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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My husband Mike recently under went ACT with IL2 treatment at Moffitt Cancer Center. The Tumor Infiiltrating Lymphocytes were infused followed by 8 infusions of IL2. He experienced some side effects - kidney function damaged, delirium, rash, edema, rigor, etc. It has been 2 weeks now and he gets better each day. He was diagnosed stage 4 recurrent metastatic with internal and some subcuteaneous tumors. The ones we could see are gone so we are hopeful the 6 week scan will show the internal ones are reduced, dead or gone also. One strange thing, rather than blurry vision, his vision has improved to where he sees better without his glasses now. Onc, said he had some patients who said the same thing after surgery but not after IL2.  Anyone ever heard of IMPROVED vision? He had to get glasses for the first time in Jan. about the same time he learned that he had recurrent melanoma (1st time was 2000 treated with excision and interferon). Wonder if the cancer was the cause back in Jan. and if tumor shrinkage now sent vision back to what it was before. No mets on brain MRI. just wondered if anyone had heard of this "side effect" before?

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Anonymous's picture
Anonymous
Replies 0

Lisa, How did you procedure go on your brain??? Sending you positive thoughts.

Anyone hear from Lisa about how she is oing afterher brain procedure???

Maryjo

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Tim--MRF's picture
Replies 2
Last reply 6/2/2012 - 10:22pm
Replies by: Gene_S, Phil S

Many of you will know that ASCO is the annual meeting of oncologists, pulling together some 30,000 doctors from around the world.  The meeting started this morning, and one of the 8:00 sessions was on sequencing treatment for metastatic melanoma.  Here are few highlights:

--Mike Atkins talked about immunotherapy, both the use of IL-2 and Yervoy (ipi), and also the clinical trials with anti-PD1 and anti-PDL1.  These all show promise.   He talked about a small study comparing people who were given Yervoy first, then if they showed progression of disease were put on a Zelboraf, vs. people who were given Zelboraf first then Yervoy.  The group who were treated with immunotherapy first (Yervoy) did better than the people who were given targeted therapy (Zelboraf) first.

--Keith Flaherty then showed data about Zelboraf and other targeted therapies for people who have BRAF mutations.  This includes adding a MEK inhibitor, or using other pathway blockades to treat people who have stopped responding to Zelboraf.  He pointed out that treating with immunotherapy first carries some risks.  Some patients have tumors that are growing too rapidly to wait for an immune response, which can take 2 months or more.  And some data shows that during immunotherapy the cancer evolves into a more robust form that may be harder to treat with targeted therapy.

--Jeff Sosman then talked about patients who do not have the BRAF mutation.  BRAF mutation occurs in about 40% of melanoma patients.  Another 18% have NRAS mutations, and 1-3% have KIT mutations.  This leaves almost a third of patients who have no known driver mutations.  This group may benefit from some more broad based targeted therapy, most of which is still in early development.  Some may actually have known mutations, but not at the normal spot.  Most BRAF mutations occur at a place called V600e, but he has found a patient with a BRAF mutation at a much different location.  And, of course, immunotherapy remains an option for these patients.

The bottom line is that we still have much to learn.  The consensus seems to be that if a patient has the time to wait, immunotherapy may be the first line of attack, and for very healthy patients that may mean starting with IL2.  Still, a lot of disagreement in this approach.  This makes treatment decisions challenging for doctors and even more challenging for patients.

The good news is, we have a few things in place and several things in development that all have some impact and, in some cases, significant impact.

More to follow.

 

Tim--MRF

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hbecker's picture
Replies 3
Last reply 6/2/2012 - 11:44am
Replies by: Anonymous, hbecker, lhaley

Hi, we're new here - new to melanoma and just learning. My husband's case is atypical - no sign of melanoma on the skin, just a mass removed from under his scalp. The path report doesn't include depth or thickness - just says that a "primary dermal melanoma gross measurement 9.5mm" is possible. "Large nodule filling the dermis with central necrosis composed of mitotically active, S100 positive, focal CD68 positive epithelioid cells." Also, immunoperoxidase stains found positive for nerve growth factor receptor and SOX 10, negative for Melan A and HMB45.

Does anyone know what those things mean?

Thanks for whatever you can offer.

blogging at www.hazelbecker.com

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AlisonC's picture
Replies 9
Last reply 6/12/2012 - 12:47am

Hello fellow travelers,

I apologize that people have been asking about my friend David and that I haven't been earlier to share the news..even now it's news I don't want to write. David died on March 29th....leaving his wife Leah and their three young children. We all teach in the same school here in Singapore and it hit the community very hard (particularly since it's been a brutal year for our "family" here, with another colleague diagnosed that week with a stage IV brain tumour and a colleague diagnosed with stage III carcinoma only 3 weeks ago, on the day she gave birth to her second daughter). There was an amazing memorial in the school auditorium with over 700 people, including Dave's students, and out-takes from some of his films....he was a film teacher and in fact this time last year was preparing to shoot his first full length film, called "The Durian King" which you will find online if you google. Students and family have been raising money to finish the film's editing since he died because it was a life-long dream of his.

Dave didn't get to use temodar. His Mel just grew SO fast at the end. He was fine and in remission til October when he had his first 3 brain mets (resected and SRSd), then all was well until March, when there were 3 more...but pretty much right after they started WBR in the 2nd week of March, he was less responsive and in hospital. A scan 10 days later showed more than 20 tumours and he died a few days after that. He was BRAF positive - which we thought might mean he'd caught a break- but zelboraf didn't offer him what we had hoped.

I don't think I've ever known what to say when telling people, but telling this community seems particularly hard because I know how much I - and many people - use this forum to keep themselves buoyant ...or at least coping. That's been a disservice to Dave though because I should have posted earlier to let you know of his death since he had friends and a cheer squad here.

I hope it will be the last death for a long long while among the MPIP community.....

AlisonC
Stage IIIB
NED since 2001

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mike_nj's picture
Replies 3
Last reply 6/8/2012 - 7:50pm
Replies by: Anonymous, natasha

Well,  about 3 weeks ago or so, the right side of my face started to swell near my right ear and 2 days later a blackish lesion suddenly popped up on my right upper arm opposite my WLE.  First thoughts were possible connections with melanoma, as I am stage 3B out about 8 years. Primary was right upper arm in 1999 and in 2004 a big node was removed from my right axilla. This was followed by radiation and peptide vaccine clinical trial.

These strange events were in the same local vicinity. But I did remember that Dr Casey used to post and remind us not to look for zebras when it was more likely something else may be occurring

My doctor friend looked at me and suspected parotitis and presribed an antibiotic and my nurse daughter dismissed the black lesion as a blood blister, which can happen in my swollen, lymphedema ridden arm.  Just never had such bad timing.with 2 simultaneous signs like these

Luckily, both the doctor and the nurse seemed right as both issues went away in a week or so.

Routine chest X-ray the following week showed no interval change so my 8 year status still looks OK.

Over the years as one holds onto hope and in the corner of consciousness, mindful of a possible transition back to active melanoma, weird coincidences like this happen from time to time for many of us.  Luckily, I have been fortunate so far and thank God for that.

All the best to all those with melanoma and their caregivers.  God bless all of you.

I am sure to face more mind games in the future and I hope to recall Dr Casey's advice with my first thoughts.

Mike from NJ

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acortes's picture
Replies 3
Last reply 6/19/2012 - 4:36pm
Replies by: acortes, Swanee, washoegal

My sister's cancer came back and unfortunately it came back hard. It spread to spine and brain. She is getting brain and spine radiation and yestrday was her first Yervoy treatment. I would like to know about other's experience so that we can accomodate her as much as possible. Doctors are not being very positve. They are giving her weeks to live, but we are keep hope!

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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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