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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5374brian's picture
Replies 7
Last reply 4/18/2014 - 7:59am

It has been several months since i was last looking over the boards and posting comments. We were scheduled to start a PD1 trial July 11 but that had to be canceled due to Keri getting DVT in left leg at 1 am that morning. Since then she has had surgery for the DVT against several doctors suggestions, After the surgery she did have a rough time and we went into hospoice care. Hospice worked with us on pain management for a few weeks and we thought she was climbing back up the hill. A few weeks later she was having sever pain attacks in the abdomen area. We went back into hospice for 10 days and on the 8th day she woke up feeling fine with no pain and a appetite. We have been back home since working on eating little meals each day and keeping pain under control. Her pain now is controled by a PCA pump. Today was a big day for us. Keri came out of Hospice care for a 3 rd time since her diagnosed Stage 4 in Dec 2012 and will be returning to Moffitt Sept 26 to get scans, tests, and a plan of treatment. She has been a miracle to all of us. She said 1 week again if i am going i want to go fighting. She is not 100% but she has been through 3 surgeries and told she wouldnt make it several times. I say all this to everyone so you can know not to every give up. She has been determined since the beginning to fight and now we are back again. I feel so blessed to have her in my life and cant wait for the doctors plans on Thursday. 

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Jaryllane's picture
Replies 6
Last reply 11/18/2013 - 11:01am

I have been on the Lambrolizumab trial (MK3475) at The Angeles Clinic for four infusions now and had my first CT scan today.  My lungs, which previously had 5 small tumors, are clear; the tumors are gone!  This is such great news.  I hope the results are as good for others on this trial. 

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sharon0803's picture
Replies 9
Last reply 10/22/2013 - 6:45pm

Hi All,

 

My name is Sharon, I was diagnossed with stage 3a or  3b two years ago.  I opted out of the meds.  I have been doing my scans as directed..  I would like to ask of others - their experiences with findings from PET Scans... 

Jan 2013 - my PET Scan showed Abnormal hypermetabolic activity within the right hilum.  At that time, my doctor told me that based on the time of year this is not abnormal, perhaps a cold.  I figured maybe I had a cold and was not feeling it so strongly.

Sept 2013 - I had a pain near the lymph node dissection, to rule melanoma out, they did another PET.  Groin was clear, yet, it showed hypermetabolic adenopathy demonstrated.  It read "both lesions were present previously but activity is increased.  Overall size is stable.  Under IMPRESSION:  "increased activity within two lymph nodes.  Right hilum and mediastnum.  Metastatic disease likely.   

My docotor again, said, time of year is causing this.  I dont know if I buy it. The metastatic disease likely I find worrysome.   Has others had this experience?  Thanks for taking the time to read.

 

Sharon

 

 

 

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DonnaK's picture
Replies 9
Last reply 9/29/2013 - 2:07am
Replies by: NYKaren, DeniseK, GAngel, Mat, POW

I'm hoping to get some advice about a few issues that have been bothering me lately.  As you may have read in previous posts, my husband has a rapidly progressing melanoma w/ the main problem being innumerable brain mets.  He responded excellently to zelboraf but had a liver toxicity; while waiting for his liver to recover, his brain mets grew and forced him to have WBRT. He also had a single dose of Ipi but lost the ability to walk so we switched to Dabrafinib, since it seemed like he didn't have enough time to wait for Ipi to work.  He is doing okay on dabrafinib, though the improvement doesn't seem to be as impressive as it was with Zelboraf.  So here are my questions:

1.  John seems to do much better when he is also on decadron, due to brain swelling from the WBRT(?).  However, it is written all over the dabrafinib insert that decadron (dexamethasome) and dabranib interact with eachother.  Johns doc at SK is not the least bit concerned with the interaction. I don't know that there are really alternatives to the decadron, but I just want to make sure it's really okay to take both.  Does anyone have any insight from their own experience or doctors opinions?

2.  I've started to question the oncologist for next steps.  Given John's extensive disease, I'm nervous that this is our last chance to have real success.  I would like to consider combining dabrifinib with either ipi or the MEK inhibitor, but  hte doctor is dead set against both.  I understand her hesitation with ipi, but am confused by her reluctance to try dabraf+Mekinist.  She has said that the only other patients at SK on the combo have had severe toxicities.  Is that consistent with what everyoen else is saying? My understanding was that the combo actually lessened toxicities...

Thanks in advance! I'm trying to not overthink everything (as I'm known to do), but want to make sure that John is getting the best possible care. I felt that traveling to Sloan Kettering gave us the best shot, but now I'm having second thoughts... 

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MattF's picture
Replies 5
Last reply 9/25/2013 - 3:49pm

So i go for surgery tomorrow for the two masses (stage III) in neck. 

Pet / ct was good and surgeon has a 48 hour old MRI to get all the info she can. I will check in after a few days. 

 

Thanks

Matt

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john partrick michael murphy's picture
Replies 5
Last reply 9/26/2013 - 12:06pm
Replies by: Anonymous, Harry in Fair Oaks, Brendan, Mat, JerryfromFauq

Still doing well on the GSK BRAF/MEK combo trial at MGH. Year and a half without adverse affects. Tumors are 93% gone. Getting a few wild type melanomas but they get cut out in knife fights. I took my first dose on December 28,2010. I am so grateful.

The history of the world is the battle between superstition and intelligence.

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I'm me, not a statistic. Praying to not be one for years yet.

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aquamak's picture
Replies 4
Last reply 9/27/2013 - 9:41pm

I haven’t posted for a while but I wanted to update everyone.  This week is a tough one for me as I am scheduled for 6-month follow-up scans.  I have a brain MRI scheduled for Wednesday AM and a full-body PET scan scheduled for Friday AM.  I see my oncologist Friday afternoon for the results.  As most of us, I have has all kinds of aches and pains, especially after my total neck dissection and parotidectomy.  Of course, I am nervous and scared of the results.  The bright side is that after my MRI on Wednesday, I get my 1st dendritic cell vaccine on the clinical trial.  After that, I will get 4 more vaccines (in up to 10 locations on my body) with close clinical follow-up afterwards for side effects or reactions.  If the trial goes as planned, the dendritic cells will boost my immune system and potentially go after any rogue melanoma cells if they exist.  I’ll keep everyone posted.

Mela-No-More

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Private  messaging between POW and I via the profile contact route worked today.

I'm me, not a statistic. Praying to not be one for years yet.

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Junk1962's picture
Replies 6
Last reply 9/26/2013 - 8:23am

If  you read my past post my husband was diagnosed with Melanoma with an unknown primary Stage IIIc - IV back in June.  Though he is currently NED the size and depth of the tumor was extremely large (15mm?).  We opted to take part in a clinical trial at DFCI for Yervoy.  He got the 10mg dose. He had his first infusion about 2 1./2 weeks ago and had no side effects.  He was scheduled to go in for his second infusion next Tuesday.  Now, guess what - they cancelled his arm of the trial!  They had a few deaths in this arm of the study and decided against continuing this arm of the trial!  There are two other arms - a 3 mg yervoy and inteferon.  They will only allow the 10 mg to be transferred to the inteferon arm!  Doesn't seem fair to us but, that's the only option!  After only one dose of yervoy we are very confused on what to do!  It was such a hard decision to go with the 10mg yervoy and now we are back to square one!  Is it really worth doing the interferon at this point?  Any advise would be appreciated.

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Shelby - MRF's picture
Replies 4
Last reply 9/25/2013 - 7:19pm

Dear MPIP Community,

The reason for this post is two-fold. The first is to tell you about three upcoming educational symposia that the MRF will be co-sponsoring in the next few months. The first will be in Denver on October 26, 2013. The dates for the other locations (Pheonix and Miami) will be announced soon. We are participating in a pilot program where we will combine patient education with physician education. Both sessions will be led by expert medical oncologists. The patient session will highlight melanoma diagnosis, prevention and treatment information. At the same time a different oncologist will provide a presentation to healthcare providers, allowing them to earn continued medical education hours (CME). During the afternoon session, the patients and the healthcare providers will come come together and the content will focus on helping the two groups identify and overcome communication and other barriers to optimal care.

This leads me to the second reason for this post - a request for you to share with me some of the barriers to care that you've experienced. What are some communication barriers have you experienced with your healthcare team? What about other barriers to optimal care that you've experienced? For example, one communication barrier that we've heard a lot is, "My doctor said 'clinical trial' and all I heard was 'guinea pig'." Do you have others? 

This novel approach to combining patient and physician education is very exciting and we'd love to have your input. Thanks in advance for anything you have to offer! 

Sincerely,

Shelby - MRF 

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summergirl75's picture
Replies 6
Last reply 10/9/2014 - 3:03am
Replies by: summergirl75, JerryfromFauq, POW, Anonymous, Janner

I was diagnosed with Malignant Melanoma on Aug 21st/13.  I had a tiny mole on the inside of my thigh that I had never noticed before.  The doctor said it looked a bit suspicious but said I should not be concerned.  He took it out stating that it would give me peace of mind.  Imagine his and my shock when the results came back.  It was a clark level three, superficial spreading variant.  The tumor thickness was 0.65 mm.  No lymph vascular or perineural invasion was identified.  The pathological stage was pT1b, pNX, PMX (No idea what that means)...The margins were not clear...so I had the treatment below.  

 

My treatment:  I went to a dermatologist who found two basal cell tumors on my face which were removed by sort of a burning treatment...(no pathology report was possible).  A wide excision was performed on my leg and the pathology report came back clear.  Chest x ray clear, blood work clear.  

 

My questions:  I'm nervous that I should have had a pathology report on my basal cell tumors?  Please give me your opinions on this but don't scare me too much :)

Secondly, I have pain in my left chest and my left hip...I think this is because I had a baby two years ago and I believe that this is just aches and pains related to pregnancy, delivery, holding baby, breast feeding, etc etc...I am going to go to a chiropractor to see if im out of alignment.   Doctors ran a chest x ray which was clear and extensive blood work which all came back clear..  Should I be concerned that even though my pathology report said I am clear that I might not be...? Is there any advice considering the information provided above.  

 

Also, are there any links to good reliable natural prevention for this.  My oncologist does not believe that this was sun exposure related.  

Thanks in advance, I am just having some anxiety right now about the questions above...

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JoshF's picture
Replies 6
Last reply 9/24/2013 - 2:38pm

One thing I didn't mention was that BRAF tests came back negative. I'm not sure whether that's a good thing or bad thing. Can someone shed light on this? I know it excludes someone who is braf negative from many treatments but don't understand it much outside of that.

Let's work for better treatments....for a cure!!!!

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JoshF's picture
Replies 6
Last reply 9/25/2013 - 1:44am
Replies by: MattF, JoshF, POW, doro, DeniseK, SABKLYN

After hearing from many of you, I stopped feeling sorry for myself. Though it consumes much of my thought, I'm trying to keep a positive attitude and push forward. So I just wanted to update everyone as to what I've done in my fight.

 

Opted to have surgery at Northwestern Memorial. All of my files had already bent sent over electroincally except path reports from surgery last week. They also wanted path slides. I went grabbed everything and drove down to Northwestern. Surgical Oncologist came out and met me and said she would schedule me in for Wednesday.

So by time I got home she called and scheduled meetings with surgeons (surgical oncologist & plastics), has PET/CT lined up, Brain MRI...all on Wednesday!!!! Not sure if I'll get results because I see surgeons first...best she could with short notice. I'm not complaining. Now just need to deal with scanxiety!!!! I just had them at end of Feb...all clear!!! Guess some things never change...only difference is that I have melanoma again so more worried about spread!! Keep saying...please be local!!!!!! Also, pathology report was not good...in terms of how it was written. No miotic rate, surgery report said thinks it's a lymph node but path says nothing, nothing about margins though surgeon assured me he got everything  and now we look for metastatic disease (i.e. scans) and do another surgery for microscopic cells. This sound normal?

Anyway, I received call from medical oncologist who wanted to bring me up to speed on pathology, next steps etc... I informed her what I did and where I'm going for surgery and she applauded me for moving fast and said I picked great place to have surgery. I asked about pathology and how written...she said probably not lymph node. Of course I asked about distant metastasis given scans 6 months ago...of course she didn't say oh everything will be great...only that given the history and recent tests she wouldn't be suprosed if they were clear but docotors/oncologists don't go on speculative...need definitive.

So that's it....pray for clear scans.....and to get on with it!! Thanks everyone for being supportive. I've heard many of you say....you're your own best advocate!!!!

Wishing you all the best!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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DeniseK's picture
Replies 15
Last reply 9/28/2013 - 11:28pm

I am so touched that my family here is worried about me and is wondering how I am.  It makes me feel really good knowing you all care :)  (((HUGS TO YOU ALL)))))

So here's my update:

I went to see my local oncologist not feeling very well, I had been losing weight rapidly, a lot of sleeping, I could barely talk, eat, or swallow due to a met growing near my larnyx, I was prepared for the worst.

 I told him I'm not giving up so we are NOT here to discuss hospice we're here to discuss what's next,  He has another patient that he's been working with with Dr. Minor my specialist so he recommends MEK inhibitor.  I was scheduled for radiation on my throat and my arm.  Today I called to cancel those appointments because the MEK has reduced my tumors!!!!  The one on my arm is almost gone.  I have my voice back and can eat and swallow just fine.  Yesterday I ate so much my stomache hurt!!  :)  I have only been on MEK for a little over a week and it;s amazing!  I am still taking 1/2 dose Z but changing that to Dabrafenib soon, Maybe.  We're scheduling an MRI to see what;s going on upstairs so maybe I can get into a trial still.  

I know I've been given this short window of 6 months to a year with MEK but by then Anti PD 1 may be approved.  I am assuming it is the MEK that is shrinking the tumors and not Ipi but that could also be kicking in.  Who knows? All I know is I'm feeling good and feel like I've been given a miracle.  My daughters wedding is in March 2014 and I feel like I will be there crying my eyes out!  :)  

I didn't even think of MEK being an option. 

Thank you all so much for caring.  

All my best to you all.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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