I was diagnosed with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) 19 years ago with wait and watch stage (del 13q). I only have high number of white blood cell and no other symptoms.
Recently, my lymph nodes became so big within a short period. My hematologist advised me to start targeted therapy.
I need to have 6 cycles of Obinutuzumab and this December will be my last infusion. For my case, there are no side effects for Obinutuzumab at all. My white blood cell became normal in the first week infusions. As I didn’t know that the effect is so quick and my immune system dropped accordingly, unfortunately, I was diagnosed with Campylobacter and I had to overcome it for 2 months. I was advised not to eat anything raw or uncooked. No more sashimi or salad. The good side is my lymph nodes become very small now(very effective).
Venetoclax is a bit difficult for me. I ramped up to 400mg and since my Neutrophil had once came down to 0.9. I was asked to receive white blood cell shot to boost up. I was even asked to lower my Venetoclax to 300mg for a month in November.
This month, I was advised to take the normal dosage of 400g again but my Neutrophil drops again. I also have a problem with my digestive system. After taking Venetoclax, within a few hour, my stomach will be stuck with gas and become painful. The pain goes down to the intestines, then to the abdomen. Finally, diarrhea. It happened nearly everyday which is quite annoying. However, in comparing with other patients in this Forum, maybe it’s very minor. I just want to know if there’s anyone who has similar situation as mine. I have itchy skins of my upper body, too.
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Hi there @Gracekelly, and welcome to the Forum - I’m glad you found us.
Thanks so much for sharing all of this, it sounds like you’ve had a lot to deal with in a short space of time, especially after so many years on watch and wait/active monitoring.
Although my own treatment was for Hodgkin lymphoma rather than Chronic lymphocytic leukaemia (CLL), I did experience significant neutropenia during chemo and had to self-administer G-CSF injections after each cycle to boost neutrophils. I remember how draining that rollercoaster of ‘up and down counts’ can be.
You’re definitely not alone in some of what you describe, and if you scroll to the bottom of this page, you’ll also see a ‘Related Topics’ section, which can suggest other Forum threads you might find useful (though your mileage may vary, as this is an automatedfeature). In the meantime, these threads might be helpful:
• Venetoclax with obinutuzumab for CLL
• I have just started treatment of Venetoclax and Obinutuzumab for CLL
You also mentioned itching, which we know can be SO frustrating. Our Blood Cancer UK page on itching has some clear, practical information that might come in handy.
I hope other Forum members who’ve been through a similar experiences (even if the details differ) will add their thoughts too. And if you’d ever like to talk things through one-to-one, our Support Line is there on 0808 2080 888.
Take care,
Ceri - Blood Cancer UK Support Services
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Hello @Gracekelly
Welcome to the forum, its lovely you feel comfortable reaching out and discussing your Chronic lymphocytic leukaemia (CLL) with others
I am also a Chronic lymphocytic leukaemia (CLL) patient - diagnosed in April this year and I am now on active monitoring. I read your post with interest as you and I share the same condition, albeit you are a number of years into the journey, and therefore I cannot relate to the experiences you’re having. That having been said, i do hope you stay in touch and let us know how you get on with everything, and I hope you find comfort in chatting with everyone on the forum
Take good care
Mike
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