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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Linda J's picture
Replies 8
Last reply 8/30/2010 - 2:17pm

I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

I am upset because the MRI showed that there are several lymph nodes involved and one of them is "deeper".  The deeper one is about 1cm.  Am I doomed because there are several lymph nodes involved???  Have other people had multiple lymph node involvments and still are doing well today??

They are going to see if the tumor in my side reacts to any of the the inhibitors so that hopefully I can do a clinical trial.

I am just so so so devestated right now.  I feel hopeless and I would really really like to hear that it is possible to survive a large tumor with multiple  and deeper lymph nodes involved. 

Please respond.  Thank you

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Lauren mom to Jenna's picture
Replies 14
Last reply 8/26/2010 - 9:35am

I am feeling guilty for not posting sooner, but we have been in the heat of it.  Jenna started to get really sick on the ipi trial, and we were thinking that maybe it was a good thing, but her disease continued to grow and spead.  She had bumps coming up everywhere...neck, chest, back, abdomen, even in the muscles of her arms and legs.  We knew we were losing ground quickly.  We had been pursuing MD Anderson for a MEK combo trial (since she responded so well to the MEK) for several months, and finally they were able to get her a spot in the BRAF/MEK trial...and none too soon.  It was difficult just traveling to get there.  We have been here for 2 weeks now and she started treatment one week ago today...Amazing!...her lumps are melting away, and she is feeling much better.  The CT scan that she had last week prior to starting was devastating.  Pretty much the only place she didn't have disease was her spleen.  She will not be scanned again for 2 months, but as we watch her visible disease fade, and she continues to feel better, we are encouraged to believe that internally she is responding well too. 

Thank you to all of you who have been praying for, Jenna.  It has carried us through some real lows to a place where we have hope for healing again. 

We are scheduled to go home tomorrw, and are looking forward to getting some "normalcy". 

Happy in Houston!

Lauren (mom to Jenna)

 

 

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John T's picture
Replies 7
Last reply 8/26/2010 - 4:34pm
Replies by: jag, Julie in SoCal, John T

Hi all

Just though I would check in with a postive update. Since my diagnosis (Stage 3B - Lymph node in leg)  and LND operation back in Feb 2008 , some 5 PET Scans and numerous blood test later - no sign of disease. I went for surgery only option (no interferon or other treatment), and am feeling fit and healthy. Running "mini-iron-man" (running,cycling,swimming) events and enjoying life.  

Best of luck to everyone.

Live Strong

John from Bangkok

 

 

Live strong (Borrowed from my man Lance Armstong!)

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Gordon LG's picture
Replies 1
Last reply 8/25/2010 - 10:03am
Replies by: Carver

About three weeks ago I stopped the self injections after nine months of treatment. Two days after my first missed dose, I started getting severe tendonites, and muscle aches, which gradually spread to pretty much every muscle in my body. Feels like arthritis. Anyone ever heard of this happening? My Onc. doesn't think it's related, but how could it not be? Symptoms diminishing somewhat, but still very much present.

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It has been awhile since Lauren has posted. I am worried. Anyone heard from Lauren?

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/24/2010 - 4:51am
Replies by: Anonymous, Pat-Wife of Carl, Linda J, KatyWI

Posting for a friend who is concerned with bruising under the arm and chest that won't go away. Person is already dx with mel (in the neck area) and has recently found additional nodes that appear to be involved....neck and chest area.  Has anyone had experience with bruising and melanoma?

Thanks for your thoughts.

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Terra's picture
Replies 6
Last reply 8/25/2010 - 7:59pm

hi - derek has a metastasis in a right hilar node - it showed up on a pet scan 2 years ago and is now growing (although slowly) surgeon at our hospital says it is unresectable - would love a second opinion anyone ever have this done and who was your surgeon?

 

we are likely starting Il-21 vs DTIC in a couple of weeks but if this is removable we want that option - derek is 37 and in otherwise good health

 

thank-you

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Jenjen's picture
Replies 5
Last reply 8/23/2010 - 1:53pm

Hi all,

 

Just wanted to let you know I had my 3rd PET/CT last week and it went well. Still shows NED after a little over one year. I was diagnosed last July at age 26 with stage 3a melanoma on my foot. Currently in my 9 month of interferon injections and although it sucks..i am almost done ! Sending myself to Europe for a couple weeks come November to celebrate. I know one year NED is not much but i am trying to live my life like it will never come back ..even if i know there is a huge possiblility it will.

 

This entire experience actually made me want to change careers and now I am back in school to try and get into nursing school and I love it!!!!!  Praying for continued NED for myself and everyone on this board. And for those who are not at NED yet...praying you reach it with whatever treatment you are doing.

 

Jenjen 3a (san diego) 27 :)

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lovingwifedeb's picture
Replies 20
Last reply 8/28/2010 - 10:17am

My husband, Bob thought the song from The Gambler, from Kenny Rogers was appropriate after his doctor's visit on Friday so I will work with him on this one hard as it might be. Betting is all about percentages, so if you are a betting man/woman and the stakes are high it just might be an all or nothing bet for you if your life is involved. This is how it went down for Bob with the melanoma specialist in the Portland area on Friday.

 

Facts:

• Bob has melanoma stage 3, it's been 30 days after surgery

• For most people with stage 3, this gives you odds of 50/50 of getting melanoma again of a more life threatening development within 5 years which turns into stage 4.

• Because of the size of Bob's tumor which was 2-3 inches, which was taken during surgery, his odds have now become 70-30 of getting melanoma again within 5 years and will threaten his life, stage 4.

• Treatment available for Bob:

1. Interferon: treatment for 1 year, makes you sick like flu, 5% works

2. Vaccine: made with protein from Bob's tumor, builds up his immunity so his body recognizes melanoma as an enemy and kills it. Clinical Trial, 2 people on, 1 person off, – NO GUARANTEE

3. Do nothing and wait

 

Reality Check:

The mean probability of death by car accident for United States residents is 1.49%. Source(s) 2005

 

Choices...

So, it was an emotional charged Friday when we met after work, talking about his doctor's appointment. It was hard seeing Bob realize his future in numbers for the first time in these many weeks. As much as I wanted to be there for that doctor's appointment when Bob told me that he had broken down for the first hearing about his uncertain future I knew reality had set in . Still trying to grasp the facts of this disease, the way it works against you fighting to take your life away and everything you have worked for this became no longer impersonal.

It was the first time I didn't know what to say to Bob. So far I have tried to be there for him and try to feel what he must be thinking and feeling but I guess there comes a time when a person has to walk that walk alone. It's a head on collision and I certainly was not ready for it so I know Bob was not either. So, is the glass half empty or is it half full? Which side of the door are we standing in? 70/30 Is this an all or nothing bet?

If you believe in religion you get a free pass and turn it over to a God to share your burden and let it be taken from your shoulders so you can forget about it.

But... in my heart and in my mind it's not that simple. This earth is powerful in its clutches and for those who remain here and we can't help but feel forsaken. Love I feel is a powerful gift and my only hope is that whatever time Bob and I have together our marriage stays strong and true during this trial and that our love brings a brighter light into who are for each other.

Here's my promise to you, Bob. I will try to not take you for granted after today, and to take time out and enjoy our lives in whatever way possible within our means. I am behind you100% and that you can count on. If you had to bet on anything in your life it would be that I love you with all my heart and soul. I will support you in whatever decision you make when it comes to your health care. It is your life we are talking about but it is your "Quality of Life" I am reminding you about too. Selfish as I might get at times I do want you with me but I also want you to be happy here.

Follow our family blog site:

http://redesign08.blogspot.com/

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Sherron's picture
Replies 3
Last reply 8/23/2010 - 12:43pm
Replies by: Anonymous, Janner, Sherron

Jim's very enlarged lymph node (cervical) no treatment at all is feeling numb all arount part of it going up into the scalp and  up above the ear.   Does anyone know what this means.  Thank you.

 

Take Care

Sherron, wife to Jim

,

 

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Sharyn's picture
Replies 7
Last reply 8/22/2010 - 9:05pm
Hi everyone,
I had my surgery on Thurs afternoon -- mastectomy and excision of 8 tumours from my leg. All went well, and Dr Pace was very pleased. He left only one tumour on my leg because it was so close to another excision, he wouldn't have had enough skin to stitch it up without pulling on the stitches of the other one. It's only a small one, so we'll get that and the one on my back another time. I was put in ICU only because there were no beds available on the surgical floor. There were a lot of machines running, whirring, beeping all night long, so sleeping soundly was near impossible. But Jim went out and bought me some earplugs, and that helped block the noise quite a bit.
 
I came home from hospital on Fri, and I've been pretty much out of it ever since, thanks to the Demerol every 4 hrs. I'm not in any pain, and I feel pretty good emotionally. It's amazing how much pain you learn to endure. I didn't realize how painful my breast was, but now that it's gone, this pain-free feeling is unbelievable! So although I miss Betty Boob, I like the painlessness even more.
 
The home care nurse comes by for daily dressing changes, but she said today that everything looks so good and clean, she'll only come every 2 days. I have 30+ staples from the mastectomy,  plus a load of stitches in my leg. All that gets removed 10 days post-op. I also still have a drain, but I have to wait until the drainage is less than 30ml/24hrs before it can be removed, which should be in a few days.
The day before I went in hospital, I got a call from Montreal to say the ipilimumab trial was now open. I explained what was going on with me, and she said that was fine. I just have to wait until I'm 28 days post-op, and I can start. So we're looking at around mid-Sept for Montreal.
Thank-you for all those prayers, well wishes and positive vibes.  Keep up all that positive energy. It's what keeps me going.
 
Hugs
Sharyn
Stage IV

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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emilypen's picture
Replies 3
Last reply 8/23/2010 - 3:05pm
Replies by: emilypen, Terra, Lori CO

Hi All,

My husband is about to start a combo trial of BKM120 ( a P13K inhibitor) and GSK1120212 ( a MEK inhibitor). Just wondering if anybody on the board has taken either of these drugs separately? and if so what were the side effects and results?

Hubby is stage IV with bone mets and 1 soft tissue tumour, and about to start radiation for the bone mets pain this week.

thanks,

Emily

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sharmon's picture
Replies 13
Last reply 6/22/2011 - 5:26am
Replies by: PeterS, Anonymous, triciad, Rocklove, King, Lori CO, sharmon, emilypen

Hi  An update on Brent,  He has been on the trial since Feb.  He is feeling good and is still working with a Local derm on antibiotics and creams to help with the really really bad rash.  The derm here in Bradenton Fl  was instrumental in producing a cream that is being tested in a trial in CA for inhibitors induced rash.  He is really looking better each day. 

Anyway overall 30 percent reduction and no new mets.  

The week before his scans and the week after the scans  we moved out of our house and into a motorhome.  We are going to travel for 2 months.  He was tired but it was doable for him.

We are Blessed.

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Knutes Pam's picture
Replies 7
Last reply 8/23/2010 - 11:51pm

Knutes brain bleed has stopped and he has been moved to a regular room for observation.  Speech comes and goes as does understanding of what he hears.  He wanted to know WHAT foreign language he was speaking-- since we couldn't understand him.  If I only knew the answer! It was english I'm pretty sure.  Still right side involvement.  As the blood moves a bit he can sometimes close his right hand if he is looking at it.  He can't do it at all if asked.

I'm hoping for more in the way of answers on Monday. 

Pam

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I would appreciate a response from the lady whose husband has completed 3 rounds of IPI.  She had a reply to Nancy on 8/18/2010.

My Dr. has entered my name for a clinical trial for IPI.  He said they might not accept me or rule me out for some other reason.

And they kind pick canidates on the lottery system. I have had Melanoma for 4-5 year .For awhile it did not grow but has started again.

I have just finished 3 rounds of Termodar and it didn't do much good.  My problem is I am a 78 yr. old male with serious heart disease

so might not be able to tolerate IPI. I am curious as to your husbands age and his state of health before starting IPI. My Dr. said I may have

to make a decision within 2 weeks.  Hope to get a reply from you. You may email but I don't want to post my address on the forum. Thanks

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