my treatment has been delayed for a week my CT has shown an enlarged lymph node in my stomach so my treatment will be discussed and tweaked to ensure it goes as smoothly and successfully as possible.
Feeling a bit at sixes and sevens but still positive. Thankyou for all your comments and encouragement it is much appreciated. Hopefully the next time I post I’ll be on this journey that’s necessary even if not welcome.
Thankyou x
My treatment had to be postponed too as my neutrophils decided to crash to 0 just before I was about to start🙂
You will start soon but I get how you are feeling 🙄I cried the night it was cancelled, it's the build up towards the treatment and coming to peace with it.
Keep us posted.
Petra ❤
So many ups and downs with this disease. I have been treated 2x now and am currently on a maintenance dose of Venetoclax after finishing my 6 rounds of Obinutuzumab. Feeling good now with only some tummy troubles every so often! I have had different issues too especially in the beginning and those things can be hard to manage emotionally. Thank goodness for this site where we can voice our concerns to those you are in the know. Wishing you all the best!
Thankyou
Hi Hilo13,
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I've had sizeable nodes in my abdomen (around my bladder) each time I progressed. That made my CLL expert more cautious about the Venetoclax ramp up, since big nodes can be a reservoir for lots of B-lymphocytes, and if the nodes empty out suddenly and the Venetoclax kills most of them quickly it can lead to TLS.
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So your doctors may want to monitor you to see if the Obinutuzumab/Gazyva shrinks the node well before starting the Venetoclax / Venclexta and what your ALC / Lymph # is after that happens.
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In my case (2016- Venetoclax without Obin or Rituxan) the doctor decided to have me in hospital the evening before my first two doses (20 mg & 50 mg ) so I could have saline infusions & blood tests every 4 hours for a full day after that dose. This was to check for high minerals (uric acid, potassium, phosphates and calcium) that are the primary evidence of TLS. See this older risk assessment protocol for Venetoclax monotherapy: venclextahcp.com/cll/dosing...
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From a quick search of the current websites, it appears that approach is no longer being used and taking Obinutuzumab / Gazyva infusions for one month before starting Venetoclax is the standard approach- see:
venclexta.com/previously-un...
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Len
Thankyou do much for taking the time to give all thst information that seems to be the plan for me it’s much appreciated
What are sixes and sevens? Never heard that expression before.
it’s a Welsh thing 😂
Look up Cockney rhyming slang ! They are great. eg Rosie Lee is tea but most of the phrases get shortened - so it could be ‘ I will have a cup of Rosie ‘ can sometimes be confusing.
Colette
End of the road for PBS-available treaments for me.
Skin problems at the end of a clinical trial
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
Looking for a fifth line of CLL treatment
New and a Bit Scared
