at home.  The second visit was 2 weeks ago, CT was “closed” in the middle of the night—who know CT’s closed in major metropolitan hospitals??—they took an x-ray, said it looked fine, and sent me home.  The first two times I took Tylenol in the morning when I awoke w/fever, but it didn’t return in the Urgent Care.  THIS time, it returned that evening, but I know the Remicade had been on order anyway.  They also have me a bag- full of Cipro.  And that private room I was so happy about in Urgent Care, it was the Isolation Room because I was presenting with fever and a high white count.  I thought that was actually pretty funny.  And oh yes, I started feeling better on Saturday from the Remicade.  Don’t know if I’ll need another infusion or not.

Although there is a big improvement on my face, some of the  mets on are partially returning even after Dr. Haplern freezes them and I apply Aldera, and the “control” mel that he’s not freezing (for PD1 eligibility purposes) remains the same size, so the big question is, WHAT’S NEXT??  I guess my next PET, whenever that might be, will tell more.

Hope everyone had a better weekend than I did!

karen

Don't Stop Believing

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