Dabrafenib is working

This topic has 33 replies, 7 voices, and was last updated 11 years, 1 month ago by jennyholden.

Post

- July 20, 2012 at 11:39 am
- Quote
AllyNTAus
Participant
Hi everyone, I just wanted to share a positive story about this BRAF inhibitor that I know some of you are also taking.

I have been on Dab for nearly 12 weeks, I failed entry to the BRAF/MEK inhibitor trial due to my lung condition at the time of assessment but GSK granted me compassionate access. When I started taking it, I was in need of steroids to allow me to breath properly, there were multiple small flat mucosal lesions in my lungs threatening to grow into tumors as well as one defined nodule of 4mm, and a number of my lymph nodes were significantly enlarged.

I had my first set of review scans today, and good results. All of the lymph nodes that were identified have decreased in size, eg one that was 16 x 40mm is now measuring 22 x 6mm, a 25 x 16mm is now 9 x 5mm, a 20 x 28mm is now 15 x 10mm (I won’t bore you with all the measurements but you get the idea). My lungs are described as”clear with no pulmonary nodule seen”. All my other organs remain clear (thankfully I hadn’t developed mets anywhere else before I started Dab).

I am so relieved to have this improvement within 12 weeks and can only hope it continues. Every moment more I get with my family especially my husband and little son is so precious. And I am so greatful to the scientists and doctors who have brought about this advance.

Hoping others of you find strength for your battles.
Ally

Viewing 22 reply threads

Replies

- - July 20, 2012 at 2:24 pm
  - Quote
  Erinmay22
  Participant
  Ally – so great to hear!
- - July 20, 2012 at 2:24 pm
  - Quote
  Erinmay22
  Participant
  Ally – so great to hear!
- - July 20, 2012 at 2:24 pm
  - Quote
  Erinmay22
  Participant
  Ally – so great to hear!
- - July 20, 2012 at 3:19 pm
  - Quote
  aldakota22
  Participant
  Very good news to share.Pray it only gets even better over traetment.Will keep you in my prayers.Beat the Beast. AL
- - July 20, 2012 at 3:19 pm
  - Quote
  aldakota22
  Participant
  Very good news to share.Pray it only gets even better over traetment.Will keep you in my prayers.Beat the Beast. AL
- - July 20, 2012 at 3:19 pm
  - Quote
  aldakota22
  Participant
  Very good news to share.Pray it only gets even better over traetment.Will keep you in my prayers.Beat the Beast. AL
- - July 20, 2012 at 4:14 pm
  - Quote
  Harry in Fair Oaks
  Participant
  Great news! I'm also on this drug as part of the GSK BRAF/MEK trial, and Dabrafenib probably is the part that's doing the "heavy lifting."
  
  Best wishes,
  
  Harry
- - July 20, 2012 at 4:14 pm
  - Quote
  Harry in Fair Oaks
  Participant
  Great news! I'm also on this drug as part of the GSK BRAF/MEK trial, and Dabrafenib probably is the part that's doing the "heavy lifting."
  
  Best wishes,
  
  Harry
- - July 20, 2012 at 4:14 pm
  - Quote
  Harry in Fair Oaks
  Participant
  Great news! I'm also on this drug as part of the GSK BRAF/MEK trial, and Dabrafenib probably is the part that's doing the "heavy lifting."
  
  Best wishes,
  
  Harry
  - July 21, 2012 at 5:54 am
    
    Quote
    AllyNTAus
    Participant
    
    Harry I reckon that’s right, I just wish I could get my hands on the MEK inhibitor as well because they seem to think that is impacting positively on durability of response, but maybe they will get the combo therapy onto the market in not too long.
    Best wishes to you too
  - July 21, 2012 at 5:54 am
    
    Quote
    AllyNTAus
    Participant
    
    Harry I reckon that’s right, I just wish I could get my hands on the MEK inhibitor as well because they seem to think that is impacting positively on durability of response, but maybe they will get the combo therapy onto the market in not too long.
    Best wishes to you too
  - July 21, 2012 at 5:54 am
    
    Quote
    AllyNTAus
    Participant
    
    Harry I reckon that’s right, I just wish I could get my hands on the MEK inhibitor as well because they seem to think that is impacting positively on durability of response, but maybe they will get the combo therapy onto the market in not too long.
    Best wishes to you too
- - July 20, 2012 at 6:24 pm
  - Quote
  KRob
  Participant
  Fantastic news! I had just read an article about Dabrafenib on Australia's Melanoma Institute site.
  
  Are you in the U.S. or abroad?
  
  Karen
- - July 20, 2012 at 6:24 pm
  - Quote
  KRob
  Participant
  Fantastic news! I had just read an article about Dabrafenib on Australia's Melanoma Institute site.
  
  Are you in the U.S. or abroad?
  
  Karen
  - July 21, 2012 at 5:50 am
    
    Quote
    AllyNTAus
    Participant
    
    Karen, I live in Darwin (Oz) but travel to Sydney every 4 weeks to see my doctor at Westmead Hospital and get my next months supply of the drug.
  - July 21, 2012 at 5:50 am
    
    Quote
    AllyNTAus
    Participant
    
    Karen, I live in Darwin (Oz) but travel to Sydney every 4 weeks to see my doctor at Westmead Hospital and get my next months supply of the drug.
  - July 21, 2012 at 5:50 am
    
    Quote
    AllyNTAus
    Participant
    
    Karen, I live in Darwin (Oz) but travel to Sydney every 4 weeks to see my doctor at Westmead Hospital and get my next months supply of the drug.
- - July 20, 2012 at 6:24 pm
  - Quote
  KRob
  Participant
  Fantastic news! I had just read an article about Dabrafenib on Australia's Melanoma Institute site.
  
  Are you in the U.S. or abroad?
  
  Karen
- - July 20, 2012 at 9:19 pm
  - Quote
  awillett1991
  Participant
  Thanks for the update – congrats on your good news! Praying it continues!
- - July 20, 2012 at 9:19 pm
  - Quote
  awillett1991
  Participant
  Thanks for the update – congrats on your good news! Praying it continues!
- - July 20, 2012 at 9:19 pm
  - Quote
  awillett1991
  Participant
  Thanks for the update – congrats on your good news! Praying it continues!
- - July 23, 2013 at 2:04 am
  - Quote
  jennyholden
  Participant
  Hi great news on the cancer reducing and fingers crossed for you. My husband has through his oncologist applied on compassionate grounds the use of dabrafenib it seems to be a waiting game can yourself or anyone reading this tell me how long it takes for the paper work to be approved through the Pharmaceutical company? we are holding our breath while the cancer is growing through the bones and lymph nodes.
- - July 23, 2013 at 2:04 am
  - Quote
  jennyholden
  Participant
  Hi great news on the cancer reducing and fingers crossed for you. My husband has through his oncologist applied on compassionate grounds the use of dabrafenib it seems to be a waiting game can yourself or anyone reading this tell me how long it takes for the paper work to be approved through the Pharmaceutical company? we are holding our breath while the cancer is growing through the bones and lymph nodes.
- - July 23, 2013 at 2:04 am
  - Quote
  jennyholden
  Participant
  Hi great news on the cancer reducing and fingers crossed for you. My husband has through his oncologist applied on compassionate grounds the use of dabrafenib it seems to be a waiting game can yourself or anyone reading this tell me how long it takes for the paper work to be approved through the Pharmaceutical company? we are holding our breath while the cancer is growing through the bones and lymph nodes.
- - July 23, 2013 at 2:05 am
  - Quote
  jennyholden
  Participant
  Hi great news on the cancer reducing and fingers crossed for you. My husband has through his oncologist applied on compassionate grounds the use of dabrafenib it seems to be a waiting game can yourself or anyone reading this tell me how long it takes for the paper work to be approved through the Pharmaceutical company? we are holding our breath while the cancer is growing through the bones and lymph nodes.
  
  we are in Brisbane Australia
- - July 23, 2013 at 2:05 am
  - Quote
  jennyholden
  Participant
  Hi great news on the cancer reducing and fingers crossed for you. My husband has through his oncologist applied on compassionate grounds the use of dabrafenib it seems to be a waiting game can yourself or anyone reading this tell me how long it takes for the paper work to be approved through the Pharmaceutical company? we are holding our breath while the cancer is growing through the bones and lymph nodes.
  
  we are in Brisbane Australia
- - July 23, 2013 at 2:05 am
  - Quote
  jennyholden
  Participant
  Hi great news on the cancer reducing and fingers crossed for you. My husband has through his oncologist applied on compassionate grounds the use of dabrafenib it seems to be a waiting game can yourself or anyone reading this tell me how long it takes for the paper work to be approved through the Pharmaceutical company? we are holding our breath while the cancer is growing through the bones and lymph nodes.
  
  we are in Brisbane Australia
- - July 23, 2013 at 11:08 am
  - Quote
  AllyNTAus
  Participant
  Jenny, in my case the approval was about two weeks if I remember correctly.
  Unfortunately Dabrafenib only kept working for me for about 10 months. I then spent a short period on a Novartis BRAF/MEK inhibitor trial but that also recently came to an end with some nasty progression of my disease, and I have just started Ipi (Yervoy). I am grateful that Dabrafenib bought me some time though, and got me to this point where Yervoy has just been PBS subsidised
- - July 24, 2013 at 12:59 am
  - Quote
  jennyholden
  Participant
  Thankyou for the prompt reply, my husband and I after 27 years of marriage felt it had all come to an end but your log of treatment that we will also journey on as well gives us that hope that we have time yet to follow our dreams. You are an inspiration and I wish your journey be trouble free with the disease regressing.
- - July 23, 2013 at 11:08 am
  - Quote
  AllyNTAus
  Participant
  Jenny, in my case the approval was about two weeks if I remember correctly.
  Unfortunately Dabrafenib only kept working for me for about 10 months. I then spent a short period on a Novartis BRAF/MEK inhibitor trial but that also recently came to an end with some nasty progression of my disease, and I have just started Ipi (Yervoy). I am grateful that Dabrafenib bought me some time though, and got me to this point where Yervoy has just been PBS subsidised
- - July 23, 2013 at 11:08 am
  - Quote
  AllyNTAus
  Participant
  Jenny, in my case the approval was about two weeks if I remember correctly.
  Unfortunately Dabrafenib only kept working for me for about 10 months. I then spent a short period on a Novartis BRAF/MEK inhibitor trial but that also recently came to an end with some nasty progression of my disease, and I have just started Ipi (Yervoy). I am grateful that Dabrafenib bought me some time though, and got me to this point where Yervoy has just been PBS subsidised
- - July 24, 2013 at 12:59 am
  - Quote
  jennyholden
  Participant
  Thankyou for the prompt reply, my husband and I after 27 years of marriage felt it had all come to an end but your log of treatment that we will also journey on as well gives us that hope that we have time yet to follow our dreams. You are an inspiration and I wish your journey be trouble free with the disease regressing.
- - July 24, 2013 at 12:59 am
  - Quote
  jennyholden
  Participant
  Thankyou for the prompt reply, my husband and I after 27 years of marriage felt it had all come to an end but your log of treatment that we will also journey on as well gives us that hope that we have time yet to follow our dreams. You are an inspiration and I wish your journey be trouble free with the disease regressing.