Day +9 – Wednesday
I skipped the blog yesterday because nothing is really happening…although I did twitch briefly before I fell asleep last night and woke up with a growing like pain in my right femur this morning and now a twinge in my upper left femur. I’m used to side effects with ibrutinib but they tend to be painful joints and random bruises so this is different and very minor but have been reported in trials as Cytokines rise which gives me hope my living drug is expanding as it should. I’m not sure when the reengineered T-Cells might start showing in my blood but I had a test on Monday and I hope I’ll get the results when I see Michael Dickinson on Friday morning. I was expecting heavy fatigue by now but I feel completely normal and would go back to work if I was allowed – instead I’m forcing myself to rest even though I don’t feel I need it.
The key date for me will be 20th October which is day +28 and I’ll have a bone marrow biopsy then to look for any traces of CLL. The results will be given two days later and I’m hoping they will show there is no detectable disease.
If things continue as they are, so boringly uneventful I’ll just update this every couple of days – next update will be after my appointment on Friday on Day +11. If something does happen that puts me back in hospital this will be updated by my sister so please don’t think no news is bad news.
Meanwhile I’m feeling better than I have in ages, not having the worry of preparing myself mentally for CAR-T has made a big difference and I’m so relieved. This is an interview I did with Director of Nursing Donna Gairns last week for Lymphoma Australia while I was in the Peter Mac which really explains how difficult the mental and emotional side of things has been so if you are heading down this path make sure you have someone on your medical team taking care of this side of things too.
Ooh just had lunch and noticed my jaw is now starting to hurt – I’m imagining those t-cells travelling around my bone marrow wiping out cancer cells throughout my body – how exciting!
abtandmedotcom 
“Can I have what she’s having!!”
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Hah – too true Mick! Gosh I hope this is the cure – would be a bit surreal if it is given the chemo was the hardest thing about it and most CLL patients still will have had that at some stage so know what to expect on that front. Fingers crossed. I chose correctly with ABT-199 – I just hope my good fortune extends to having been able to get this particular CAR-T even though it’s in a very early trial.
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Just watched the video – thanks again. Your insights into the mental and emotional issues are very helpful for lots of people I’m sure. Can you tell them they might need to get some easier neurotoxicity tests ready for oldies like me as I already commonly call glasses “things you look through to read” etc !
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So glad you posted! I’m stalking your blog and thinking positive thoughts for you. Thank you also for letting us know when you’ll post next, we were getting spoiled by daily posts!
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Hah sorry I could just blather on regardless on a daily basis because I’m pretty bored but honestly nothing to report so would literally be talking for the sake of it which I have been known to do! The bone pain is getting worse which is exciting – apparently the major production house for WBCs is in the leg bones so I’m taking it as a good sign!
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So happy to read things are going so well for you!!! Thank you for continuing to share your journey. Best of luck and looking forward to hearing about your appointment on Friday. Fingers crossed everything remains uneventful…except of course for the biggest event possible…no CLL in your bone marrow.
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