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8/19/2010 12:49am
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Replies: 21

Hi. This is my first time posting. I am a 26 year old male living in San Diego. 3 years ago I had melanoma removed my back and was told all went successful. Got regular checkups and was told I am clear. This summer I developed a few cysts on my back in the same area. My Dermatologist did a biopsy and just over 3 weeks ago he told me my melanoma had metastisized. Stage IV. Long story short, my PET scan showed a tumor on my chest and back just under my skin, a tumor in my liver and a couple in my lungs. I had an MRI this morning and will get the results friday. My oncologist suggests I do chemotheropy followed by Ipilimumab. He also told me the grim outlook in all this, with not much hope. Gave me my sentence. I know the statistics and I accept that but I feel as long as I'm alive, breathing, and feeling ok, then anything is possible. And I want my doctors to feel the same. I know they have to look at statistics and such but with every person being so different, I don't see why they can't mention a possible positive outcome. Their outlooks are really affecting my outlook. My whole life I've had a positive, determined, and smart attitude towards any bad situation I've faced. But now, with the constant unfortunate news I keep getting, I find myself more and more worried.

So what I am seeking in this post, is anyone, who has experienced or heard of someone getting though an advanced stage melanoma. Please tell me your story. It's those stories that make me feel my best. They let me know that even if the odds are against me, I have a fighting chance.

Thank you.

Hi Kevin

yes there is hope, There are always to sides to the Stats. you just might be on that good side. At one of our Support Group meetings i met a guy  in his 40's who had recovered from Melanoma, he had, over a 4 year period Lymph  node dissection, subq's removed a lung resection then Brain tumor removed followed by Whole Brain Radiation. The good bit is his last treatment finished in 1994!  

I believe there is a trial that combines both Ippilimumab and chemo, many would suggest a 2nd or 3rd opinion which might offer you a different outlook or a plan if this treatment is not successful. Ask for your tumor sample to be tested for Braf, Ckit and Nras  Mutations there are drugs targeted towards these if you are found to be positive.

What works for one person may not work for another that is the nature of this disease just keep searching until one works for you. You need to be in control, be a proactive participant in the management of your disease.

best wishes

James

Fen - (8/19/2010 - 7:45am)

 

There's lots of hope, Kevin, and many will respond with their personal stories.  I would just like to suggest you find the nearest melanoma center and see a specialist there.  Melanoma is an odd sort of cancer and you will be best served by someone who works with it exclusively.   Where are you?  Can you travel?  

Also - some Stave IV people on the board have done IL-2 and have shown a durable response so you should start checking on that treatment.  

Good luck!  You've got some hard work ahead of you but you can do it.

Fen

PS - ignore the stats. Five year survival rates are by definition - 5 years old.  There are lots of new treatments and lots of survivors.

Kevin,

Melanoma is not a death sentence. Your oncologist is using Chemotherapy to shed tumor-specific  antigens for presentation on the Dendritic Cells (DCs). Scientists have recently identified a population of DCs (merocytic DCs [mcDCs]) that potently primes both CD8+ and CD4+ T cells to cell-associated Ags upon uptake of apoptotic cells.(dying cells). If activation of these T cells don't occur, it may be due to the surpressive function of the Tregs and the tumor microenviroment.  Ipilimumab (Anti-CTLA-4) surpresses the Tregs fuction by blocking the B7 receptors. It is the "spark" needed to jumpstart you immune system to reconognize  the Melanoma.

Yes, there is hope. We are near a major breakthrough, but we first have to verify the protocol.

if you want to read about a success story of a stage IV patient, please read "Melanoma and the Magic Bullet". The story starts on page 16. It is my story. It can be found at Meanoma Missionary site.

http://melanomamissionary.blogspot.com/

http://www.box.net/shared/kjgr6dkztj

 "Melanoma and the Magic Bullet"

"Today might be the worst day of your life...but tomorrow could be the best. You just have to get there."

~Unknown~

Take care

Jimmy B

Rodensir - (8/19/2010 - 8:37am)

Sorry you have to deal with this and I understand your feelings.

You never know.

Six years back I had similar predictions I did clinical studies at NIH that were with some of same drugs you are trying and things sort of worked out.  Once I understood the statistics I made sure to plan out a course of action that would provide my loved ones with the best.  I then made sure there was nothing unsaid that I wanted to have said to all my loved ones.  Then with calm that comes from accepting what I could not change myself I gave myself up for treatment and made the best of the situation that I could.  I rode a bicycle across the country my son, paddled the Mississippi in a canoe with my wife and then walked the Appalachian Trail with my dog, for no other reason than those things turned my crank, and I could do them.  

Sorry I have no way to predict what treatment works best, what foods to eat, what church to go or other stuff.  The only secret I can give you is to view this time as a gift for you to love the ones you do, let those people love you back, and do the stuff you love to do that you can and undergo treatments as best you can.  I found cancer support groups helped me a lot reach this point so I do recommend them, but they are not a cure all. 

Best of luck.

Allan

Joyce - (8/19/2010 - 8:15am)

Kevin,

 

If you saw my post yesterday than you know that my husband's oncologist was full of hope yesterday. Dick has been battling stage 4 melanoma since 2002. He has been NED since his last surgery in 6/2006. When we first learned he had stage 4, the oncologist offered almost no hope. Dick did get in one of the first trials for Ipi. It was called anti ctla4 back then. Our oncologist yesterday told us of the results of the exciting drup. He also spoke of new methods to target melanoma tumors. All in all, chances of survival are much greater today than 8 years ago. Go to a melanoma specialist. Don't go anywhere else. The people on this board will tell you where the best ones are. They are extrememly helpful. Hang in there and have a lot of hope.

 

Joyce from MA (formerely Dick's wife)

lhaley - (8/19/2010 - 9:04am)

Kevin,

In my opinion you need to seek a different Dr. This Dr. might be very good but his presentation is going to be wearing on you.  You need a Dr. that is truthful but you also need one that feels that these drugs will help.  There have been many breakthroughs recently and you could be a responder!

Many on the board have seeked second opinions.

I have been stage IV now for 4 years. Everyone's disease is a bit different, you are not a statistic!!  It's normal to be worried and sometimes you have to give in to the emotional tides, but it's more important after that to get back into fighting mode.

Wishing you the best,

Linda

KatyWI - (8/19/2010 - 9:07am)

Hi Kevin,

I was just like you, dx in 2001 and then clear for eight years, only to be dx with recurrent stage IV disease last year.   Surgery and IL-2 got me to NED and now I'm busy living my LIFE.  There's hope.  Go ahead and cry and say "I"m scared" as many times as you need to - then keep moving forward with purpose.  The Chemo + IPI trial sounds like  a good thing to try.

Best wishes,

KatyWI

Just keep going!

Hi Kevin,

My name is Jerry and I'm stage IV , dx'd in January of 2009.  A few months back we had a post of Stage IV survivors on the forum.  The number of posters was very high and very encouraging.  Survival stats are numbers, and you are not a number.  Your doctor is reacting to how he/she was trained to convey information in a impartial calculated manner.

Search out information for the best Melanoma Center in your area and call there immediately and start interviewing doctors.  You have to become your own advocate.

There are many around here who have walked in your shoes who will tell you of their experiences and allow you to have additional info and questions for your medical team.

I would sugges that you start a new thread and title it something link "San Diego Melanoma Centers" or Mel Centers near San Diego." I'm sure that you will get many useful replies.

I'm a participant in an ipi trial, now at week 80 well past my suggest "expiration" date.

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

bcforce - (8/19/2010 - 9:26am)

Hi Kevin. 

 

I am currently in Stage 4, and am in treatment  with Dr. Hamid and Dr. O'day at the Angeles Clinic in Santa Monica.  They work closely with the John Wayne Cancer Clinic, also in Santa Monica.  I would highly recommend that you make a contact with them and set up an appt.  They are on the "cutting edge" of Mel treatment, and will tell you honestly just how it is!  It's only about a 90 minute drive from where you live, and would be well worth your time to be able to access their expertise.  We travel 3.5 hours to get to Santa Monica, and feel is it very well worth the time. 

 

Best wishes.

Bob from Visalia

Anonymous - (8/19/2010 - 12:36pm)

Bob from Visalia,

 

I am stage 3c and thinking about doing this trial.

What is the treatment: pills? or IV? how often.

Also, what are the side effects?

Since taking drugs, what has been the results??? Positive I hope?

Thanks

King - (8/19/2010 - 9:19am)

Hi Kevin,

You must hang onto hope but be realistic.  I advanced to Stage IV in 2005 when a 4.5cm tumor was found in my liver.  I had a liver resection (70% of my liver removed) followed by a year of participating in a Phase II clinical trial of GM-CSF.  In 2008, I had a recurrence with a tumor around my pancreas and a subcutaneous tumor in my left hip area.  Of course, this was very bad news since I had gone 2 1/2 years with no evidence of disease (NED) and now I had a recurrence in 2 different areas.  However my aggressive surgeon once again pulled it off.  I realize that surgery is probably not an option for you at this point because of several areas of metastasis.  However, the odds were against me...I have been a Stage IV patient for 5 years now.  There are more systemic treatments in trials now then ever before.  

I've been treated at Moffitt Cancer Center in Tampa, FL (where I live).  Do your research, post your questions and surround yourself with supportive family and friends.  We have a lot of personal experience here and love to share it.

 

Stay Strong

King

Stage IV 7/05 Liver mets

JenM - (8/19/2010 - 11:28am)

When I read your email the first thing I thought was get a new doctor. You simply need both: honesty and hope from your medical team. And if u r lucky you will find compassion. I am currently stage 4 and going thru medical treatment but my surgeon oncologist calls me every 3 weeks or so just to see how I am doing. It's not like I have surgery coming up.....he just calls to say how r u. I can't tell u how much that means to me.

U do have hope...I don't think there has been a time in melanoma history like right now with the drug ipi coming out and other promising drugs that they will probably combine with ipi. I'm sure others who have been on this board longer than me will agree. Although they have probably see other promising drugs come and go. Buy I truly believe we r on the cutting edge of some great treatments.

Keep posting...there r some great people here. I am only a recent stage 4...went to my left breast in the beginning of June...and while I was deciding on a clinical trial a brain mri found 3 lesions. So far the lesions r stable. I currently completed 3 cycles of Temodar, cisplatnium and vinblastine. I also take an oral chemotherapy called sorafenib/nexavar. I do have the Braf mutation and the sorafenib is one of the early braf inhibitors that did not get approved but has helped some. I get it off label, the drug is approved for liver and kidney cancer.

Anyway, I'm sorry to have gone and on...I know u wanted to hear from long term stage 4 patients. I'm not there yet but that is my goal!

Best of luck to you. Please keep in touch.

JoanR - (8/19/2010 - 11:56am)

I wish Charlie would post about stats.... It is unfair of your drs to rely on stats to "determine" your outcome. We have many people here who have a longtime Stage 4 dx and are living well...Of course you will worry, but hopefully there will be lots of posts from longterm Stage 4 survivors to relieve your anxiety

Anonymous - (8/19/2010 - 12:32pm)

Hi,

 

I would contact Dr. Daniels at UCSD Moores Cancer Center. Dr.Daniels has melanoma clinical trial going on. He can help evaluate your condition & advise treatment.

Contact info:

858.534.3804

washoegal - (8/19/2010 - 1:20pm)

Sounds like your doctors are on it and waited no time.  Hopefully your tumors are small.  There are many success stories here, if you search "NED" No Evidence of Disease either here or in the archives you'll find some long term survivors.  It's too bad you feel like your team isn't more supportive but the drug combo they are suggesting is one of the best we have right now.  Keep the fighting attitude, you can beat it!

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

Hello everyone. I would like to say thank you to all of you who replied. To wake up to 15 replies, all different and all very informative is the best news yet.  I felt unabashed happiness and even genuinly smiled after reading your replies. To JimmyB, I bookmarked your blog and downloaded some of your docs. To the anonymous poster who reccomended Dr. Daniels at UCSD, I actually have an appointment to see him tomorrow. I was told to take my MRI scan to him by the oncologist I saw a couple days ago. I was nervous about seeing yet another doctor, but after your reccomendation, I looked up him up, realized it's the same Dr. and am feeling very optomistic about meeting him. To everyone else, thank you all so much for the positive insight, outlooks, quotes, and information. Keep them coming. I almost feel like me again. Take care, all of you.

Anonymous - (8/19/2010 - 7:49pm)

Hi

 

I am glad you called Dr. Daniels...he is a real nice guy, as well as, a wonderful doctor. Please let us know how your appointment goes. We all support you.

I actually didn't call him, I coincidently already had an appointment to see him. The oncologist I saw on tuesday ordered me to get an MRI and see him for the first time with my results tomorrow. I had no idea what to expect which is why I was so happy and relieved when you said his name and reccomended him. I looked him up after that and he seems really promising. I'm feeling good about this. I hope he feels good about this too. (fingers crossed).

Jenjen - (8/19/2010 - 8:47pm)

Hi Kevin,

 

My name is Jen and I am currently in San Diego. I was diagnosed stage 3 melanoma last year at age 26, am now 27 and am just waiting on the results of a pet/ct scan i had today. ..I just wanted to let you know that if you ever want to talk or get together i would be up for it. Also I have some great doctors here in san diego , encinitas and in san fran so if you ever want their info for a second or third opinion let me know! Dr.Mclay in encinitas is also running a trial that is showing promise and it is close to home.

 

you can email me at hennifersb@aol.com

 

Hoping your drs. app goes well. Keep your head up , there are lots of stage 3 and 4 survivors here !

Jenjen 3a

Jenjen - (8/19/2010 - 8:48pm)

Hi Kevin,

 

My name is Jen and I am currently in San Diego. I was diagnosed stage 3 melanoma last year at age 26, am now 27 and am just waiting on the results of a pet/ct scan i had today. ..I just wanted to let you know that if you ever want to talk or get together i would be up for it. Also I have some great doctors here in san diego , encinitas and in san fran so if you ever want their info for a second or third opinion let me know! Dr.Mclay in encinitas is also running a trial that is showing promise and it is close to home.

 

you can email me at hennifersb@aol.com

 

Hoping your drs. app goes well. Keep your head up , there are lots of stage 3 and 4 survivors here !

Jenjen 3a

Charlie S - (8/20/2010 - 11:08pm)

It is easy to be a number with melanoma; the challenge is to be an individual..

Because I was diagnosed 23 years ago with Stage III melanoma with an unknown primary and have been Stage IV since 1996 with now I think 8 recurrences, I just might be able to say to you that you ain't dead yet..

You are a young man, as was I when first diagnosed.  I was at the top of my game knocking down pretty major bucks.

All that did change except I decided to be me and not a cancer number.

Yes, people do survive, but not all.  What you have to decide is which one you might like to be and make a plan.

You might live and you might die, but YOU and not the numbers will have an impact.

Charle S