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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Anyone done or heard of ablation (either radiofrequency ablation or cryablation) of a cancer tumor especially a bone tumor?
Anyone know how affective it is?

Looks like there are only a few places in the world to have it done. In the USA looks like for bone tumors only Rita Medical Systems (now AngioDynamics) in MountainView California.

Seems like they have good success for up to 7cm tumors although the larger the tumor the less successful they are.

Seems like they are using this for malignent lesions such as metastaic bone disease. (ie: where all my melanoma currently is).

Basically my current idea to keep from being paralyzed is radiation that starts tomorrow but if that doesn't get rid of the T10 vertebrae tumor I'm looking at other options for that specific tumor. Of course I will also continue the Tafinlar/Mekinist combo as I also try to get into a PD1 trial all assuming the radiation gets my spinal cord safe enough to travel. Yeah slightly complicated changing plan but I gotta try to do what I gotta do.

 

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Dave from Ormond's picture
Replies 10
Last reply 3/11/2014 - 1:42pm
Replies by: Dave from Ormond, BrianP, Anonymous, kpcollins31

I have had conversations with multiple people who have had the Pituatary Gland swelling as a side effect on Yervoy/Ipi.  I too had the swelling and we resumed dosage after the swelling was brought back down.  Some of you had said that your doctor did not resume dosage because the swelling was an indicator that the Yervoy was working.  

Here's my bad news.  I finished my 4th dose on November 20, 2013.  CT Scan on December 12, 2013 showed zero new growth.  CT Scan on February 12, 2014 showed 11 new growths.  Multiple spots in both lungs, liver, spine, vertebrae, stomach and two bone spots.  

While they are saying that there is still a chance that the Yervoy will stop the growth and may even kill the cancer, we are going to Moffit in Tampa and start another treatment or go BRAF/MEK locally.  Waiting for them to call me to set up the appointment.

Don't want to be the bearer of bad news or the squasher of hope, but I thought it was important that I share my experience.  I truly hope that yours turns out better.

Good luck to all of you.  I've got to get my boxing gloves back on and get ready for the next round!

Dave

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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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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Janet Lee's picture
Replies 7
Last reply 3/10/2014 - 9:12pm

Hi All. As Don was finishing up his 16 radiation treatments to his pelvic/groin area, he developed new pain and they found another tumor, so he had an additional 10 treatments to this new area. The goal of our awesome radiation oncologist was to get his pain diminished and get us to Florida for a break from this horrific, cold, snowy, icy winter.

We got to Florida and the weather has been gorgeous. Don is feeling ok. He developed a blood clot in his leg, but that was taken care of by medication (after 12 grueling hours in the ER and admission to a strange hospital!). 

Don is apparently having a "partial response" to Yervoy/Ipi (areas above the waist and in the brain have been stable since the end of August!). But below the waist, not so good.

Our next step will be to find a PD-1 or Anti-PD1 trial that seems most appropriate for him.

My question: what exactly is involved in taking part in a trial? I know there can be a lot of paperwork and tests and scans, etc. to qualify. But I'm wondering if the trial necessarily has to be local. Do all infusions have to be at the geographical location of the trial, or can they be given at another site?

Thanks for your help!

Janet

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POW's picture
Replies 1
Last reply 3/10/2014 - 1:19pm
Replies by: Gene_S

Does anyone know how Aldakota is doing? Last I heard, he had lepto and was considering going to MD Anderson for intrathecal treatment. If you are in contact with him, please let him know that I am still praying for him every day.

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geminilion's picture
Replies 2
Last reply 3/10/2014 - 11:34am

So I'm starting my 10 days of whole brain radiation tomorrow. My neuroncologist said I would need chemo afterward, any idea what they might use?

She also told me I am BRAF positive so that's good.

 

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Between the 50-57 minutes in this video, a man discuses his TIL/ACT treatment.
http://www.youtube.com/watch?v=ad8DJ-CLlJc&list=PLOnM_erAQqIDeUsIvoqCv40...

I'm me, not a statistic. Praying to not be one for years yet.

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Jewel's picture
Replies 2
Last reply 3/10/2014 - 9:51am
Replies by: Kelly Smith, Jewel

The great news is my husband remains NED 2 1/2 yrs from a stage 3C diagnoses, bad news

is he has a 5cm cyst in left kidney. It is giving him no symptoms. Not sure yet what the

next step will be....still we are over the moon.

Jewel

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/10/2014 - 6:02am
Replies by: JerryfromFauq, maria d, mau, Phil S, Anonymous

My primary and subsequent subq tumors were cutaneous. Initial diagnosis superficial spreading melanoma in situ. 5 years later groin node 4cm tumor. Fast forward to 10 years later and melanoma found in fibroid in uterus. Is this a cutaneous met or mucosal?  Does it matter in terms of treatment?  I am BRAF and cKit neg .  But not sure which tumor sample was used for testing (subq from arm or fibroid?) so am going to ask new oncologist to retest from fibroid sample if possible. Side question, can such testing be done a year post surgery?

i had hysterectomy with fibroids removed but had new tumor in same place and on vaginal cuff last summer. Have completed pd1, ipi ,and radiation. Tumor stable but looking for next step so want to know if cutaneous or mucosal for possible options.

 

Thanks for for any knowledge you have to pass on to me.  

Maureen Elise

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http://www.pnas.org/content/109/50/20373.full.pdf

Endogenously produced nitric oxide mitigates sensitivity of melanoma cells to cisplatin

Melanoma patients experience inferior survival after biochemo-therapy when their tumors contain numerous cells expressing the inducible isoform of NO synthase (iNOS) and elevated levels of nitrotyrosine, a product derived from NO. Although several lines of evidence suggest that NO promotes tumor growth and increases resistance to chemotherapy, it is unclear how it shapes these outcomes. Here we demonstrate that modulation of NOc-mediated S-nitrosation of cellular proteins is strongly associated with the pattern of response to the anticancer agent cisplatin in human melanoma cells in vitro.

 
 

 

I'm me, not a statistic. Praying to not be one for years yet.

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mary in Rhode Island's picture
Replies 2
Last reply 3/10/2014 - 5:16am
Replies by: JerryfromFauq, Anonymous

I am not sure this has been posted before.  

http://www.dana-farber.org/Newsroom/News-Releases/Immune-system-based-th...

 

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Josh's picture
Replies 6
Last reply 3/9/2014 - 8:58pm
Replies by: Josh, hannahcopeland1, Mat

Hello All,

 

I'm currently 3 weeks into taking the combination BRAF and MEK inhibitor and over the past 10 days I've gotten a fairlly crazy acne-filled rash on my face. Seriously, my entire face is covered in whiteheads. I don't just look like a middle school student who subsists entirely on fried foods, I look like the one fried-food-eating teenager whose acne is ten times worse than the rest of his fried-food buddies. 

 

My doctors took me off of the BRAF/MEK drugs temporarily for the past week, and have prescribed two different steroid creams as well as an antibiotic. However, the zits are just spreading and getting worse. My understanding is that this side effect isn't that uncommon, so my question is has anyone here gotten it, and if so, what got rid of it?

 

Thanks a lot for any help!!!

 

Josh

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/9/2014 - 11:58am

When looking for possible recurrence is it worth it to do the scan without the dye? if so why?

I am oppossed to the dye, but will still do the CT scan if it will show any tumors or abnormalities still. Of spine and pelvis.

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Bubbles's picture
Replies 2
Last reply 3/9/2014 - 10:30am
Replies by: Bubbles, Anonymous

Yes, Virginia...despite the nay-sayers....there really ARE STILL some openings for a Nivolumab trial in Tampa.  Was there Friday and heard it from the horse's mouth and had to sign the amended protocol myself!!!!

Here's the deal:  An additional arm has been added to my clinical trial...technically named:  A phase 1 trial of a vaccine combining multiple class 1 peptides and montanide ISA 51 VG with escalating doses of anti-PD1 antibody BMS-936558 (now known as Nivolumab) for patients with resected stages IIIC/IV melanoma, NCI protocol P-8316.

The new arm = Nivolumab and Ipilimumab Administration
"You will receive your first dose of nivolumab with ipi within 28 days after your screening blood draws.  The dosage of nivo will be 1mg/kg with ipi at 3mg/kg for all patients in this group. Both drugs will be given.  Nivo with ipi will be given as an IV infusion as an outpatient... The next doses of nivo with ipi will be given 3, 6, and 9 weeks after the first. If at week 12 you have not had a return of your tumor, you may also receive additional doses of nivo, this time at 3mg/kg every 2 weeks for up to 2 years....."

__________________________________________________________________________________

More info on my blog if interested.  They also seemed to indicate that there were still some slots for the nonresected arm....though I am not positive.  But...don't take my word for it!!!  If you are interested.... CALL!!!  Yours, Celeste

H. Lee Moffitt Cancer Center & Research Institute
12902 Magnolia Drive
Tampa, FL 33612
Phone: 1-888-MOFFITT (1-888-663-3488)
Moffitt Cancer Center Switchboard:
813-745-4673 or 800-456-3434
Moffitt Cancer Center at International Plaza:
813-745-1600

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