All quiet on the health front. I had my 24 month check up on the trial and I’m still MRD negative and bloods are all good – it’s very nice being a boring patient. Two years ago next week I tentatively took venetoclax for the first time and I still take 400mgs daily with no apparent side effects. I feel very very lucky to be on this miraculous drug which is approved here but not yet funded. Ibrutinib goes on the PBS in December and approximately 900 patients in Australia will now be able to access it which is fantastic news. Hopefully venetoclax won’t be far behind. In the meantime I’m continuing the campaign to try to get these drugs made more readily available for patients who need them. This week that campaign took me onto Sky News where I was interviewed by Andrew Bolt on the Bolt Report…a real highlight for me as I’m such a fan of his. Those who know my story may note the timeline is a bit truncated in this interview but I didn’t want to correct him when he said I was diagnosed two years ago so went with the flow – it also meant I shaved 4 years off my life and it’s nice to be 40 again! A couple of friends pointed out that I looked like I was paying homage to Hugh Heffner with my choice of outfit – oh well it was inadvertent but nothing like putting the sex into venclexta and Andrew actually mentions viagra briefly in the interview because I was interviewed on the young IPA podcast by his son James and pointed out that one of the benefits of patients trying new drugs can be unexpected positive side effects (such as a cure for male pattern baldness with ibrutinib and erectile dysfunction with viagra which was originally designed to be a heart medication).
This followed an Op Ed in the Herald Sun and my latest article in the Institute of Public Affairs IPA Review magazine.
Herald Sun Right To Try article
I’m feeling so well, working full time now and the children are thriving. I’m helping the Walter and Eliza Hall with their fundraising and had the honour of speaking to scientists there last month – it was great to see Professors David Vaux and Andrew Roberts in the audience – if not a little intimidating.
170525-Guide to Giving ad June 2017
Life is good and I don’t need to fly to London now until the first week in January so will be making the most of the warmer days here down under. Thanks for being with me on the journey!
4 thoughts on “Right to Try”
The best news. You fought hard for this and now you are fighting for others. Thank you for all that you are doing.
Will you be at ASH? I know you worked with CLLAN on our survey.
Can we talk in the next day or two?
Stay strong. We are all in this together.
Brian Koffman MDCM DCFP, DABFM, MS Ed
Founder and Medical Director, CLL Society Inc. http://cllsociety.org
PO Box 1390 Claremont, CA 91711
Wow you have been busy. My son was only just saying to me the other day “why can’t you sign a waiver to try these drugs”. Looks like you are all over it. Had no idea about this RTT in the US. Am sharing this on my FB page to help raise awareness. Thankyou Deborah. My husband is lucky enough to be on a trial here in Australia. Fingers crossed that one way or another venetoclax will be available to you here in Australia sooner rather than a decade or longer.
Dear mrs. Simms , dear Deborah ,
Great news for you and , as matter of fact , for all of us “colleague patients” !
I am also fortunate to be in a trial for Venetoclax , in combination for the first 6 months with Obinutuzumab. Now up to this 6th month the results are absolutely great , my docter , professor Arnon Kater of the AMC (Amsterdam University Hospital) earlier this month told me that if a colleague doctor was to examine my blood values and not know I am on this program , he /she would conclude this patient to be a normal healthy person !
Thinking about my possible contribution for patients in simular situations , but not so fortunate as you and me to be on a trials as ours , it could be to establish by law or otherwise – of course under circumstances to be established -this “right to try” you refer to .
I wil keep you ” posted ” should you be interested , please let me know .
In the past 8/9 months since I was admitted to prof. Kater’s program ( the Hovon 139 study ) your updates have been extremely encouraging, thank you very much for your “sharing ” a.o. via Patient Power , the website I first “encountered ” you.
About my (former ) professional background ( I retired from my lawpractise in 2013 ) , you can find some information on Linkedin.
Kind regards and above all : ” bon courage” ,
A.(Bram) de Feijter
Van Borsselenweg 4a 6862BJ Oosterbeek (NL)
You are taking this CLL bull by it’s horns, so great to see you thriving and taking all these opportunities to make a difference. Very inspiring Deb and it looks like you’re having fun. My favorites are your expressions at the end of the tv interview where your interviewer brought up viagra. LOL!