About me:

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Diagnosed at 38 a few days before Christmas 2011 with my then 2 year old daughter on my lap, I was told I had Chronic Lymphocytic Leukaemia (CLL), an incurable disease where the average patient with my prognostic markers could expect to live for 5 years.  The average patient, however, was a 70 year old man.  A year later I became so sick I required treatment and had 3 cycles of a chemotherapy known as FCR.    My remission only lasted 6 months and it looked very much as if I was going to have to have an allogeneic transplant using stem cells from a donor to save my life.  This is a difficult treatment and, while, if it works the benefits are long term control of the disease, the risks are high and mortality rates and quality of life issues made this something I wasn’t ready for.   I began a global search for an experimental treatment after realising that my options in Australia were limited.   In November 2015 I began a clinical trial at Barts Hospital in London of two drugs which have not been used in combination before – one of these is ABT-199, now known as Venetoclax, which was ironically invented in my adopted hometown of Melbourne.  I feel very privileged and grateful to be on this trial and this blog is designed to help other patients who may choose this path down the track.   It will be a bit technical for my non amateur haematologist friends but the CLLers it’s aimed at will understand.

7 thoughts on “If at first you don’t succeed trial, trial and trial again

  1. A wonderful idea to write this blog Darling for all who have travelled this journey with you and those who have just joined. Xx

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    1. Dear Debbie, I’m very intrigued with your blog and wish you good fortune and health. I’m about 2 and half years ahead of you. I was the first patient in the combination trial known as Abt. 199- Obinatumazab trial at UCSD,Lojolla , Ca. With Dr. kipps. I started at 25 mg and escalated to 100 mg within 3months . After a year I was escalated to 200 mg and finally 400 mg which I suspect will be the gold standard. I was Dx at 63 and am now 72. All of my tumor burden is below 2 cm. my history was very similar to yours. I failed FCR and with several somewhat unsuccessful treatments ended up in the Abt.199- Gazyva trial. My side effects were ver similar to yours except I spent 5 days in the hospital requiring heart monitoring , lots of hydration and the implementation of the picc for 3 months. I also had minor TLS and a small reaction the first day of Obinutumuzab . I have been visiting UCSD every 3 months for the time period. I had my secon CT scan in two year in Nov. Everthing looks fine in all major systems . I’ve had GI problems since diagnosis and seems to be my only big side effect . I have diarrhea within 2 hours of taking the pills which puts a slight damper on my activities. I’m retired so that’s lucky but I like to play golf several times a week and Pilates on my off days. My other dilemma is numbness resembling neuropathy from my knees down and very cold and sore feet, which arrived after my FCR treatment. After a day on my feet, I’m very tired. I just happily celebrated Christmas with my 3 daughters their husbands and my six grandchildren. The oldest just graduated from USC. As we are a traditional family who support education, all of our gchildren are college bound. I was a teacher and my husband flew fighter jets for the Marine Corps as well as retired from Ratheon-Hughes aircraft . Yes, he went to Vietnam . Soon we will be married 50 years, a truly amazing feat these days.Boy, do I feel old? Throughout all, I have never been depressed or thought about giving up. I recently realized I’m against euthanasia. Our major weakness is too much wine. Yes, you too and the others will get through this. It’s one more challenge life has to offer, the next frosting on the cake. Best of health to all who read this. By the way, I too am unmutated ,which I think is a key component to recovery in this disease.
      Merry Christmas and a Happy New Year.

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      1. Thanks Susan, it’s been wonderful to follow your story on the CLL Forum – you were one of the reasons I chased this trial so much so thank you for sharing too (and being one of the first to take the plunge). 50 years of marriage wow that’s amazing, congratulations. I haven’t had any of the gastric side effects others have reported just low level fatigue but maybe it’s good that I’m forced to slow down occasionally! Happy New Year – I hope 2016 brings us closer to a cure of this disease. Best wishes, Deb

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  2. I have been reading your blog with interest. I too was diagnosed in 2011 (Oct) but slightly older at age 50. I started the same trial on 2nd February 2015 at the Hope Unit in Leicester, as the first treatment naive patient in the UK. I’d also been reading Randy’s blog and had been following the progress of GDC0199 then known as ABT199 for a few years. Good luck in your journey and many good wishes for a wonderful Christmas with your young family. I am a Deborah too! Quite a few similarities!! Debbie x

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  3. Hello Deborah, I am a subject in the ABT199/rituximab study. I was diagnosed in 2010 and I started the clinical trial in 2013. I completed the trial with Complete Remission and MRD negative in bone marrow. I stopped the drug in June 2015 with reservations, but I hate to take a drug with no understanding of long term effects if is not necessary. Of course the big question now is, will it come back? Should I have stayed on the drug? I am still in CR based on blood flow cytometry tests. I am not doing CT scans now because I have not noticed any nodes palpation. I am on pins and needles before each of my quarterly appointments. The plan is that I will start the ABT199 therapy if/when the CLL resurfaces. It is nice to discover another person living the experience! I am so grateful that I was able to join the clinical trial! I will keep track of your blog now. Thanks, Kathy

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