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
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RitaBa
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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,
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
Hi thanks for your experience, I am sure it is so useful to us CLL'ers, The main thing is that you take lots of care of yourself and stay safe. Yes we are truly blessed to have these treatment options.
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