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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deardad's picture
Replies 13
Last reply 6/23/2012 - 11:25pm

Hi does any one know of trials in Australia for patients with brain mets?

I'm guessing that's a long shot...

Thanks in advance 
Nahmi from Melbourne

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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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Cindy33's picture
Replies 9
Last reply 6/20/2012 - 12:41pm
Replies by: Janner, Cindy33, ALM, Fen, Gene_S

Hello All,

Thank everyone for posting. I am finding comfort here and realizing I am not alone. I have had 2 primary melanomas and one severely atypical. One SNB, 3 WLE and am scheduled for one more WLE this week. None of my moles looked suspicious to the docs and they have been shocked when they come back melanoma/atypical. I currently am waiting to get stitches removed from MIS and will also have WLE on the same day. Waiting for results on several other biopsies, and have identified one suspicious changing mole and three new ones!  I am sick of being cut on and stitched up but grateful for the chance to catch these moles early.  I have had so many biospies I have lost count.

I am interested in mole mapping, but don't know much about it. I know OHSU does it, but do not believe insurance covers it. I see that I can order a software mole mapping program. Has anyone used that?  I am worried about what this means for my children and grandchildren. I am on a roller coaster of fear and panic. I am stage 1, but thinking that at some point, sheer numbers of problem moles might change that. 

Anyone with tips regarding mole mapping? Also, how do I know my dermatologist is acutally a melanoma specialist? I am in the Pacific Northwest, about 1 hour from Portland. I am considering going to Fred Hutchinson Cancer Center in Seattle or Angels. Overkill? (pun intended) I like my derm and PA, just want to make sure I am doing what I need to do to take care of myself. 

Thank you and God bless you all. 

Cindy

Ring the bells that still can ring.

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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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catmandu's picture
Replies 4
Last reply 6/19/2012 - 11:20am
Replies by: catmandu, Gene_S, Janner, Anonymous

help!  i have been diagnosed with recurring melanoma in my groin area.  it has been removed.  i am going to md anderson in houston soon after they call me with an appointment.  my doctor told me it would cost me 90,000.00.  i have insurance but it only pays 70%.  maybe there is a clinical trial.  i just want to give up.  i am 62 and not on medicare yet.  what can i do?

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alabama girl's picture
Replies 8
Last reply 6/19/2012 - 9:52pm

I was just wondering how those of you that are IIIB stage are doing. I was diagnosed at that stage in Nov, 2011. I  also had breast cancer 3 months ago which is right above the chest wall where my melanoma was. I raised money and walked in the Relay for Life and I guess it made me very down and wondering what survival rates were for us. My next CT scan is in July and you know, not looking forward to it. I am normally pretty upbeat. I guess seeing all those who have died from cancer just makes you more aware of it all and brings it to mind. I usually try to just live one day at a time and enjoy life.

Thanks for any input and encouragement! .

Alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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ACTION! Help Save the Life of Darcy Doherty, Father of Three Children to get immunotherapy drug Anti-PD-1 (BMS-936558)  for melanoma .

A Cry for HELP!!!

Please write to Dr. Elliot Sigal at Bristol Myer Squib

Elliott.Sigal@bms.com

Dr. Sigal is the Director of Research at BMS.

Please send a note to Dr. Sigal requesting that BMS open compassionate use for Mr. Doherty. I know it is a long shot/ Hail Mary Pass but, base on my research, this drug with the combination of IL-2 may be able to beat the odds.

Bristol Myer Squib says "At Bristol-Myers Squibb, we are firmly focused on our Mission to discover, develop and deliver innovative medicines that help patients prevail over serious diseases."

Is this all lip service? Let see if BMS puts their money where their mouth is and grant this compassionate care use for this derserving family. Doherty with his clinal trial of Yervoy (Anti-CTLA-4 therapy) helped get the drug FDA approved through his survival data. The least Bristol could do is to grant the dying man compassionate use of the next generation drug called Anti-PD-1, (BMS-936558)

Bristol Myer Squib needs to show some compassion.

It is their ETHICAL Responsibility.

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~

 Take Care,

Jimmy B

 

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ALM's picture
Replies 7
Last reply 8/21/2012 - 11:38pm

Hi Everyone

From what I have read my melanoma (Acral Lentiginous Melanoma) is fairly rare (more so since I am caucasian).  Is there anyone out there who has the same disease and can offer me any info? I am stage 4. The primary liesion was on the middle toe which was amputated. A year later another liesion appeared on the ankle which was surgically excluded. I would like to know if ALM is any more dangerous or aggressive than other types of melanoma or are all melanoma basically the same?

Thanks for any help 

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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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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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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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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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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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