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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Julie in SoCal's picture
Replies 1
Last reply 9/28/2016 - 9:37pm
Replies by: debwray

I tried to post, but it said I was blocked. So am I blocked?

julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/28/2016 - 9:34pm
Replies by: debwray

I've been NED for 8 years. Still see derm every 4 months. My last visit I had 5 shaved (never doing that again). Never had it done before, it was my first visit with my new Derm lesson learned.
OK but three came back dysplastic, no surprise, a lot of mine are. But here is the thing, I asked for my path results to have for my records and noticed she had further testing done and two were follically positive for Melan-A.
Should I be waiting 3 months to have checked again? Or is this something to be a little more worried about?
Thanks for any advice!

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Jenine's picture
Replies 2
Last reply 9/28/2016 - 9:01pm
Replies by: beans920, Bubbles

Hello all,

My husband was diagnosed with stage IIIC Melanoma two years ago.    He underwent immunotherapy including the maintenance program.    He had a CAT scan in June which showed nothing even though he felt pain in the center of his chest. Three months later he had a PET scan which resulted in a tumor in  his lymph node and sternum. Has anyone else experienced  something similar?   Maybe I'm naïve but I wasn't expecting a reoccurrence somehow.   So worried.  I'm trying to figure things out and be  strong for my husband and children.   Any input or suggestions for treatment you may have would be appreciated.

Wishing everyone strength and good health.

Thank you,

Jenine

 

 

 

 

 

 

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Replies by: slh4448

Hi all,

This may be a long shot, but I am wondering if any of you can recommend a good dermatologist in the Kansas City area. 

I have not had melanoma, but have had several dysplstic moles removed and have an immediate family member who had melanoma.  I know my risk is high, so I am looking for a reliable dermatologist.

Do any of you have an experience with university hospitals? Pros/cons? 

Or any websites where I could find reviews? I am having trouble finding much information right now.

 

 

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beans920's picture
Replies 3
Last reply 9/28/2016 - 8:47pm
Replies by: beans920, Polymath, Fen

Hello to everyone,  I have been a poster in the past  but have not had much to say as I awaited my quarterly scans.

Finally had my Pet scan, MRI and blood work on Wed.  I have had 2 wks. of radiation  and was started on Pembro now receiving my 6th dose.  Blood work was all in normal range. Full  Pet scan only showed the tumor on my sternum which has shrunk by 60%.  I figured it was down as I couldn't feel it anymore.  I did have a speck  show on the MRI on my left front brain area.  Dr. not sure if its new as I have not had MRI before always full body Pet scan.  Pet scan showed nothing active in brain area.  Will repeat MRI in six weeks during my 8th dose of Pembro.  No side effects yet, feeling good.  Prayers and Best wishes to everyone out there.   Beans

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Replies by: debwray

After several consultations, and in the interest of time, it looks like my mother will have her anal melanoma mass and inguinal lymph node resection removed by a three surgeon team at Kaiser.  These surgeons are part of the melanoma clinic in Riverside and believe in a more aggressive approach.  It also turns out that the Chief of Surgery at Riverside is currently battling melanoma as well and is therefore very supportive of melanoma treatment.

The surgeon examined her today and told us that since her mass is higher in the anal canal than previously thought, they can possibly remove it locally instead of performing the full APR resection.  Since APR doesn't significantly extend a patient's life, he said that it would be our decision.  However, this would leave behind a suspicious mesorectal lymph node.  She is frightened about the APR resection, and we don't want to put her through it if it significantly decreases her quality of life.  On the other hand, even a remote chance is something to consider.  Leaving a suspicious mesorectal lymph node behind is like a bomb waiting to explode. 

I wrote to Dr. Ribas at UCLA and he told me that in cases where the disease hasn't spread beyond the pelvis, aggressive resection is the way to go.  Has anyone faced a similar decision?

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Anonymous's picture
Replies 4
Last reply 9/28/2016 - 12:55pm
Replies by: Anonymous, Patina, Bubbles, Ed Williams

Hey guys,

my subject is self explanatory, so please, does anyone know?

thanks in advance!

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Ginger8888's picture
Replies 23
Last reply 9/28/2016 - 9:13am

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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Anonymous's picture
Anonymous
Replies 0

protease enzyme catabolizes proteins by hydrolysis of peptide bonds. Protease, from Aspergillus oryzae, contains both endoprotease and exopeptidase activities.

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jazztubs's picture
Replies 2
Last reply 9/27/2016 - 11:09pm

Greetings All,

I'm looking to connect/hear from anyone who might have had a similar journey to the one I'm currently on.

It's been a wild 3 years, to say the least.  Here is the short story:

-Diagnosed over 3 years ago, with a large bleeding mole on my head

-Resected this area, with local wide excision

-Multiple lymph node disections, and the paratid gland removed

-1 year of high-dose interferon

-Developed Lung Mets: Did 6 cycles of high-dose IL-2 under Dr. Brendon Curti (highly recommend)

-All Lung Mets either disappeared or stopped growing--1 year later, no issues in the Lungs

-Rewind a bit...December of 2015, had a seizure. Found 2 Brain Mets. Treated with Gamma Knife. All good, until this spring, when one continued to swell/grow, etc. Had a Craniotomy to remove it. Was paralyzed on my left side, but with therapy and with the swelling going down, got around 95% of function back. Excellent Surgeon: Dr. David Adler.  

-Since the surgery, I have had a few small seizures.  I'm about to have my 3 month MRI to examine the brain. Currently just taking anti-seizure meds, and not doing any other therapy

-I've experimented with cannabis treatments as well, including high-dose Rick Simpson Oil--and while I'm not certain this has helped with acute issues, it has certainly helped with maintaining healthy body weight and overall positive disposition and dealing with depression.

OK...So, fast forward to today.  I'm not going to lie and say I'm not affraid about what lies ahead: I'm very affraid.  So far, I've taken each day at a time, and have been super positive in my disposition--it's all I have left.  Recently, I've had to stop driving, riding motorcycles, and doing many of the other things that give me a sense of freedom and enjoyment.

Knowing that the IL-2 doesn't work over the Brain/Blood Barrier, I worry each day about what the future holds.  Is it more Brain Surgery? Is it sudden death due to a seizure? etc. etc. I know darn well no one can answer that, but I wanted to hear from others that might have had a successful IL-2 run, and then hit a wall with the Brain Mets...  In short, is there any hope for life after Brain Mets?

 

-Ben

Benjamin

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snow white's picture
Replies 14
Last reply 9/27/2016 - 9:29pm

Dad was all ready to start radiation tomorrow.  He met with Doctor Kim Margolin, specialist and only treats melanoma at City of Hope in Duarte, CA.  She had a whole diffrent opinion on this.  Saying that the mets that he has have been around for a long time.  She also said that the radiation would not "work" well for his brain mets and that they have to get him on a diffrent program ASAP.  So far I haven't been able to get the drug names.  She said one of the side effects is Colitis.  She said the drugs are either going to work really well or not, everyone responds diffrently.  She also stated that Dad should NOT be driving due to possible seizures, NO other doc has told him this???

Its all so confusing!!!!  I don't know what to think.

 

Anyone have any insight?

 

Jennifer

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snow white's picture
Replies 8
Last reply 9/27/2016 - 6:04pm

So Dad is going to City of Hope tomorrow.  But, I don't know if its with a Melanoma Specialist.  Can anyone recommend an excellent doc in the LA area?

Much Appreciated!!!!!

Jennifer

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/27/2016 - 1:29pm
Replies by: Anonymous, debwray

Hi everyone,

I'm brand new to posting but have been lurking for a couple of months. I have a LOT of moles so have been monitoring them fairly closely for a number of years and have been on a 6-month skin check schedule with my derm for the last 3 or 4 years. I have had several moles removed in the last 10 years that were in various stages of dysplasia. I had a mole removed from my upper back in May of this year that came back melanoma in situ. In a lot of ways I was not shocked because my father died of cancer (not melanoma) and my mom died from a retinal melanoma that metastesized to her liver and other organs so I certainly had the family history. The mel was removed and then I noticed a dark mole on my left cheek that was not very big but that I had not noticed in previous months and it looked really strange (in a bad way) so just had it biopsied earlier this month and it also came back as MIS and will get it excised in a couple of weeks. I had just kind of come to terms with the first MIS and was really taken aback with this second one because I didn't expect to have another mel in such a short time period. I have felt anxious, depressed, sad, but grateful and know I am very, very lucky to have caught both of these in the early stages. But it has really rocked my world and left me depressed and not knowing what the future holds for me. I look at all the moles I have and think they ALL look questionable at this point as I am super-scrutinizing everything. I know that is unreasonable and I think it is just a stage that I need to get through. I have an appointment with my derm next week just to sit down and discuss my situation to answer my questions and see if there is anything else I could be doing (other than the obvious and important things of staying out of the sun, wearing sunscreen and long sleeves, etc.)

I guess I just wanted to "unload" all my feelings on the boards and most of all wanted to say thanks to everyone for posting all the great information and stories about what they are going through. I am trying foremost to educate myself about mel and be super vigilant on my monthly skin checks. I had my husband take a lot of photos of my body so I can compare against them every month. I have a lot of moles on my back, which are a lot more difficult for me to monitor and I get very anxious about those especially having this 2nd mel. Thanks for letting me tell my story and to vent my feelings and emotions and thanks for all the communal support each and every one of you provide! I have found it so helpful.

Gail

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mom3girlsFL's picture
Replies 3
Last reply 9/27/2016 - 1:25pm
Replies by: Yvette, debwray, Patrisa

Hi All,

Just wanted to post real quick recent scans show NED!!! After being on (sometimes off) various doses of tafinlar mekinist combo I am mel free! Wow, can't even believe it! 

Have been on almost a year so i was honestly not expecting the good news.  Even the last lingering 2mm lung nodule has disappeared.  Oncology appointment tomorrow. Not sure where we go from here...any thoughts?  Will i be on meds indefinitely?

Ugh, just trying to enjoy the news and clearing "thoughts" from my head!

Laurie

2002 stage 1

2010 stage 3 - radical groin dissection

2015 stage 4 - lung, retroperinoteal/para aortic - Taf/Mek combo

Do not fear tomorrow, God is already there.

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Julie in SoCal's picture
Replies 15
Last reply 9/27/2016 - 1:02am

Greetings Friends,

Yesterday I saw the Rock Star and did the "paper work" and body work (blood, ekg, and pee in a cup) to join INCB 39110-17.  I'll have to have scans again but provided lung tumor is still there (short of a miracle, there's no reason it wouldn't be) I'll start Day 1 Cycle 1 next Wed- Phew!  Maybe this roller coaster ride is coming to a full and complete stop or at least maybe slow down a little.

I don't know if I'm on the JAC1 or PI3-k arm, but either way I'll get it a drug with Pembo and I've responded Pembro well in the past. So I'm hopeful.

Meanwhile I'm tired.  All the hurry up and wait has been stressful.  Not knowing what the plan is has taken a toll. I'm very glad to have a plan.

Thanks again for being fellow companions on this wild ride.

Shalom,

Julie

 

 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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