stage 4 newly diagnosed

Posted By
Anonymous
7/21/2014 6:34pm
Activity
Replies: 7

Just been diagnosed with stage 4 melanoma in liver spleen and brain.therefore would love to here stories from other stage 4 people about how long they been surviving it for and where they have it. Thanks

Swanee - (7/22/2014 - 12:58am)

Hello!

Sorry you have been diagnosed with melanoma, you must be so distraught, anxious and discouraged. Please know there is hope and there is more hope than ever, much more than a few years ago!  So much information on the internet is not up to date, so please disregard if you have been there!  You have discovered an amazing site here and you will soon be embraced by so many who can comfort and direct you to the best information available.  You will be better served if you fill out personal history, at least indicating where you live, that would be the first step as you need to be in touch with a melanoma specialist, only they are up to date with the latest treatments!  There are many here who are stage IV and have lived well, despite their cancer diagnosis, so keep positive thoughts and envision yourself living a long time with a bit of an obstacle in your path, but remember,  there's always a way around an obstacle!!  Trust me, everyone here has a story to tell about how to find your way around this big giant. It takes time, but if you stay connected you will learn a lot here and you can discover so much by doing searches and reading older posts!  Good luck in your journey!

Swanee

Patina - (7/22/2014 - 2:46am)

Hi,

My Mom was diagnosed last year with stage IV and had 8 brain mets treated in December with gamma knife.  She ended up starting ipi/Yervoy 4 days later. Seems there is good data on patients doing better when the two treatments were used at the same time. -  "The patients who received ipilimumab had a censored median survival of 18.3 months (95% confidence interval 8.1–25.5), compared with 5.3 months (95% confidence interval 4.0–7.6) for patients who did not receive ipilimumab. Ipilimumab and stereotactic radiosurgery were each significant predictors of improved overall survival (hazard ratio = 0.43 and 0.45, with P = 0.005 and 0.008, respectively). "

She has done really well even though she got colitis and ended up having 16 brain mets treated in April. No adverse issues with cognitive function.  Her last brain scan was good, 95% of the tumor mass on her scalp/neck were gone 3 months or less in, the tumors in her trunk were either smaller or the same on CT scans. (These scans were taken 2+ months in and at 6 months out. Original scans were taken 1 month before she started treatment, which was delayed due to a mis-diagnosis. They said she did NOT have brain cancer, when she had 3 very clear tumors!)

Being treated with a Melanoma specialist is essential and I advocate having a second or third opinion and making sure that the doctor reads the report and reviews the MRI and any other scans.  I say this because on TWO separate occasions were were told COMPLETELY wrong information. 1) No brain tumors. 2) There is 1 new tumor, when another radiologist finds 16 the next week!

You should ensure that you are tested to see if you are BRAF positive and for PD1 too. Knowing this gives you options so it is best to get this done ASAP.

If you are in Southern California I highly recommend Dr. Mike Wong (oncologist/melanoma specialist) and Dr. Eric Chang (radiologist) at USC in Los Angeles.  I also recommend Dr. Peter Bosaberg from the Los Angeles Clinic. - He found the brain tumors the radiologist missed. 2 other melanoma specialists who she she saw didn't look at the MRI's and would have clearly seen them if they looked.  (Dr. Mike Wong was the 4th melanoma specialist she saw and we are completely confident we choose the right doctor.)   

I also recommend getting copies of all reports, scans, MRI's the day they are preformed or requesting that they be faxed/mailed to you.  Keeping this in one folder and taking it with you to appointments can be helpful.

Lastly, you should find a advocate to go with you to your appointments. My Mother could not have done this by herself and many people would struggle with this due to emotions or sheer amount of information/choices. I'm a bit of a geek so I've been able to gather and understand information some might not. I also am quite inquisitive and have read a number of studies trying to understand the options....   This has been helpful and frankly my Mom would have likely been cognitively impaired or dead by now if we had not seen Dr. Bosaberg and he had not been so diligent. 

Good luck! 

 

PS

I understand that there could be some trials with ipi/Yervoy and Mercks MK-3475 coming up at some point for those with brain mets.  If you could get into one of those after gamma knife radiation I'd move heaven and earth to do it. - Just my opinion.  - If not, I'd go with gamma knife radiation, ipi and if ipi failed see if you can get an MK-3475 before you try BRAF/MEK, if possible. Not sure if you need to fail BRAF/MEK first.

Randy437 - (7/23/2014 - 12:58pm)

I have been stage IV since 12/07 and NED almost five years.  Mets have been surgically removed from both lungs, brain and small intestine.  I may have benefited from a vacine trial at the University of Virginia - but there's no way to be certain.  While a positive attitude is sometimes difficult, it's important.  So much progress has been made in the past several years.

buffcody - (7/27/2014 - 9:42am)

Diagnosed with Stage IV 26 plus months ago with large tumor in lung.  Lobectomy removal 24 months ago.  Two brain tumors found 22 months ago.  Ipilimumab treatment begun 21 months ago along with SRS removal of tumors.  Small sub-cutaneous met removed 14 months ago.  No recurrence since.  I hope the good news continues.  And I hope you get some as time goes on as well.  Important to realize there is much reason for hope.

I was misdiagnosed for 3 1/2 years.  Went to Stage IV in March 2007.  Still here.

 

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

Bubbles - (7/22/2014 - 3:05pm)

Initial dx for mel in 2003...Stage IV in 2010. Now NED after brain, lung and tonsilar mets. I wish you my best! Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

So sorry about your new diagnoses.  At least the last few years have resulted in several new treatments for stage 4 melanoma.  There are so many positive stories on here of people doing great.

You can click on my name "sweetaugust" and it will lead you to my profile where you can read about my stage 4 melanoma that was diagnosed in Oct 2012.  I am doing fantastic and consider myself totally healthy now.  :)

Much luck to you!

Laurie