Great News

This topic has 27 replies, 7 voices, and was last updated 10 years, 6 months ago by Lisa – Aust.

Post

- October 16, 2013 at 4:13 pm
- Quote
Lisa – Aust
Participant
Hi Everyone,

Just wanted to come and share some great news we received today.

My husband Craig has been waiting to start the Merck PD1 trial for just over 2 months. He had been travelling along really well on Dabrafenib for 2.5 years when all of a sudden one of the nodes he originally had popped up again – measuring 3.5 cm.

Despite him 'timing things well' with regards to his reoccurance, a couple of delays with the trial over here in Perth meant that he has essentially been off any treatment for around 9 weeks. We went to see the Onc today to find out his randomisation and discuss the results of his baseline scan from last week.

As you can imagine, despite it not having any bearing on starting the trial, we were still very anxious about the results. As many of you know, Melanoma is so unpredictable, and being off treatment for such a long period of time – well I dont need to explain what we were worried about.

So you can imagine out shock, surprise and disbelief when the Onc told us that his tumour has shrunk by over 1 cm during this time on no treatment, and no other tumours have popped up. I have heard of spontaneous regression – but never thought it would happen to Craig.

He has stumped his very clever Oncologist and we are obviously still trying to let it sink and and are thanking our lucky stars. After 6 years of dealing with Mel – it was nice to catch a bit of a break today.

To top off the great day, we found out he has been randomised to the pd1 drug every 2 weeks. He is first in WA on this trial and was first on the GSK dabrafenib trial too, 2 and a half years ago. Like I said, he has timed his 2 reoccurances particularly well! Fingers crossed the drug takes care of the rest of that little sucker.

Well, just wanted to share and maybe provide some hope to others out there fighting.

All the best

Lisa x

Viewing 14 reply threads

Replies

- - October 16, 2013 at 11:35 pm
  - Quote
  hbecker
  Participant
  Lisa – so glad to hear your good news!! Please keep us posted on Craig's progress.
  
  Best –
  
  Hazel
- - October 16, 2013 at 11:35 pm
  - Quote
  hbecker
  Participant
  Lisa – so glad to hear your good news!! Please keep us posted on Craig's progress.
  
  Best –
  
  Hazel
- - October 16, 2013 at 11:35 pm
  - Quote
  hbecker
  Participant
  Lisa – so glad to hear your good news!! Please keep us posted on Craig's progress.
  
  Best –
  
  Hazel
- - October 17, 2013 at 1:17 am
  - Quote
  aldakota22
  Participant
  Happy to see the good news.Thank God the treatments seem to time out just right for Craig..May you both continue with only positive results.Beat the Beast. Al
- - October 17, 2013 at 1:17 am
  - Quote
  aldakota22
  Participant
  Happy to see the good news.Thank God the treatments seem to time out just right for Craig..May you both continue with only positive results.Beat the Beast. Al
- - October 17, 2013 at 1:17 am
  - Quote
  aldakota22
  Participant
  Happy to see the good news.Thank God the treatments seem to time out just right for Craig..May you both continue with only positive results.Beat the Beast. Al
- - October 17, 2013 at 2:47 am
  - Quote
  Tina D
  Participant
  Wow! I can imagine your joy and surprise!! Great news all the way around this time 🙂
  
  Tina
  - October 17, 2013 at 5:14 am
    
    Quote
    deardad
    Participant
    
    That is just wonderful news Lisa. Enjoy life and celebrate, sounds like Craig is one lucky man.
    
    All the best
    
    Nahmi from Melbourne
  - October 17, 2013 at 5:14 am
    
    Quote
    deardad
    Participant
    
    That is just wonderful news Lisa. Enjoy life and celebrate, sounds like Craig is one lucky man.
    
    All the best
    
    Nahmi from Melbourne
  - October 17, 2013 at 5:14 am
    
    Quote
    deardad
    Participant
    
    That is just wonderful news Lisa. Enjoy life and celebrate, sounds like Craig is one lucky man.
    
    All the best
    
    Nahmi from Melbourne
- - October 17, 2013 at 2:47 am
  - Quote
  Tina D
  Participant
  Wow! I can imagine your joy and surprise!! Great news all the way around this time 🙂
  
  Tina
- - October 17, 2013 at 2:47 am
  - Quote
  Tina D
  Participant
  Wow! I can imagine your joy and surprise!! Great news all the way around this time 🙂
  
  Tina
- - October 17, 2013 at 7:55 am
  - Quote
  tasjacques
  Participant
  Hi Lisa,
  
  indeed talking about time!!! That is so great for both of you, so very happy for you.
  
  Elenise
- - October 17, 2013 at 7:55 am
  - Quote
  tasjacques
  Participant
  Hi Lisa,
  
  indeed talking about time!!! That is so great for both of you, so very happy for you.
  
  Elenise
- - October 17, 2013 at 7:55 am
  - Quote
  tasjacques
  Participant
  Hi Lisa,
  
  indeed talking about time!!! That is so great for both of you, so very happy for you.
  
  Elenise
  - October 19, 2013 at 11:39 am
    
    Quote
    Lisa – Aust
    Participant
    
    Thanks everyone for the replies and well wishes
  - October 19, 2013 at 11:39 am
    
    Quote
    Lisa – Aust
    Participant
    
    Thanks everyone for the replies and well wishes
  - October 19, 2013 at 11:39 am
    
    Quote
    Lisa – Aust
    Participant
    
    Thanks everyone for the replies and well wishes
- - October 18, 2013 at 7:02 pm
  - Quote
  potidaean
  Participant
  Congratulations on the great news!
  
  Scientists have found that in some cases, the tumor becomes "addicted" to the BRAF inhibitor. I know, it's very weird, but it happens – and sounds like your husband was one of the lucky ones. Basically, the drug keeps the BRAF activity down (let's say it cuts it down from a 10 to a 2), but over the years, the BRAF activity rises within the tumor (let's say a total level of 18, but because the drug stops 8 of it, the net balance is 10), causing it to regrow. What happens is that once you go off drug, it releases the whole bunch of BRAF activity at once (total level of 18) which actually turns out to be too toxic for the tumor, so it starts shrinking .
  
  One idea that's out there is that, if the tumor ever starts re-growing yet again, it might still be responsive to BRAF inhibitor, because the "level 18" cells have died and it leaves behind some "level 10" cells which now re-grow in the absense of drug, and which should still be sensitive to it. This is why there are clinical trials out there with 2-weeks-on, 2-weeks-off regimens, trying to make use of this idea. You might want to discuss with your oncologist the possibility of trying dabrafenib again, should the tumor ever regrow (hopefully not, of course!).
- - October 18, 2013 at 7:02 pm
  - Quote
  potidaean
  Participant
  Congratulations on the great news!
  
  Scientists have found that in some cases, the tumor becomes "addicted" to the BRAF inhibitor. I know, it's very weird, but it happens – and sounds like your husband was one of the lucky ones. Basically, the drug keeps the BRAF activity down (let's say it cuts it down from a 10 to a 2), but over the years, the BRAF activity rises within the tumor (let's say a total level of 18, but because the drug stops 8 of it, the net balance is 10), causing it to regrow. What happens is that once you go off drug, it releases the whole bunch of BRAF activity at once (total level of 18) which actually turns out to be too toxic for the tumor, so it starts shrinking .
  
  One idea that's out there is that, if the tumor ever starts re-growing yet again, it might still be responsive to BRAF inhibitor, because the "level 18" cells have died and it leaves behind some "level 10" cells which now re-grow in the absense of drug, and which should still be sensitive to it. This is why there are clinical trials out there with 2-weeks-on, 2-weeks-off regimens, trying to make use of this idea. You might want to discuss with your oncologist the possibility of trying dabrafenib again, should the tumor ever regrow (hopefully not, of course!).
  - October 19, 2013 at 11:38 am
    
    Quote
    Lisa – Aust
    Participant
    
    Hi – thanks for the reply and explanation!
    
    We had a good discussion with the Onc about why this may have happened, and he did explain something about the resistance etc and why it may have happened (I think I had tuned out a little bit in disbelief at this point tho!). Funnily enough, the first thing I asked was – should he go back on the dabrafenib, but he said no, as there was a definite acceleration whilst on it.
    
    He is happy for him to still go ahead with the pd 1 trial at the moment, but it is defintely good to know that a braf inhibitor may work for him again in the future. Our onc also mentioned there will be a whole new 'batch' of braf inhibitors emerging soon – so that is great to hear also.
    
    Thank you so much for explaining that 🙂
  - October 19, 2013 at 11:38 am
    
    Quote
    Lisa – Aust
    Participant
    
    Hi – thanks for the reply and explanation!
    
    We had a good discussion with the Onc about why this may have happened, and he did explain something about the resistance etc and why it may have happened (I think I had tuned out a little bit in disbelief at this point tho!). Funnily enough, the first thing I asked was – should he go back on the dabrafenib, but he said no, as there was a definite acceleration whilst on it.
    
    He is happy for him to still go ahead with the pd 1 trial at the moment, but it is defintely good to know that a braf inhibitor may work for him again in the future. Our onc also mentioned there will be a whole new 'batch' of braf inhibitors emerging soon – so that is great to hear also.
    
    Thank you so much for explaining that 🙂
  - October 19, 2013 at 11:41 am
    
    Quote
    Lisa – Aust
    Participant
    
    PS would you have any articles/info you could steer me towards regarding this??
    
    Thanks again
    
    Lisa
  - October 19, 2013 at 11:41 am
    
    Quote
    Lisa – Aust
    Participant
    
    PS would you have any articles/info you could steer me towards regarding this??
    
    Thanks again
    
    Lisa
  - October 19, 2013 at 11:41 am
    
    Quote
    Lisa – Aust
    Participant
    
    PS would you have any articles/info you could steer me towards regarding this??
    
    Thanks again
    
    Lisa
  - October 19, 2013 at 11:38 am
    
    Quote
    Lisa – Aust
    Participant
    
    Hi – thanks for the reply and explanation!
    
    We had a good discussion with the Onc about why this may have happened, and he did explain something about the resistance etc and why it may have happened (I think I had tuned out a little bit in disbelief at this point tho!). Funnily enough, the first thing I asked was – should he go back on the dabrafenib, but he said no, as there was a definite acceleration whilst on it.
    
    He is happy for him to still go ahead with the pd 1 trial at the moment, but it is defintely good to know that a braf inhibitor may work for him again in the future. Our onc also mentioned there will be a whole new 'batch' of braf inhibitors emerging soon – so that is great to hear also.
    
    Thank you so much for explaining that 🙂
- - October 18, 2013 at 7:02 pm
  - Quote
  potidaean
  Participant
  Congratulations on the great news!
  
  Scientists have found that in some cases, the tumor becomes "addicted" to the BRAF inhibitor. I know, it's very weird, but it happens – and sounds like your husband was one of the lucky ones. Basically, the drug keeps the BRAF activity down (let's say it cuts it down from a 10 to a 2), but over the years, the BRAF activity rises within the tumor (let's say a total level of 18, but because the drug stops 8 of it, the net balance is 10), causing it to regrow. What happens is that once you go off drug, it releases the whole bunch of BRAF activity at once (total level of 18) which actually turns out to be too toxic for the tumor, so it starts shrinking .
  
  One idea that's out there is that, if the tumor ever starts re-growing yet again, it might still be responsive to BRAF inhibitor, because the "level 18" cells have died and it leaves behind some "level 10" cells which now re-grow in the absense of drug, and which should still be sensitive to it. This is why there are clinical trials out there with 2-weeks-on, 2-weeks-off regimens, trying to make use of this idea. You might want to discuss with your oncologist the possibility of trying dabrafenib again, should the tumor ever regrow (hopefully not, of course!).