Today was week 2 & I had my second 1000 ml transfusion of Obinutuzumab.
It is 11 .30 pm U.K. time ; I am still up and have energy despite having spent 8+ hours in hospital today.
I then came home , cooked , cleaned and washed up , relaxed a bit, messaged friends .....
I didn’t need a blood transfusion (last week I needed 2 packets ) this time as my haemoglobin was showing slight improvement and even my liver markers have improved remarkably.
I have spent many years trying to delay treatment for my CLL using natural remedies.
I was scared of the side effects of treatment and worried about future options.
It has been extremely hard work doing all the juices and raw food etc
I must say that this Obinutuzumab and Venetoclax ( which I will start in my Week 4) could indeed be a miraculous treatment for CLL 🙏
We are truly blessed to have these treatment options.
Rita
Hi and well done. You are amazing cooking cleaning etc after another long dose of O! I am so pleased for you and that it is all going so well. I think I start same treatment in Kent in 2 weeks. Scared and worried as well but hearing your experience really really helps. Very best wishes for the coming weeks I will be thinking of you. Keep posting! Lots of luck. Patrick
Patrick, as my kind fello CLL’ers had told me : the most important thing is to call the nurses immediately if you start feeling a reaction like tightness in chest / temperature going up / clammy ...... then they would slow down the transfusion and hopefully minimise the side effects .
Best wishes to you and please do post so we know how you get on,
Rita
Thanks Rita you are so right and I will follow your advice. Thanks for your support I love this forum so many good people all trying to do their best in the face of this bloody disease and happy to share their experiences and advice. I have learnt so much from the forum compared to so little from my consultant!! I will keep posting when I start O&V. Very best wishes. Patrick
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