Up in the air

IMG_1308Well I asked, practically begged Professor Gribben if the truth be told, to give me permission to take the children skiing in the Alps last week, their last in Europe with me prior to my 4th cycle of treatment.   He said, at this stage he couldn’t say no to me, and what a week we had in beautiful Courchevel.  It was perfect and all I had to do was remember to put a pill box in my pocket before I went off skiing for the day.  The fatigue has finally gone and all the fresh air did me a tremendous amount of good.    Who would have thought I could be having such serious treatment on the top of a mountain?   I hope this helps others who fear entering clinical trials…I have not felt this well for years.  It’s saying something when you have enough energy to wear a 9 year old boy out (see hilarious photo below)

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Tuesday was my 4th cycle of obinutuzimab and I was dreading it, particularly given how low I felt after the 3rd cycle but also because I am getting a bit over it all!   I suppose the better I’m feeling the more I’m starting to resent the fact that my life is on hold. I know I’m incredibly fortunate and I couldn’t be more grateful to be on this trial but I’ve now been here for 6 months and just want to get home.  It’s a funny rollercoaster of emotions having treatment.  I’m well enough now to just focus on getting back to Melbourne, my family, friends and work.  The day was long with a few hiccups as I’ve lost my trial nurse Sam (so sad!) and my bloodwork was identical to last month.  It’s all a sign that I’m having a good response to the treatment.   I’ll know more when I see the good Professor next week after an MRI scan (have managed to switch it from a CT) to see if there are any enlarged lymph nodes left where we can’t feel them.  I’m hopeful that there aren’t.

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I kissed my family goodbye yesterday and they’ve just landed back in Melbourne.  It’s time for the children to go back to school and I’m very thankful for the 9 weeks I’ve had with them here – something very positive after all the upheaval.   I’m hoping I might be able to get home immediately after the next cycle of treatment at the end of Feb to break up the gap for them, I don’t think we could cope with another long separation, but I will have to run that past the team at Barts – the 6th and final infusion is at the end of March so I need to be back here and well for that.  Then the monthly trips begin.

11 thoughts on “Up in the air

  1. Wow I love skiing ,too. I used to ski at Yosemete and China peak in central Calif. many southern Ca. People ski at Mamoth lakes . Some go as far as Brian head Utah. Skiing is a big sport here as well. Don’t know of any skiing in Australia. Have a safe flight home. Wish you didn’t have to go back every month. That’s a long flight. Maybe you can get your labs in Aussie. Good luck and thanks for all of the conversation.

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    1. Hi Sue I can’t remember if it was you or someone else who was trying to get their labs done locally in the US and were told they couldn’t. I’ll certainly be asking the question – my intention is to stay on the trial at Barts but, given the original monotherapy trial centre for venetoclax is my local hospital in Melbourne, maybe they can give me a slightly longer leash than 1 monthly visits to London. We shall see! Isn’t it a nice problem to have? I love this drug so much and am not so anxious to come off it anymore. Mt Buller is our skiing centre in Victoria – when there’s snow it’s fantastic!

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  2. Wonderful, well done post as usual Deb. Wouldn’t it be nice if, once your infusions are done, you could have your labs drawn in Melbourne and Skype your follow up visits with Dr. G? Maybe every other if not every one? Planting a seed… we live in modern times seems there is a compromise there.

    It seems fairly quickly our blood counts look relatively normal on this trial. Other than perhaps watching nodes shrink some more, we are left waiting for marrow biopsies to assess impact of the ABT where it matters most. Even though I just started ABT yesterday, I am already craving info on how well the ABT is impacting my marrow. I am looking forward to you getting your results… guessing in about 2 mos!

    Cheers, Wup

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    1. Thanks Wup yes I’m hoping a compromise may be made but I did sign up to a trial on the other side of the world so only have myself to blame if I’m not allowed to stay on the trial without the monthly visits. I’m just excited about going back to Australia next month, will have to take each month as it comes after that – in theory it’s monthly until Sept then I’m allowed to go to 3 monthly visits. If they could just pull forward the 3 monthly visits by a couple of months if I’m doing well that would make all the difference! I can’t wait for results either, Bone Marrow Biopsy is now booked for 29 March (1 week after cycle 6) – I imagine I’ll get those results at my appt on the 20 April. I’m so pleased you’re on this trial too x

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  3. You’re flying…. and although you really might be flying a hell of a lot just keep in your mind how far you’ve come. Hell of a journey you’re on or to be more precise it’s looking like an amazing journey that you’re on. 2016 looking fab for you. Go girl.

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    1. Thanks! Feeling so much happier and thinking I may get through this and see a bit of the world while I’m at it. Next stop Hong Kong in late Feb as Professor Gribben has given me permission to go home between cycles 5 and 6 and I’m doing a stopover there to break the journey. Can’t wait!

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  4. I am thrilled to read of your great progress in fighting CLL ! It’s a powerful photo to see you skiing with your family while recovering! Really powerful ! It gives me hope! I’ve reached out to NIH, paperwork in progress.

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    1. Barbara you are so lucky to have the NIH in the US – I know my friend Lynn absolutely sings its praises. The fact is that patients with blood cancer who join clinical trials survive longer than those who don’t so I’m keeping my fingers crossed for you. Thanks for your kind post. I’m feeling incredibly lucky in so many areas of my life.

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  5. Darling, you are an amazing woman who has battle this hideous disease with courage, strength and an incredible positive attitude. I can’t wait for your return to Australia to hold you in my arms. Xx

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