Well it was the third weekly dose escalation of venetoclax this week and I didn’t know what to expect.   The great news was I just had to report for my blood test at 8am on Tuesday, no overnight hospital hydration this week and, as it turned out, I got to spend most of the day outside just returning for protocol observations and a couple of blood tests at 4 hours and 8 hours post taking the 100mg pill – and what a big pill it is.  The 100mg pill is a slightly different colour yet again and doesn’t actually fit in my pill box so time to upgrade.

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I’ll be taking four of these a day with breakfast in two weeks time but for now it’s just the one and I’m happy to say there was no reaction, other than that induced by my restless night the night before.  I was dreading going on the drip again, my arm is still sore from last week, and I had to resist the urge to hug my nurse Sam when he told me it wasn’t required and just to keep drinking the amount of water I’ve been drinking.  I’m trying to get through at least 3 and a half litres a day.   Others have reported headaches at this dose and stomach upsets so I’m hoping taking the pill with a good meal and drinking lots of water will head that off and two days in that seems to be doing the trick.   I had another blood test yesterday which showed all my bloods are in the normal range so I’m off out and about doing lots of Christmas things with the kids – ice skating, panto, lots of theatre and shopping and I’m making up for lost time with some special Mummy and me days.

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I honestly had no idea I would be feeling this well at this stage in the trial.  I really hope the worst is behind me.  I won’t kid you those last 2 weeks were pretty intense but they were the only bad part of it and knowing that it was a temporary thing helped me get through it.   Venetoclax does have to be handled carefully in the early days when tumour lysis is an issue but the danger of that seems to be over for me now and the drug is certainly worth it.   One of the first brave patients to take ABT-199 four years ago said to me “imagine taking a pill every morning, having no side effects, the cancer is kept at bay and you get on with your life” that’s been his experience with the drug and he’s still in remission.  I’m hoping the combination therapy may also lead to a deeper remission and not having to stay on the drug indefinitely.   I’ll explain Minimum Residual Disease at some stage.

Meanwhile Sam has stopped saying “just a wee scratch” before he takes my blood to stop me flinching as those 2 hourly blood tests have left an indelible mark.  Get that PICC line people would be my recommendation…I wish I hadn’t had such an ordeal getting mine put in – I think, on reflection, I should have persevered, it would have made the past fortnight less of an ordeal (and I know Aunty Lynn and Aunty Pat, my friends from CLL Forum who’ve been on their own trials did tell me to get one!).  Will add a series of videos to the blog tomorrow courtesy of my friend Charlie from Patient Power who has just got back from the American Society of Haematology meeting in Orlando where there has been great news about Venetoclax.  It is an exciting time for all of us.

 

8 thoughts on “We’re gonna need a bigger pill box

  1. The news on venetoclax was amazing at ASH and it should be approved next year in the USA. Learned at ASH that clinical TLS seems to be no longer a problem with the new slow dosing build-up, lab and hydration protocols, though lab abnormalities can occur and need care. Had a nice visit with Charlie at ASH but we never found the time to shoot a short video on our meeting in San Diego. Enjoy the Christmas season with the kids. We are celebrating Hannukah with our granddaughter.

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  2. Another fab blog sis, let me know what pill box you decide on…it better be sparkly! To think that 3 weeks ago all of this was the unknown, and now here you are fitter and more active than me on a good day! So proud of you and thankful you have been given this opportunity. Enjoy every second of this special time with your three amigos. I think Christmas is going to be one hell of a celebration this year. Love you so much xxx

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  3. Thank you for your blog, you are inspiring! I was diagnosed March 2015 and in ww. I’m rethinking clinical trials now when it comes time for treatment! Best wishes for a Merry Christmas with your family.

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    1. Thanks Barbara, the great thing about trials is you get what will probably be the best treatment years before it is approved and funded – all the evidence shows patients who go on trials live longer than those who don’t. Having said that I hope you’re like many with our disease who can enjoy a long watch and wait and perhaps never need treatment, and if you do, dare I say a cure may be out there by that time. Thanks again for the comment, it really is appreciated. Best wishes Deborah

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  4. Hi Deb
    I’m looking at my flow test result, that I get every month, if you get them, would like to compare, especially as abt dose is escalated. If you have the time look at cll forum guys and gals Gayza thread, I show some of my results of my flow test, you might find interesting.

    Good Luck, and the race continues

    Dave

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