Husband Stage IV- BRAF MEK trial - any info?

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8/15/2010 12:09pm
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Replies: 12

HI All,

This is my first time posting, after lurking for a while..

My husband was diagnosed  Dec. 2008 with stage 3B after he had a mole removed on his chest, it had spread to 2 lymph nodes so further removed another 30 nodes in that side of his body. He did the high dose interferon and then was given a clean bill of health for almost a year.

June 2010 - we went to the emergency room because he had severe chest pain, and after a CT scan and x-ray they told us he had a soft tissue tumour in his upper left back area that was pressing on nerves and causing the chest pain. They also discovered 4 lytic lesions on various bones in his back and one in his jaw.

He tested Braf positive so our doc tried to get him into the Roche trial but he was "randomized" ( god i hate that word!) to the dacarbazine arm. He's done 2 cycles of that and he had scans on the 11th, the trail nurse said the scans show some progression. We see the doc tomorrow to hear the full story.

We also meet with a new doc tmo to see if he can get on the GSK Braf/Mek trial, which our current doc thinks is likely. (he reserved a place for him on the trial even before the 2nd cycle of dacarbazine)

Just wondering if anybody else out there is doing the combination trial? side effects? is it working?

Also any advice on how to fight the fatigue that comes with morphine? My husband is on 30mg slow release x 2 a day, with 5 mg for breakthrough ( which luckily he rarely needs to use), but he could sleep for 12- 14 hours every day.... or longer if i don't wake him up.

He's also seeing an integrative oncologist ( chines herbal medicine) who is a medical doctor just trained in chinese meds as well who has him on a herbal tinture that seems to be helping him. He doesn't look sick or feel sick, just major fatigue.

We also have cut out, gluten, sugar and cow dairy.

We're doing anything we can. He is so positive and convinced he's going to get better, it's just a matter of time and the right meds... i think sometimes i'm having a harder time dealing with it than he is... lol

Oh well... any and all advice or info appreciated.

thanks,

Emily

Hi Emily and welcome to the club nobody wants to be in. It sounds like you guys have really done your homework and your on the right path. I really like the idea of the chinese herbal medical oncologist, can you ask him to make him some Kombucha? It's chinese tea, been around for ages. Hopefully he already has some cuz it takes 30 days to make. It's out of stores right now cuz of legal/labeling issues, shoud be back soon. I believe it has helped bring my liver back into shape and so on, it's an immune booster. Anyway just wanted to say hi, keep fighting, there is always hope, atittude is everything  and keep posting. love, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Hi Emily,
I just wanted to offer some prayer and support. My husband just started the Roche trial this week and was also randomized to dacarbazine. I don't know if it is the chemotherapy, but fatigue is his greatest side effect. We'll be thinking of you.
JenC

Hi Emily,

I'm sorry to hear about your husband and hope he can get on the GSK Braf/Mek trial and that it helps him. Also, I hope the treatment he is having from the integrative oncologist helps.

I don't know how to fight fatigue that comes with morphine or any strong painkillers. Unfortunately that seems to be one of their side effects.

Janet 

Anonymous - (8/15/2010 - 2:41pm)

Hi,

I understand that the BRAF/MEK is so new there are no studies. The Braf/MEK combo trial is a phase 1 and will take time to gather the resuts. Safety & dosage escalation is needed to be analyzed in Phase 1 not to mention side effects. Anyone on this trial is brave because this is a " unknown"  COMBO.

Emily, who is your integrative oncologist and what city does he work from???? I have been looking for integrative oncologist in southern california for a long time. Anyone know of one? Is there a professional oraganization these types of doctors belong to???

I wish you great success with this trial. May your husband get NED quickly.

Hi,

We found our integrative oncologist through a recommend from our family doctor in NYC.

After meeting with him, doing some research and speaking with a few of his patients we decided to work with him.

Here is an article about one of his patients, who is still alive and cancer free.

http://www.medicinenet.com/script/main/art.asp?articlekey=50626

 

If you'd like his contact info I can pass it on, he will do phone consults if he can get a copy of your medical records.

you can email me at emily.pengelly@gmail.com

 

We're doing the BRAF/MEK trial on recommendation from our oncologist as he tells us it is showing similar promise to other BRAF trials.

fingers crossed.

 

Emily

 

Hi All,

So I thought i'd update you on our day with the doctors....

Turns out the chemo (dabarbazine) did not work. Big surprise :-( the bone lesions have all grown in size but only by about 15% in 2 months and no new sites, which i'm taking as positive.

Turns out the study they want to put him in is :http://clinicaltrials.gov/ct2/show/NCT01155453

And he will be the 4th person in the world to try this drug combo. We start on Sept 3rd. Fingers, toes and quite frankly everyhting else is crossed.

They going to radiate some of the lytic lesions to reduce the pain. Any one else had bone lesions radiated? Any side effects i should be expecting?

will keep you posted on results.

thanks for listening.

 

Emily

 

 

hi there,

 

sorry to hear about your husband.

 

please tell me where the braf mek trial is going on...locations...any locations, btw.

 

thanks, and good luck to him.

 

best,

 

patricia

I am sorry that you guys are in the position you are in.  It seems like you guys have plenty of ammo and are approaching things with a great attitude and energy. I'm glad that you posted because I think a lot of people including myself can learn from your situation and also feed off of your positive approach and positive energy. 

I posted on this topic in another thread from this site, but at the risk of repeating, I am Stage IV melanoma in lymph nodes and shoulder, including metastises to the bone. I am on the BRAF-MEK trial at MDAnderson. First 2 month cycle showed all tumors shrunk between 10% and 50%. Virtually no side effects, except for fatigue, neck rashes, and ringing in my ears. Compared to other treatment, the results have been fantastic and the side effects minimal. Second cycle up at the end of March and I'll head to Houston for three days of tests, scans, etc. The trial has given me a ton of hope, and the folks at MDAnderson are the absolute best. Good luck...there are amazing things coming!

Thanks so much for posting - I just started BRAF-MEk myself at Moffit and was wondering about side effects and how long it took for the sites to shrink.    I am excited for you!  Please keep posting - Here's hoping your next set of scans are BEAUTIFUL!

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

Greetings from Australia. My husband was diagnosed with Stage 4 MMM in late August 2010 and given an extremely poor prognosis. He was accepted into the GSK BRAF trial which had great results until Jan/Feb when 2 out 5 of his tumours started to increase in size after initally shrinking. He was then commenced on the combo BRAF/MEK trial which he started about 6 weeks ago. Not sure how this trial is going, after having no side affects at all at the commencement  he has lately been feeling very unwell - extreme fatigue (which may be from the pain relief drugs), nausea and pain. He needs pain relief at all times. He is not due for CT scans for another couple of weeks - this will be the thing that tells us whats going on. Fingers crossed for good results.

Emily and others, 

I think I found the same club here.  My husband's cancer came back late August as stage 4.  We decided on the Roche BRAF trial also and got the news that we got dacarbazine.  Argh, so frustrating.  For us, dacarbazine has worked!  After 6 months of that awful dacarbizine, all 35 of his tumors (mostly all in the sub-q) are gone!  We don't know how long they'll be gone for...but, we're enjoying the break from chemo.  That chemo. is still having effects on my husband - fatigue, "chemo-brain" and then he is having major problems with his eye (no cancer found there, but no doctor knows what is causing his eye severe pain).  

My husband is the same so positive and I'm the one who probably worries more.  We have also cut out sugar and red meat...  

I don't have any advice on the new GSK trial, but we had been looking into that when we got randomized to chemo.  Let us know how it goes if you decide on that.  We'd be interested.  

Just thought I had to respond since so you and so many on this comment thread had similarities.  Good luck to you all as we care for our wonderful husbands.