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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GAngel's picture
Replies 8
Last reply 12/5/2013 - 10:21am

We had so much to be thankful for this Thanksgiving having just learned the great news days before the holiday that the results of Rudy's most recent scans revealed no evidence of disease! For those that do not know his story, he was diagnosed in late February 2013 with Nodular Malignant Melanoma - Stage IV with 15+ mets in his liver and his left groin lymph node.  After testing positive for BRAF he was started on Zel in late March of 2013 and had a great result as far as tumor shrinkage, however, he suffered many grade 4 side effects.  In July 2013, he started on the Dabrafenib/MEK combo, which he has tolerated much better and he has now reached NED!  We are so thankful for this blessing! I am always mindful of the fact that for most patients this treatment will not provide a durable response and the beast will eventually find a way around it, however, we are so grateful and celebrating God's blessings and focusing on the positive and not what may happen.

PDL is coming to UCI where Rudy's oncologist will be heading the trials next month; however, his NED status will not permit him to be a participant.  Therefore, I am hopeful that if his status does change that he will then be able to participate but we will cross that bridge when and if we get to it! 

For all of you still battling the beast and for your loved ones fighting along with you, you have been in my thoughts and prayers every day.  May the Lord be your strength and comfort along this very hard road and may you know that you are not alone and you are loved! God bless you all! 

Yours truly,

Gina 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Eileen L's picture
Replies 3
Last reply 12/5/2013 - 2:48am
Replies by: kylez, MaryD, POW

Hi, folks. I am an infrequent lurker/poster. Many of you have heard my story, but here is the brief summary.

Diagnosed Stage IV six years ago, on Sorefenib for 4.5 years, then a pesky tumor on my right adrenal gland grew to 6 cm. It was pressing on my inferior vena cava and was growing towards my renal arteries. NOT GOOD! Got into the Roche BRAF/MEK Phase Ib trial and have had great results. All tumors now non-reactive on PET scan (adrenal tumor had a SUV of 9 when we started) and the adrenal tumor down to 1.7cm. Only other remaining tumors are a few small lung nodules.

So, my oncologist, Dr. Daud at UCSF, and I decided to have that problematic little adrenal tumor taken out and he amazingly got the drug company ok to do so and leave me on trial. Scheduled for what we hope is laparoscopic surgery on Tuesday, and if all goes according to plan I will be back to baseline in one to two weeks. That way, when the BRAF/MEK combo stops working won't have that adrenal gland tumor to worry about.

That's my update. Hope everyone has a wonderful Thanksgiving/Chanukah!

With lots of love and gratitude,

Eileen from San Francisco!

 

 

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NYKaren's picture
Replies 3
Last reply 12/4/2013 - 9:42pm

Hi,

I am finishing a slow Decadron taper...was on 4 mg, went up to 8 mg. after MRI revealed new brain mets, .  After Gamma Knife, 3 weeks ago,  been tapering and now at 1 mg.  Supposed to go to 1/2 mg. for 5-7 days.

After work, I just go home, read in bed and go to sleep between 9-10:00.  Snooze alarm=best friend.

I've had leg pain throughout, but not like this.  Last couple of days, bi-lateral, tremendous pain from hip to toe.  Also, severe GERD, my fault for eating too late and not sleeping on enough pillows.

I'm already taking pain meds...now taking it all the time and even waking up during the night to take it. 

My question is:  If anyone has done a Steroid taper, will the leg pain stop when steroids stop?

I am weak, but not as weak as I was 2 years ago when stopping pred (colitis caused by Ipi)...went onto hydrocort. because of adrenal insufficiency and really don't remember--I just know that one flight of stairs is too much for me. 

Any help much appreciated.

Karen

Don't Stop Believing

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Anonymous's picture
Anonymous
Replies 9
Last reply 12/4/2013 - 4:19pm
Replies by: Anonymous, Janner, jloz, POW, sbrooks90

I am ok with my diagnosis, its pretty good. I am at a .80mm depth, 2 mitotic rate, and no ulcerations, so I was listed as Stage 1b. I am to have the margins removed later this month (hello paying deductible and copay the last month of a year! haha) BUT, what I dont understand is why my Dr gave me the choice of having a SLN biopsy done, or not....
 

I guess I am thankful for the choice, but what kind of choice is this? Do you do it and know for sure you are clear (told its an 8% or less chance its spread to the lymph nodes) or not do it because its a longer and more expensive procedure with more recovery?  (are they both outpatient - with and without the SLN ? I know without is...)

Then, what if I didnt do it and should have?

Am I even making any sense with this???? I think I am leaning towards having it done just to be safe, but..... UGH

 

Thoughts?

 

ps- I know there are people on here with way worse cases, but I just needed a place to vent where people understood what I am thinking. thanks

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Jasper's picture
Replies 5
Last reply 12/4/2013 - 5:52am

I'm having the worst anxiety I have ever experienced in my life! I had a "suspicious mole" removed week before last, turned out positive melanoma 1mm (that's all I know for pathology). The mole developed inside a birthmark was there over a year before I started noticing. Now the surgeon can't get me in for a consuot untill nexy Monday the 9th! I mean this thing is still there reproducing and possibly spreading shouldnt I be in surgery STAT? I am a nursing student, it's finals, I'm at my wits end, I'm convinced it's spread, I'm convinced I'll be dead soon and I can't get any answers :(
The doctor who removed the mole went on vacation for a month, just leaving me with this mess. I swear the biopsy site won't heal, it still hurts and is red and has been a week and a half! And It looks like the remaining birthmark is getting darker...and here I sit, hands tied.

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KSabo's picture
Replies 4
Last reply 12/4/2013 - 5:05am
Replies by: ncdaniel, POW, Anonymous, Janner

I had a wide excision where the Radiologist found 2 SLN but the surgeon left the SLN that is closest to the site in me - went for a second opinion and found out that the oncologist agreed with me the other SLN needed to come out but that he was concerned with the mitosis level and he is recommending a year of Interferon - anyone out there ever heard of this?

Karen

Karen Sabo

It is a diagnosis not a death sentence

Tempe, AZ

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Sherron's picture
Replies 13
Last reply 12/3/2013 - 9:12pm
Replies by: Cate, Maureen038, Swanee, POW, Sherron

Hi to everyone,

I do not post often anymore...But I still find myself here everyday.....Jim got his wings on Nov 30, 2010...nearly 3 years out.  I am still not doing real well.  It is hard to live alone.  Our anniversary would be Dec. 4th (45 years).  I am rather stuck...and can't seem to move on.  I live from day to day....work, sleep, to work, to sleep.  My daughter did get me a little dog this past April....She is small, and has helped a little.  Not sure how much longer I will work.  I probably need to go until 75 or so...I am 67 1/2...lost Jim at 64...I guess any age is too young to pass from this Beast.

Wishing you all the very best, and will be happy when I can quit coming to this site, and start living my life again.  I don't know how.  I don't know if anyone remembers me or not.

Take Care,

Sherron, wife to Jim (Forever & Always)

 

 

 

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SteveH230's picture
Replies 18
Last reply 12/3/2013 - 2:14pm

I am a long-time 'lurker' here and have posted a few times.  I wanted to let you all know how much I appreciate the knowledge, encouragement, and advice shared on this board.  

My sweet Heather passed away on Saturday, Nov. 9 at the young age of 33.  She was a beautiful redhead, we were married in July 2012, and she was given the stage IV diagnosis 6 weeks later.  She was most recently on the Merck PD-1 trial and scheduled to go in for her 12-week scans yesterday at Vanderbilt.  Obviously the treatment didn't work on her, and I just think she was too far along for it to help her very much.  Though she had met the inclusion criteria to get in, her little body was weak and just slowly gave out.  We didn't expect to lose her anytime soon, but I am comforted that I was holding her, at home, and she was not in pain.  

She had been in treatment since October 2012 and had mets in the abdomen, liver, spleen, bone, and brain.  The abdominal/pelvic tumors were causing a lot of pain and digestive problems, but we got the pain under control for her last couple of days with stronger meds.  I am so proud of her, she never complained or got angry with her situation, even while doing IL-2, IPI, SRS, carbo-taxol, whole brain radiation, and finally anti-PD-1.  She loved the Lord, and I'm comforted knowing that she has a new body in heaven and no longer suffering.  

A month before she passed, she helped raise over $22,000 for melanoma research and awareness.  She wanted to be healed so badly so she could devote her life to helping and encouraging others facing a grim diagnosis.  I think she had 600 people at her memorial service this week and equally as many at the visitation.  My heart goes out to all who are fighting this awful disease and their family & caregivers.  

Bless you all,

Steve

 

 

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Lisa - Aust's picture
Replies 15
Last reply 12/2/2013 - 3:44pm

Hi Guys,

Not sure if this has already been posted, but check it out and sign the petition if you like.

http://www.savelockysdad.com/

Cheers,

Lisa

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What do you guys use to heal from a mole removal? I had a stage 3 melanoma 2 years ago, and now my doctor removed a mole on my back. I heared neosporin isn't the best to use. What do you all recommend? Thanks!

 

Casie, melanoma survivor and co-owner of Wear Awareness

wear-awareness.com

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What do you guys use to heal from a mole removal? I had a stage 3 melanoma 2 years ago, and now my doctor removed a mole on my back. I heared neosporin isn't the best to use. What do you all recommend? Thanks!

 

Casie, melanoma survivor and co-owner of Wear Awareness

wear-awareness.com

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Mat's picture
Replies 5
Last reply 12/2/2013 - 2:40am
Replies by: GAngel, Aussielyn, BrianP, POW

Hi Everyone,

I'm grateful to report that I'm continuing to get great results from the GSK combo (my initial treatment since my Stage IV diagnosis in July).  I started in August 2013 with a heavy and aggressive tumor burden, particularly in my liver.  While I still have more than 15 tumors in my liver, they continue to reduce in size--approx. reduction of 70-75% since August (with remaining tumors under 4 x 4 cm).  (Prior to treatment my liver mets grew in size by 20% over 20 days).  Other tumors have either resolved (spleen, some small lung mets), remain stable (a few remaining small lung mets) or continue to shrink in size (small abdominal wall met).  I feel great.  Other than (valuable and educational) time spent reading this forum and related materials, I'm thankful that melanoma is presently occupying a relatively small part of my day-to-day life.  Of course, I haven't lost sight of the fact that this is a bridge treatment (at least for many patients) and, thanks to you, I continue to stay abreast of other treatment options.  Happy holidays.

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ktrlieb's picture
Replies 2
Last reply 12/1/2013 - 6:04pm
Replies by: ktrlieb, POW

Hello, MRF members and users, 

I had a biopsy of a mole on my ankle on 11/18, and it was diagnosed as a displastic nevi on 11/21. The doctor's office called me on that day to schedule surgery to remove the remaining mole on 11/26. I underwent the surgery on that day. I am concerned about the aggressiveness of the treatment. The doctor removed a significant area around the mole and sent it off to be analyzed. 

From my research, I haven't seen displastic nevi handled in such an aggressive manner. I go back on 12/8 to have the stitiches removed, so I can pose my questions to the doctor at that time, but does anyone have any suggestions as to what questions (other than the obvious, "Is it melanoma?") I should be asking? Are there stages to displastic nevi that warrant aggressive action and concern? I appreciate your suggestions and opinions, and I thank you all in advance for your attention to my question and concerns. 

ktrlieb

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