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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atcchris's picture
Replies 2
Last reply 6/19/2012 - 4:00am

Not sure if this is a dumb question or not... probably would go better if I searched the site to see if it had been covered before... but what the heck.

With Zelboraf, why is it once you've hit NED on scans, we don't take a break from it and keep scanning?  Is it because it doesn't work that way.. impossible for it to kill anything other than tumors (IE, can't clean out the cellular level of the disease, or whatever it is that causes new tumors?)

Wouldn't that at least buy extra time before the resistance sets in?

Thanks... I'm figuring the answer is probably "it doesn't work that way'  but you never know.

 

Chris

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Replies by: Janner

Saw this and thought I would share.

(Janner I lost your email but thought you might find it interesting. I just read your bio and you helped me so much about 5 years ago. Mary)

/http://www.forbes.com/sites/bruceupbin/2012/06/18/wait-did-this-15-year-old-from-maryland-just-change-cancer-treatment/

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LynnLuc's picture
Replies 9
Last reply 6/18/2012 - 9:12pm
Replies by: margaretrogers57, Anonymous, azulu, LynnLuc, kylez, Maxximom

I have to share this...they are bumping up the Anti PD-1 trials -they are also happy with my NED statis! ...I know this because BMS called me just now...they are also going to send me a job application because I added a PS  stating I want my life back and I need a job...any available LOL  ( I just go the job app =:o)

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Snickers60's picture
Replies 8
Last reply 6/18/2012 - 8:05pm

He was diagnosed March 13, 2012 with mets from a 1999 ear lobe mole, and started ZEL on April 23, 2012

We returned home today from MDANSERSON bouncing off the walls with joy ! 

Yesterday,  Dr. B showed us the PET and every single one of his tumors were GONE !

He said he ALMOST NEVER saw Liver mets go, but Wayne's were, which put him in the 4% of folks who responded this well on ZEL.

2 liver

4 lung

1  L-5

1  Distal Leg bone

ALLLLLLLLLLLLLLLLL GONE !!!!!!!!    

I hope this will encourage someone !    I pray it last.   He will continue on full dosage of ZEL for now and they will do all the SCANS

again in 8 weeks.   We are so encouraged - we're JUST PLUM OUT OF OUR MINDS !   LOL LOL

MAY YOU BE ENCOURAGED !!!!!!!!!!!!  :-))))))))))

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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jessebug99's picture
Replies 3
Last reply 6/18/2012 - 7:28pm
Replies by: H555, Erinmay22, AllyNTAus

Was wondering if anyone else has experienced bumps in throat (like maybe squamous cell tumor).  I have been on Zelboraf for 5 weeks and had some really hard side effects.  Noticed a few days ago a bump on my uvula (spellcheck).  I have a checkup appt. with oncology on this Thursday.  I have had a lot of warts or bumps pop up on my face, back, and arms just within the last couple of weeks, also.  Right now according to the last MRI I had, there is no cancer in the brain and the PET/CT showed minimal node involvement near my left armpit. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/18/2012 - 6:12pm
Replies by: LynnLuc, Harry in Fair Oaks, Anonymous

Hi

I am 62 years olds and  live in Californa. I have been receiving SSDI for 6 months. I am stage 4, and on a clinical trial for 6 mos. and just became  NED.

I know nothing about what qualifies a cancer patient to be able STAY on  SSDI. Will SSDI re-evaluate my stage 4 status and when to determine if I am well enough to stop SSDI??

My husband & I pay for our insurance plan ourselves which is very expensive.Our annual premiums are over $13,000. then we have a high deductible of $7500 (each) so  we are looking at a lot of money for "out of pocket" for  medical insurance.

My SSDI was approved on June 2011, then I waited 6 months to get my first check which I received in Jna 2012. How long do I have to wait before qualifying for Medicaid??Do I have to wait 2 years from June 2011 before  I qualify for Medicare??

What is Meicaid and how to you qualify for Medicaid??/

I would appreciate any information you can give me.

Thanks so much for taking the time to reply to my questions.

Christine

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lhaley's picture
Replies 13
Last reply 6/18/2012 - 5:22pm

Two weeks ago it was discovered that I had 1 new brain met (original was a little more than 2.6cm) and it was small at 3mm.  Yesterday I went in for brain mapping and was shocked to find out not only had this one grown but a new brain met has shown up.  On Monday I will be having SRS for both small mets. My oncologist wanted me into a trial for brain tumors with b-raf - it's the trial that James from Sydney has posted about it.  I have decided to stick with the radiation for now and hoping that I don't have to use the drug, I wish that the trial allowed for both the radiation and then the drug.   

In a little more than 2 weeks I will be celebrating my 6th year as stage IV.  This year has been the most stressful year of them all. 

Linda

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yoopergirl's picture
Replies 10
Last reply 6/18/2012 - 4:55pm

At my last doctors visit on June 4th he said I have more mets in both of my lungs and some fluid also. This week I have been coughing something awful so I called him and was told it is from the lungs and to suck on cough drops and use syrup. Right after I get up in the morning the coughing is non stop and then I hurt so bad. I am having a biopsy on my tumors on June 27th and see the doctor a week later, then will start the clinical trial, my question here is has anyone had this problem and what did you do for it or is there nothing I can do. This cancer sure sucks, am hoping for a cure soon.

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MeNDave's picture
Replies 14
Last reply 6/18/2012 - 7:21am

Dave had his first set of scans since starting carbo/taxol.  He also had a gamma knife follow up brain MRI.  Brain lesions that were treated are shrinking.  They did identify a 1-2 mm tiny spot on the opposite side which they are choosing to just monitor.

The scans showed improvement in the liver, lungs, spleen, and sub-q's, with the exception of one node in his right axillary which increased slightly.  The liver actually seen an 80% overall reduction in mets, with many not seen anymore.  Same with the spleen.  The down side is that they do see a new lesion in his hip bone/pelvic area.  He also had lesions in his spine, but those appear to be responding to the chemo.  He is having severe pain in his right hand which they believe is due to one of the tumors either in his axillary area or his spine pressing on a nerve.  Pain meds (methadone, oxy, gabapantin, dilaudid) aren't helping, so he is going to start radiation next Monday to the lower spine and armpit to see if it relieves the pain.  His LDH has gone from 8000 when he was in the hospital to 698 - which is just outside the upper limits of normal. 

Given that we KNOW the carbo/taxol is working, he is going to do two more rounds, and then restage.  He could switch to IPI then, or see if he qualifies for one of the anti-pd1 trials. 

All in all, we'll take it!!

Best wishes to all of you,

 

Maria

Don't ever, EVER, give up!

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pfloyd's picture
Replies 9
Last reply 6/17/2012 - 10:10pm

I was diagnosed with stage 4 melanoma of the lung via CT scan/biopsy and PET scan in January ... very small tumor (1 cm) ... used VATS surgery to remove "wedge" of my left lung in February ... had a followup CT/PET scans in May the melanoma had spread to the leura of my left lung, lower left quadrant of my abdomen and in my liver ... I had been on Leukine (self injections ... 14 days of shots/14 days recovery) since the surgery (56 shots/4 rounds later the cancer had matastisized to the other locations listed above ... my oncology team at the James OSU Medical Ctr in Columbus took me off of the Leukine and started me on Zelboraf with my first dosages began 6/4/12 ... the first week was rather uneventful other than fatigue, week 2 has had the onset of major joint pain wrists , muscle pain throughtout my body and the fatigue continueing ... and the beat goes on ...

(my saga started in Oct. 2010, excission of melanoma on inner calf of my left leg, lymph nodes removed in my groin ... received immuno therapy Interferon - the most difficult chemo I have had - tore my body down as low as it could get for 2 months ... when I did the Leukine I told my oncologist the Leukine was like taking candy compared to the Interferon immuno therapy LOL) - neither how ever was successful in building my immune system to fight off the cancer ...)

Michael

" never be satisfied" ... "- I hate to lose ... having melanoma has me treating each "issue" that arises as a battle - a battle to be fought and won ...

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I hope this will help others. My dad was diagnosed with melanoma 6 years ago. Stage 4 3 years ago. Multiple surgeries...biggest was the lung 3 years ago. it was removed...very painful for my dad but he's a fighter.  It hit the nervous system 8 months ago, PET scan showed it along the spinal column and in the fluid around his brain. Sorry for the lack of specifiics...I am not a doctor.  the dcotors gave him 2 months. From what I know Zelboraf isn't supposed to cross hte blood brain barrier, but he tried it anyway. He had radiation around the head followed by taking the Zelboraf. Next scan showed the cancer had practically disapeared. Doctors were amazed. Side effect were bad, he had every one on the package insert. Just as he was about to stop the Zelboraf becuase the side effect were too much it quit working...symptoms were back. Confusion, headace, backace, etc. He's now on steroids to relieve the swelling in the brain and under hospice care. It's a great drug, bought time...maybe enough for him to see my son born. Worth the side effects? I don't know, only the person who has to do it can decide. I'll try to answer questions anyone has if you post or email me mcarter12345@hotmail.com.

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MaryEllen's picture
Replies 1
Last reply 6/17/2012 - 6:02pm
Replies by: Eileen L

 Hi everyone,

I haven't posted since being diagnosed with Stage IIIC in 2009 - now Stage IV. Currently, I have a positive inginual lymph node and multiple small lung nodules (about 5 - largest 6mm). I have acral lentiginous melanoma. Quick recap: Removal of 3.6 Breslow primary on L heel, positive sentinel node biopsy (no full groin dissection), heel reconstruction 2010, multiple in-transits treated with Oncovex (all gone), inginual node injected with Oncovex (biopsied during Oncovex trial as negative, now biopsied as positive), and now multiple small nodules in both lungs (about 5 of them - largest 6mm). I am BRAF, CKIT negative but am NRAS positive.

My complication in treating my one inginual node and lung nodules is that I have had multiple sclerosis for 23 years - an autoimmmune disease. My symptoms are extremely mild and far between. I am excluded from IPI and anti-PD1 trials because of the MS. I am being treated at MSKCC in NYC. My doctor and I are considering  IL-2 at Johns Hopkins next month. Of course, IL-2 carries a risk of making auto-immune disease worse too.

My questions - (1) Are there any promising later stage trials that take advantage of the NRAS mutation; (2) Is there any "wiggle-room" getting into a anti-pd1 trial with a very mild form of autoimmune disease (my neurologist would go to bat for me) and (3) does anyone have any experience with IL-2 and an autoimmune disease.

If anyone has any thoughts, I would be most appreciative.

Thanks, MaryEllen

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Was wondering if anyone else has experienced bumps in throat (like maybe squamous cell tumor).  I have been on Zelboraf for 5 weeks and had some really hard side effects.  Noticed a few days ago a bump on my uvula (spellcheck).  I have a checkup appt. with oncology on this Thursday.  I have had a lot of warts or bumps pop up on my face, back, and arms just within the last couple of weeks, also.  Right now according to the last MRI I had, there is no cancer in the brain and the PET/CT showed minimal node involvement near my left armpit. 

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Was wondering if anyone else has experienced bumps in throat (like maybe squamous cell tumor).  I have been on Zelboraf for 5 weeks and had some really hard side effects.  Noticed a few days ago a bump on my uvula (spellcheck).  I have a checkup appt. with oncology on this Thursday.  I have had a lot of warts or bumps pop up on my face, back, and arms just within the last couple of weeks, also.  Right now according to the last MRI I had, there is no cancer in the brain and the PET/CT showed minimal node involvement near my left armpit. 

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Anonymous's picture
Replies 3
Last reply 6/17/2012 - 2:51pm
Replies by: bcl, mantonucci, Charlie S

Hello, 

I'm a reporter working on a story about a recent congressional report suggesting tanning salons regularly give misinformation to would-be customers, particularly young women. I am posting in hopes of connecting with anyone here who took part in indoor tanning in the past and can tell me about their experience. Please feel free to contact me here or off list at bridget.huber [at] fairwarning.org. Thanks in advance for your help! -- Bridget

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