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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tony9511's picture
Replies 6
Last reply 3/25/2013 - 8:31pm

Hi I was first dxed with Melanoma stage 2 clark IV last march and had the WLE surgery in May 2012.  My lymph node that was discected was near the neck area.  In Feb 2013 the Melanoma returned.  I just had the surgery.  The Pet scan was negative, although the Melanoma showed that it was draining to another lymph node near my armpit as well as the neck (same node as before).  I still have not got the pathology reports back from the lymph nodes from this recent surgery.  My question is 1. is it bad to have melanoma recurrance, and 2.  is draining to a second lymph node bad as well.  God bless all that are affected by this disease and I would appreciate any feedback.  The melanoma was on my arm.

 

Tony

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Moodypoodle's picture
Replies 4
Last reply 3/24/2013 - 9:32pm

 

On Friday I got the results of my first post-Yervoy PET/CT scan (also results of brain MRI done the same day).  By the way I’m happy to say I was able to tolerate all 4 doses with minimum side effects. The good news is that the scans show no evidence of disease in the previously involved areas (liver, lungs and abdomen).  YEA Yervoy!!  Looks like I am a responder—woohoo!

However, the brain MRI shows a teeny spot of disease that wasn’t there in January when I had a problem with my pituitary.  The way I understand it, that teeny spot is what we can see.  There may be others we can’t see at this point.  Doing nothing is not a good option!  Next stop: radiation.  My retinue of docs now includes a radiation oncologist and a neurosurgeon.  All that training yet I’m the one who’s stuck with the decision. Sigh. I can go with whole brain radiation and not leave anything to chance OR do cyberknife and zap what is showing.  I am leaning in the direction of the cyberknife initially and then at the first hint of another spot, doing the whole brain thing. What have others done in similar circumstances?  What would you do??

Ann

Every Second Counts!

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bluevit's picture
Replies 7
Last reply 9/21/2014 - 7:32pm
Replies by: bluevit, Pamelarun, Janner, Anonymous

Hello,

I have a biopsy scheduled in 2 days of my thumb nail.

Is there anyone that has experience with subungual melanoma, or Acral Lentiginous Melanoma?

Please see this picture of my thumb.

http://nz.skyflux.com/IMG_2416.JPG

This is after watching it grow out from the cuticle for 2 weeks.

What kind if biopsy will I get? (punch biopsy?) and where exactly is the best place for them to take it? What kind of accuracy should I expect from the biopsy?

I am scared and trying to get a diagnosis asap because I have had other rare health problems over the past year that a heap of blood tests was unable to figure out other than probable psoriasis and food allergies. I was 99% back to normal curing myself through a healthy diet, but now this!!! As you can see my thumb nails used to grow out split back when my skin was leaking lymphocytes and falling off all over my body. All my other finger and toe nails are growing out perfect now except this one.

Thank You

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MaryD's picture
Replies 6
Last reply 3/25/2013 - 12:37am

I want to share some news that I hope will encourage all of you who are battling this difficult disease.   I was diagnosed 12 years ago with melanoma, had 5 recurrences including a lung metastatis in 2007, did 1 yr INF, peptide vaccine trial, radiation, Ipi trial, and 6 mos of pulsed IL-2 treatements.

Last Wednesday I had my 6 month scan which revealed all is clear - 4 1/2 years since the last recurrence!    I am now on the countdown to strive for that 5 year milestone in September.

I thank God every day for this gift and will never take it for granted.      This is a difficult journey to be sure, but know that there is hope, and there are many of us stage IV survivors out there thanks to those who devote their lives to research and finding better treatments.

I also have to thank the MPIP for playing a huge part in helping me learn so much about this disease and bringing amazing, courageous people into my life.

Wishing all of you strength .  .and hope . .in your battle

Mary

 

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SteveT's picture
Replies 14
Last reply 4/5/2013 - 3:46pm

Hello,

Just got back home from Chapel Hill after a WLE and neck dissection. Post-op pathology reports showed some activity atop my head at the primary tumor site (pushing me to 3c) and no sign of spreading beyond 3 lymph nodes (out of 21 removed) in my neck. I have a follow up on Tuesday when I will also meet with a radiologist.

Apart from some stiffness, I feel great. I just got back from a long walk to the grocery store. 

How necesary is radiation? The docs want it and they haven't failed me. What is the liklihood that all the cancer was removed? Can someone point me at a study showing definitive benefits of radiation in my circumstances? How much fatigue is involved? Side effects? Has anyone opted out of all post-op treatment in favor of watch and wait and diet and exercise? Has anyone regretted getting radiation?

Thanks for all the support while I was in the hospital.  Steve

Make today count

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MarieM's picture
Replies 6
Last reply 3/25/2013 - 7:58am
Replies by: mike_nj, dian in spokane, Anonymous, King, Hstevens0072, vivian

I just got a call from Dian!

It was soooo good to hear her voice. She sounds GREAT!!!! She is having some computer problems but finished 13 of 14 bags of IL2. She is having some side effects...but managing them like the trooper she is! Her Bob and friends have been by her side.

 

She is hoping to be discharged either tomorrow or Sunday.

 

She is truly, AMAZING!

 

Hugs, Marie

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_Paul_'s picture
Replies 1
Last reply 3/22/2013 - 7:19pm
Replies by: washoegal

I just got the call from my derm that what presented as a small blue nevus in my excision site is likely a recurrence. Apparently the pathologist could not say for sure that is was melanoma, but there are enough characteristics coupled with my history that his official report is that it is a recurrance. I am waiting to receive a copy of the actual report and a copy is on its way to my melanoma Dr. at SCCA in Seattle.

Will they likely want to do another excision? The tissue at the primary site is to thin I think they would have to graft. But a graft was not an option last time because the skull had been opened for so long that the blood supply died. Anybody been through anything similar?

 

Thanks - Paul.

To exist is beyond fantastic.

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A melanoma group in Canada is hosting a survey to gather data in advance of encouraging coverage of Dabrafenib.  If you have an interest in melanoma and live in Canada you may want to participate in the survey:

http://survey.constantcontact.com/survey/a07e74hy2tphdq1lhit/start

 

Tim--MRF

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Richard_K's picture
Replies 6
Last reply 3/23/2013 - 11:23am

 

At my last regular check-up on February 27th, my bilirubin was once again elevated and it was decided to retest in three weeks rather than the normal six.  The nurses also suggested that lack of proper hydration could be a contributing factor.  I decided to make a chart for myself where I would be able to keep track of my fluid intake.

Good news yesterday after the three week retest with a telephone call that my bilirubin had returned to normal.  A side benefit was that my creatinine was also greatly reduced.  Proper hydration is now my new best friend.

The day before this call I got another good telephone call, although it was not so good for my wife, she would be losing her night light.  Since I am still in the Zelboraf phase II clinical trial, the protocol called for scans every six weeks.  My doctor was finally able to get permission to get that changed to every twelve weeks; I won’t be glowing as much anymore!

Dick

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Jewel's picture
Replies 7
Last reply 3/24/2013 - 9:54pm

Hello,

 

When my husband was diagnosed back in 2010 things looked and felt so final. My husband goes for his

scans this Monday, if they are NED we have been blessed with 18 months clear from last recurrance.

With all the advances they have made in the last couple of years it seems now that the normal protocal seems

to be Zelboraf, Yervoy and then Anti-Pd1 in that order. With all the advances would you still try to push for a

clinincal trial? Just trying to get a plan A, B + C. My husband is stage 3C. I know this question is asked endlessly

but I also know that there are alot of people who do ALOT of research.

 

Would love to hear some opinions....Thank-you

 

Jewel

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randallgford's picture
Replies 2
Last reply 3/23/2013 - 11:16am
Replies by: randallgford, Janet Lee

Randall started Yervoy two weeks ago after lung biopsy, CT and PET scan showed tumors on lungs,

abdomen, two small ones on liver, and spine. Brain MRI was inconclusive, decided to do a double contrast

MRI. Well the result is 5 apparent lesions, we are doing cyberknife by next week if another MRI can be 

scheduled, then a day to plan it (?) I got the impression from reading on this board they mainly do cyberknife

for brain. Why not for lungs/spine etc.? Just curious. I guess its more wait and see, some respond, some don't.

I am having a hard time with what to tell my daughter she is 20, across the state, a junior in college and doing

great with grades, a job, and an internship. Very busy and focused. We went there and told her about the cancer returning,

but at that point we only knew it was in the lung (after the biopsy) and we pretty much assured her he would get

get treatment and beat it. I feel like Im not being truthful, she is coming home next weekend for Easter and I have

to figure out what if anything, else to say. Randall doesnt want to stress her out. He still feels decent and goes to work.

Mostly I try to think positive, but this is serious  especially with the brain involvement.

Never give up!

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SDC_Bolts's picture
Replies 9
Last reply 4/6/2013 - 9:56am

Brief overview of our story.

My wife (33 years old) and a mother of two, was diagnosed with melanoma in April of 2010.  The melanoma was in her groin area, a area not exposed to the sun, and she is not a tanning bed person.  Had surgery on April 30th, 2010, to remove tumor in left groin, superficial lymph node dissections left groin, 2/3 sentinel were positive for melanoma, 29 lymph nodes removed from groin area at that time.  Started Luekine injections for one year.

Feb 21 2012, reoccurrence in left groin, surface melanoma removed along with smaller tumor underneath it.

April 2010, blockage in pancreas causing issues, whipple procedure done to remove blockage and resumed luekine injections.

July 2012, another melanoma removed. Continuing injections.

October 31st 2012, stomach/back issues, found tumor in bile duct of liver, stint put in place to allow bilirubin to pass, moved on to ZELBORAF (vemurafenib). At this time tumors were in abdomen area as well. Started ZELBORAF on Nov. 9th.

PET scan 3rd of January 2013 were great, almost all cancer was gone.

Late January of 2013, tumors grew throughout abdomen and liver. Started 3 drug chemo therapy treatment January 26th. Drugs were Avastin, Abraxane, and Carboplatin. 

While on chemo, my wife was doing pretty well.  Then she had severe pain in her back, after further review found out she had two stones (we knew these were present before) both drop to her ureters, one on each side. She went through 3 or so weeks of hell, getting temporary stints due to bacteria around the stones, then a week later getting those taken out, stones removed, and then temporary stints back in place to be removed a few days later.  Once these were removed, she was still in severe pain intermittently, which we thought was due to the stints.  Finally after a week of this we went back to the hospital to get another CT, which then showed that more tumors had grown and were around her kidneys and lower intestine area.

At this time she had just done a chemo treatment so we had to wait awhile before the next treatment stage.  We just started YERVOY yesterday.  As I understand it this is a great drug but slow acting, this is why the Dr's didn't want to try it earlier, they wanted to get a jump on the cancer before going to this drug. 

At this time, there really are no other options being presented to us, I do have confidence in the place we are being treated, but wanted to know if anyone had any other experiences that they would care to share, or options they can think of.  We are willing to travel for further treatment, as of now we go to Mayo Clinic in Rochester MN, which in our area is the best around us from what I understand.

Thank you for your time reading our story and hopefully some valuable input.

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Kudos to the MRF for last weekend's volunteer summit in DC. The sessions were lively, informative and well targeted. It was an emotionally charged weekend listening to many people's stories. I came away with renewed hope and fully energized to continue spreading the word about melanoma. If you missed this event, please consider registering for MRF's Legislative Day on the Hill on May 14 in DC. You can get the details about it and all MRF volunteer opportunities on their homepage, www.melanoma.org. I finally feel like I have started to fulfill the promise I made to myself when I survived longer than expected and it feels really good. Please know I keep everyone dealing with melanoma close to my heart and always in my thoughts. Keep fighting the beast!

I have melanoma but melanoma does not have me!

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My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

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My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

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