Julia R
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A Big Fat Row of Zeros! by Julia Roberts, QVC Presenter and author

Julia R
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Updated 05 Sep 2018

QVC Presenter Julia Roberts tell us about her experience of Chronic Myeloid Leukaemia (CML)

Julia Roberts, QVC presenter and author

In April 2012 I had a 360 health check. Everything was normal except one of my blood tests results which the doctor on the day told me he was sending away for further analysis. Two days later I was at work at the television shopping channel QVC, preparing to go on air, when I received a phonecall from the doctor. He told me I needed to book an appointment to see a consultant haematologist as a matter of urgency. Four days later I was seen at UCLH. My white blood count was still on the rise so they did a bone marrow biopsy there and then to confirm the registrar's suspicion. Ten days later I met my consultant, Professor Anthony Goldstone, for the first time and he confirmed that I had chronic myeloid leukaemia. I wasn't shocked as I was pretty sure they wouldn't do bone marrow biopsies on a whim. I left the hospital that day armed with my oral chemotherapy drugs, drugs to help my kidneys and a list of emergency phone numbers in case I suffered severe side effects.

The first few weeks were a bit of a blur of hospital visits, blood tests, feeling incredibly tired but trying to carry on as normal at QVC as I felt I needed one aspect of my life to be constant. I had only told my direct boss about my diagnosis so that my shifts could be kept as short as possible thus enabling everything to appear as normal from my colleagues and the viewers at home points of view. I am quite a private person and I wanted to be sure that the Imatinib was working before I told people - no point worrying folk needlessly. The Imatinib was working although I was on quite a low dose as the normal dose had given me a blocked sensation in my oesophagus. We had a small scare in November 2012 when my bcr/abl numbers started to rise. I was fearful that I might have the mutation T3151 but it turned out that the dosage I was on was just too small to treat the CML. A slight increase was all that was needed to get me back on track. 

I was about to release my first book, a memoir of some of my life stories, called One Hundred Lengths of the Pool, and I added chapter 101, the story of my diagnosis as it was such a huge event in my life story which I didn't think would be right to leave out. The title of the book sparked the idea for a charity swimming gala in July 2013 to raise money for LLR and also for British Polio as I am a polio survivor. I had also had another idea around this time, to write a novel featuring a character with CML and to donate a percentage of my profits to LLR. Not only had they been very supportive for me but also a friend of mine from QVC. Stretch had AML and had been given the all clear following a transplant but it came back. If we were both at UCLH on the same days I would go and visit him. We lost Stretch in October 2013 a devastating blow for his girlfriend, family and me personally.

I continued on my special dosage of Imatinib and every bcr/abl test result continued in a downward direction but after almost three years I still hadn't reached complete molecular response. My professor suggested increasing the dosage to see if we could go the extra mile and achieve a row of zeros. Ten days after my latest bcr/abl I received another phone call at QVC just before I was on live TV. The increased dosage had worked, I had achieved a complete molecular response almost three years to the day after finding out I had CML. Funnily enough I was more emotional over that news than the original diagnosis. I know it is only the beginning of a new challenge to stay in remission and of course I am still taking the drugs but it is an incredible feeling and I am blessed to have had so much support from family, friends and so many QVC viewers.

The novel I started two years ago is finally ready for publication and I warn you now that the character with CML, Rosemary, is not as fortunate in her fight with the disease as me. I have dedicated 'Life's a Beach and Then...' to the memory of my friend Stretch.

If you would like to find out more about the symptoms, diagnosis and treatment of Chronic Myeloid Leukaemia (CML), visit the Bloodwise Information and Support section of our website.

Comments

14.05.2015

Julia,

This is absolutely fantastic news! As you say there is still a long road ahead but it is so, so good to hear that you're in remission and really admire how strong you've been throughout the process to date. You're an inspiraiton to all blood cancer patients.

Your description of feeling more emotion at the news you were in remission really rings true with me too - the day I realised that I no longer had CML (I underwent a bone marrow transplant) is one I'll never, ever forget. Funnily enough it's actually 11 years to the day that I underwent my bone marrow transplant so I'm in celebratory mood too!

Keep in touch and thanks so much for everything that you're doing - you're an inspiration to us all. Incidentally have you seen the CML UK Facebook group? It's run by CML patients for CML patients and I'm sure that they'd absolutely love to hear your news. Here's the link if you're interested: https://www.facebook.com/groups/cmluk/

Anonymous
14.05.2015

Hi Andy
Thanks for your kind words. As you must know it is the support of people around us that really helps the way that we cope with things. I have been blessed with a strong support network.
I am so grateful to charities like LLR for helping to fund research into the drugs that have made my treatment so much different from yours and that's why I'm determined to help in any small way I can.
I'm not good on Facebook but I will take a look at the link.

Anonymous
14.05.2015

well done Julia you are very brave

Anonymous
15.05.2015

Thank you

Anonymous
17.05.2015

Wow, Julia, this is fabulous new! I was diagnosed with AML in March 2012 and obviously you learn more about the different blood cancers whilst an in-patient. So when your diagnosis was announced, I was interested to read about CML and the treatment.
I am so pleased to hear that your treatment has been a success. It has made me smile. Remission is an important stage. If there wasn't a desk between the Doctor and myself when I was told, I would have hugged him!!
Best Wishes for your future.

Anonymous
17.05.2015

So pleased for you Julia, you have been amazing carrying on with working and living your life through all your treatment etc and all the hardwork of your medical team and your family in supporting you has paid off. Love and hugs. x

Anonymous
17.05.2015

Just realised I pressed send before I'd finished my post to you and it shows up as anonymous lol! So, here it is again.

So pleased for you Julia, you have been amazing carrying on with working and living your life through all your treatment etc and all the hardwork of your medical team and your family in supporting you has paid off. Love and hugs. :Chris x

Anonymous
17.05.2015

So happy for you Julia I used to sit and watch you on QVC and you seem such a lovely lady, my hubby has since been diagnosed with CML recently and luckily is doing well on his oral chemo so hope for a good future ahead for all of us x

Anonymous
19.05.2015

Hi Kate
I haven't seen my professor yet as I was given this momentous news over the phone. He may be in for a shock this Thursday!!
When I was diagnosed I remember them telling me that CML is the best one to get (if there is such a thing!) as it is the most treatable.
I hope things are still going well for you and glad my news made you smile.
Much love
Julia

Anonymous
19.05.2015

Hi Chris
I did exactly the same thing in responding to Mrs K above!
Thanks for your lovely comments - trying to carry on as normal as much as possible certainly helped me deal with the emotional side of things much better, although it was tough physically at times.
Thanks also for the love & hugs
Julia x

Anonymous
19.05.2015

Hello Lisa
I hope your husband continues to do well on his oral chemo and doesn't have too many side effects.
Good luck to you both for the future
Much love
Julia

Anonymous
10.06.2015

Hi Julie thank you you are an inspiring woman my 28 year old daughter has just been diagnosed with CML she is on Nilotinib and her WBC are coming down nicely hope one day she will be just like you and hit remission

Anonymous
28.06.2015

Dear Julia, Came across this page when browsing the web and coincidentally watching you on QVC. I am glad to read that you are in remission. My neice's 22 year old son in Australia was diagnosed with CML earlier this year and has been receiving chemo. He desperately needs a stem cell transplant and thankfully his 17 year old sister is a perfect match. So now he is going through more chemo and a lumbar puncture to make sure he is clear for the transplant can take place. I wish you continued good health for the future.

Anonymous
28.06.2015

Hello Natalie I'm sorry I haven't responded to this earlier but I've only just seen it. I'm sorry to hear about your daughter's diagnosis but pleased to hear that she is responding well to Nilotinib - let's hope that remission isn't too far away. Please give her my love xx

Anonymous
29.06.2015

Hello Dorothy
It must be difficult for you dealing with this long distance. The treatments have advanced so much over the last few years and if your niece's son needs inspiration he should check out what former Crystal Palace footballer Geoff Thomas is doing ten years on from his transplant. Geoff was a huge help to me at the beginning of my treatment and is about to embark on the Tour de France 1 day ahead to try and raise a million pounds for more research in to new treatment drugs. I am so pleased that your niece's son has a perfect match in his sister - Geoff's donor was also his sister.
I am just so grateful that my CML was caught early enough not to require such invasive treatment.
Please keep me posted with his progress
Love
Julia xx