stage 4 and scared

Posted By
Anonymous
4/21/2014 7:07pm
Activity
Replies: 9

I am newly diagnosed stage 4 patient with mets in spleen liver and brain. I am currently on vem as have tested Braf positive. However I am sick with worry about my prognosis. I am only 33 but I am not going to make it to my retirement am I? X

Anonymous - (4/21/2014 - 8:25pm)

Hello friend,

So sorry to have to welcome you to the club. It's a shocker and will take adjustment but as you do your homework you will find that the timing of your diagnosis coincides with a number of breakthrough drug treatments that have been having some extremely encouraging results. I am hopeful that you have put yourself in the hands of a melanoma oncologist specialist who is guiding you through this maze. Type NED in the search box and you will find a large number of people who, like you, have had some pretty horrifying news delivered but are currently experiencing some really encouraging results. After 2 3/4 years it has settled in a bit but when the freak out mode starts to kick in during a bumpy patch I just focus on all the things in my life I am thankful for.  That exercise seems to put things in perspective and then it frees up the energy away fom the negative what ifs but on the task at hand of staying on top of the latest melanoma drug results, ones own plan of attack and remembering to enjoy the now with the people you most enjoying doing that with. Good luck, keep the faith, stay in touch. We can all grow old together. 

Anonymous - (4/22/2014 - 4:20am)

Hi,

I am 35 years old, stage 4 since February with mets in in lungs, liver, adrenals, etc.. luckily none in the brain at the moment. Taking BRAF and MEK inhibitor of GSK which is the current alternative to vem.

To put things into perspective. When I got my first dose of Dabrafenib, my doc said that 2 years ago when they first saw the effect of this drug they could not believe.that people with that condition would just get up from bed and walk out of the hosptial.

My point of view: We got caught by melanoma too early to not worry about it (in fact it is a good reason to be worried) but on the other hand too late to loose all hope right away.

With Vem and Dabrafenib the 2 of us are not at our first line of defence and during the past few years research has already given us more and more options with many more to come. On this forum you will even find stage 4 people who survived in a time when all these treatments were far, far away.

So I think whenever we can and I know this is not always possible, hope should dominate our lives and we should be grateful for every moment we have as it is a gift. This is something that goes for everybody on the surface of this planet, not only for people with cancer, though it might be more easily accessible to us!

Keep reading posts in this forum, keep reading patient stories, keep your faith and hope and stay aware that you are not the only person out there with stage 4 who is scared of this desease!

Anonymous - (4/22/2014 - 4:21am)

sorry, meant to wrtie NOW at our first line of defence....

Kate_perth - (4/22/2014 - 6:18am)

This was one of my first thoughts when I was diagnosed too... I was 30 when diagnosed, stage 4 at 31 and now looking forward to my 33rd birthday in October. Now it's had some time to sink in (I'm stage 4 - liver, lung, bone, distant lymph nodes), I fully intend to see retirement! So far I've outlived 3 nasty prognoses so I've stopped listening to them. Honestly, the research for melanoma is amazing and you'll be surprised how many people are living their lives with stage 4. My advice is see a specialist, always know the next step in treatment and keep the stress to a minimum! Exercise is great.. I only walk but it gives me time to reflect and ensure my body is still working the way I need to live life. Eating healthily makes me feel a little more in control ( I mean just healthy, not cut out everything you love and load up on weird supplements!)

im on the braf/mek combo and have seen great results so far, with some uncomfortable fevers and chills at the start but all cleared up now. I work full time (granted around my medical appointments) and do all the things I always did.

dont google! Most of the information is outdated... 

Might be a bit early for this advice but it's the best thing anyone has said to me...

You can be terrified you're going to die, but if you live another 20 years you'll have wasted all that time worrying rather than living! 

Xxxx

Kate_perth

tschmith - (4/22/2014 - 8:09am)

Love your last sentence, Kate_perth!  Faith and hope go a long way plus I agree that a good walk really helps with stress and sleep. 

Times are changing for advanced melanoma patients. I just finished a Phase 1 Clinical trial at NIH called MAGE TCR which involved gene therapy.  I won't know for some time if it worked but I'm glad I tried.  If not there are more options... (I've tried Yervoy...had to stop after two because my pituitary gland stopped making cortisol) and a couple of surgeries.)

Oh, I was first diagnosed at 43 (small spot on arm) and had no recurrences until I was 59 when a fall in my classroom sent me to the ER only to reveal a brain tumor (melanoma) which was removed and has not returned.  I've had other problems, though...mets on L2 vertebrae, one in the lung, and an area in the chess wall. Some other odds and ends too. This has all happened since February of 2013.  

This is certainly hard...no doubt about it but you aren't alone and there is a lot of reason to hope that one of the new treatments will be the one for you!

Terrie

BrianP - (4/22/2014 - 5:20pm)

Great to see you post again Terrie.  Been wondering how you were doing.

Brian

kellygrl - (4/22/2014 - 8:35am)

My husband was diagnosed 3/12 with BRAF mets, 13 to be exact. He had just retired 20 yrs military, then diagnosed. He still took a job at Lowes to keep busy! Hit a rough patch last fall/winter... mainly due to swelling and quit Lowes, but things seem to be getting back to normal. Just found out yesterday all his tumors are shrinking thanks to 14 mos of Zelboraf, 2 Gamma Knife treatments (there will be a third) and currently dual treatment Yervoy with Dabradenib/ Trametinib. Labs have been great, so far so good!

STAY STRONG and keep a Positive Mind & Attitude!! I know it seems difficult to even grasp that concept, but you must... it will get you thru and you really have no other option.

Hang in there, Kelly

kellygrl - (4/23/2014 - 6:14am)

Ok, this was supposed to say brain mets... yep, the kind the statistics say you will only live 6 mos, less then a year... Blah, blah, blah..

I was diagnosed Stage IV in October of 2010, and thought I would never see the humming birds return to my feeders ever again. Yesterday, there the were, right on schedule. It was the fourth time they have returned since then, thanks to what is now called Taflinar and Mekinist. This is the best time in human history to have melanoma come at you. Hope, gratitude, and vigilance will keep those early, creepy thoughts at bay. Give the Reaper the finger and resolve that he may take you by lightening, avalanche, or shipwreck, but you will not let this melanoma take you away. Keep strong and hold on to your courage at all costs.

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