Stage Four Help Please

Posted By
Anonymous
3/21/2014 10:51am
Activity
Replies: 12

My 62 year old mother was diagnosed with melanoma 6 years ago.  

The cancer was removed, and she was very pro-active with her regular followed screenings/checkups

Last week she was admitted to the hospital for severe back pain, and some large unexplained bruises. Through the various tests ran, we have found that the melanoma has metasticized on her liver and peppered her lungs.  

With all of the doctors tending to her, some are very positive and have actually encouraged me to come here and ask for help, while others are grave, and have given her a bleak prognosis.

I want to help my Mom.  

1.  I am not 100% confident in her oncologist.  Who are the best melanoma docs in South Florida that I can call for another opinion?

2.  What questions should I be asking her doctors?  

3.  What are the best medication/therapy options for a stage 4 patient?

We all thought that she had licked this thing years ago.  She is otherwise a healthy, active woman.

Thank you for taking the time to read this and help me.

 

Anonymous - (3/21/2014 - 2:06pm)

Moffit in Tampa is one of the best...make sure she's being seen by a melanoma specialist.  Treatment fir melanoma has changed dramatically in the past 3 years.   Stage 4 is tough, but many folks have been living for years with it.  Treatment options should include an immunotherapy called Yervoy/Ipi.  You also need to have a tumor tested to see if she is b-raf +.  If she is, there are 2 drugs that work quickly...Zelboraf and Taniflar (not sure of the spelling, but it's a b-raf drug and a MEK inhibitor).  The b-raf drugs typically stop working after several months, but they can reduce her tumor load enough for her to have time for the Yervoy/Ipi to work.  There are also patients on the b-raf drugs for years.  There are options, so don't take no for an answer.  There are also many trials, but you need a specialist to work with her for those.

POW - (3/21/2014 - 2:42pm)

I am sorry that your mother has had a recurrence of melanoma. That must have come as a shock to her. However, the good news is that there has been a lot of progress in treating melanoma just in the last 3 or 4 years so Stage IV melanoma is no longer the death sentence it was before. 

Between the newly FDA-approved treatments and the many more still in clinical trials, your mother will probably have to consider and choose between a number of options. It would be best for her to go to an NCI-designated cancer center for treatment, or at least for a sescond opinion. Moffitt is the only NCI-designated center in Florida and is one of the best in the country. If your mother can't or won't travel to Tampa, Dr. Jose Lutzky and Dr. Michael Schwartz are melanoma specialists at Mt. Sinai in Miami Beach.

 

 

sweetaugust - (3/21/2014 - 4:38pm)

Hi there,

My primary melanoma was in 2000, 2.0mm deep.  My melanoma metastesized to Stage IV to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

I was able to get into a clinical trial for the anti pd1, MK-3475. It has been working great for me.  I started MK-3475 (highest dose - every 3 weeks) Oct 31, 2012...and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was two days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder. 

Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

Laurie

 

Hstevens0072 - (3/22/2014 - 12:13am)

I'm in the same trial, at the same place and was also there two days ago.  I'm also having terrific results, 85% shrinkage.  I wonder if our paths crossed??

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

sweetaugust - (3/23/2014 - 10:28am)

So nice to find someone else in the same trial, at the same place.  I wonder if we have crossed paths?  Dana Farber is so well laid out for patients to have space and privacy, and I have never attended any support groups or meetings...so I have yet to personally meet anyone on MK-3475.

Great to hear you are doing so well also!  I think there are 12 of us being seen at Dana Farber.  Have you met anyone else yet?

Anonymous - (3/22/2014 - 8:26am)

should i not be eating meat or dairy if i've had melanoma?

sweetaugust - (3/23/2014 - 11:18am)

Hi Anonymous!

This is just my story.  What has worked for me, and the research that I learned to try and help myself along the way.  

My original primary melanoma was discovered in 2000 at 26 years old.  That was followed by 3 more melanomas and about 100 other mild, moderate, or severe moles removed between 2000-2003.  In those years I was sick constantly and by November 2003, I had been sick with the flu for 3 months and diagnosed with my 4th melanoma, so something had to change.  

I, with the help of my family, turned to the internet to find help.  That is where I learned about living a more natural life.  So I changed my eating habits to eat mostly raw organic fruits and veggies, and I tried to use less chemicals to clean my house.  Within two days I was feeling better and within two weeks my bloods had all returned to normal.

I kept up with eating and living healthy for several years and wasn't sick and didn't have any more melanomas or bad moles removed.  So for me, this healthy living was clearly working.  But like most humans, over time, I started eating regular junk again.  I'd say around 2008 is when I started eating the standard american diet of processed foods.  And that is when I started getting sick monthly again.  I didn't put it together though, until my stage IV diagnosis in Sept 2012.  

So when I got this diagnosis in 2012, I knew what I needed to do....obviously I was healthy for those years that I paid attention to what I put in my body....so I was going to go back to eating raw organic fruits and veggies again.  If anything, that diet would help me to combat whatever treatment the doctors were going to throw at me.  But this time, since we were talking stage IV, I was going all-out healthy.  

I decided I was going to try and eat a mostly 80% raw orgnic fruits and veggies diet.  I had read and seen a few things that mentioned that meat and dairy were bad, so I gave them up.  I hear left and right that refined sugers breed cancer, so I quit refined sugers.  I still have un-refined suger though, and i seem to be doing ok with that.  I quit drinking alcohol also, because of the mass on my liver....and the liver really doesn't like alcohol.  I also watch what I put on my body (lotions, makeup, shampoos, deodorants.)  Our skin is our body's largest organ, every chemical we put on it, goes right into our bloodstream.)

Another tip that I thought was crazy at first, but turned up over and over again...is jumping on a mini-trampoline (called Rebounding.)  Since my cancer was in my lymph nodes, I had done some research into how to help them.  Our lymph system does not have it's own pump.  We have them to act as our trash cans in our body...yet they don't have a pump to pump all that bad stuff out.  So some simple jumping on a rebounder acts as zero gravity pumping and it helps rid the lymph nodes of all those bad toxins.

And the results of these changes....I haven't been sick, I no longer take allergy medicine, and I no longer need  a statin medication to control my cholesterol.  Before diet change, I was sick with bronchitis about once a month.  And now, it's been a year and a half and zero bronchitis or flu.  

These changes are just what worked for me.  This stage IV diagnosis opened my mind to learn and really  think about life and all that I took for granted.  Our bodies are amazing.  They are built to heal themselves.  We just need to help them by giving them the tools they need...instead of filling them with chemicals that they do not know what to do with.

I hope that helps,

Laurie

 

Anonymous - (3/23/2014 - 4:08pm)

Is it advised that we cut out dairy, my Dr has not mentioned that to me at all?

buffcody - (3/24/2014 - 3:16pm)

And nor did mine nor do I think most oncologists would recommend remedies that are not scientifically based.  That is not saying they are false.  There are rackets our there run by "natural" remedy experts, but there also is good nutritional and exercise information that may prove helpful.  I remember a friend of mine, extensively read in nutrition, saying I should give up all sugar in my diet because sugar causes cancer.  There's a basis for a relationship between cancer and sugar in one's body, but it is not based on how much, if any, sugar we eat. Too bad we don't have a "snopes.com" for cancer advice.

Carole K - (3/24/2014 - 5:49pm)

Hooray for you Laurie!!  I am so happy to hear this. I was diagnsoed in 1995 and had a recurrence in late 1999, confirnmed in Feb. 2000 and then Brain met that Dec..  I saw an East WEst Oncologist and then started a very strict Macrobiotic diet and stayed on it for four years..  I also did alternative therapy, anthroposophical medicine consisted of Mistletoe ( Iscador), Astragalus and Formica injections.  I am still NED 12 yrs. 3 months. Later.  I agree with you that alternative therapy and an alternative diet is not for everyone.  It worked for me.

Best Wishes for a Happy and Healthy Future.

Love and Light

Carole

 

sweetaugust - (3/25/2014 - 10:13am)

Wow - Carole K, good for you!  So happy to hear your long time NED story.  :)

I only found this site the other day, but to find so many of you on here that have been well for many years is just the best news.  This club that we all joined is not the club any of us wanted to join.

For me, I find that eating healthy is not always easy, but I do it, and I feel that is why I have done so well.  A friend of mine introduced me to a book called "Crazy Sexy Diet" a little over a year ago.  She thought I might really like it since I had adopted a similar lifestyle.  I had never heard of Kris Carr before then, but my gosh, her books and movie have helped me so much....being that she also was diagnosed with a stage IV cancer at a young age.  She is now 11 years healthy, and she did it purely on her own with diet and without any treatments. 

Congrats to you Carole K and thank you for your story.  :)

Laurie

Carole K - (3/26/2014 - 1:22pm)

HI Laurie,

Welcome to MPIP.  I was here for many years and it was here I got incredible support and knowledge from caregivers and patients.  I still maintain many friendships originated here on MPIP.  I miss those days.  Laurie, I know many long term survivors who have battled this beast with dignity and dentermination.

We spent hours on end in chat on a nightly basis. It became addictive. Chat is a wonderful place to share with other patients and caregivers.  If you are down it's a place to just get away  It was through MPIP I organized get togethers for patients and caregivers to meet.  It was a great time for all of us.  You will form friendships of a lifetime here.

Laurie the first surgeon I saw, if it wasn't the first question , it was the second he asked.  What kind of trauma have you been through the last 2 to 3 years.  The waterworks started and that day I now realize was the day I knew I had to go deep within myself to beat this.  It has lead to an amazing inner quest to get to the root of what was going on. I had to fidn the core of what was going on.  I learned the culprit was stress. i had to deal with that , find an answer as well as diet, spirituality and just taking care of Carole.

A lot of people have encouraged me to write a book which I started many years ago.  Recently my alternative doctor asked me to write a book.  WE shall see where it goes.  I am not against conventional therapy at all. It just wasn;t for me.   From what I have observed from dealing with many patients is those of us who have followed alternative medicine have had just as much success.  It's a choice I made many years ago adn I try to continue on that part of my journey.  It is difficult with diet and at times I just have to give in.  i had gone completely off a diet for awhile and I saw huge changes. I have thankfully been able to head back in that direction a little at a time. 

Things happen in life as they are supposed to.  I have taken the time to look for the gifts of this disease and that helps me stay positive. 

Life is good and  Hang tough.... 

Sending you big hugs and positive thoughts.

Love and Light

Carole