I have my first consultant meeting since starting treatment. Can anyone help me by letting me know what blood test numbers are key for me to monitor. I guess lymphocytes is the key one.
I’m on Imbrutinib. It’s been three weeks and so far quite manageable. Bit of tummy trouble and a few mouth ulcers but all manageable
Thank you for your help
I'm really interested in any replies that you get. I am 76 years old and begin Ibrutinib on Thursday. I'm desperately hoping that it reduces my lymph nodes.
Just to wish you the very best of luck. Mine have certainly reduced but my health situation isn’t typical.
Hiya. Just wondered how it was going for you.
I’ve had a few side effects but nothing I can’t tolerate.
Start ventoclax in a few weeks. Only a year to go.
Martin
Hi Martin. I don't want to tempt fate but it is going quite well. I am 3 weeks in to Ibrutinib and am having no serious side effects so far. My lymph nodes are shrinking, and I seem to have more energy when out walking up slopes. I still need to rest a lot. The main side effects has been to my skin, initially it was platelets rash and now some bruising. I did have a horrific emergency in the first week as a result of the antibiotics accompanying Ibrutinib which resulted in hospitalisation but thank goodness I'm off that medication now. I do hope your treatment continues to go well. John
Thanks John. Good to hear. Keep well and Happy Christmas
Absolute lymph count will indicate response to treatment.
Others to watch are :-
Platelets, these stop bleeding.
Absolute neutrophil count, this gives an indication of susceptibility to infection and low counts can lead to sepsis.
If red blood cell count and haemoglobin were affected then they are worth tracking.
All the rest, let your doctor worry about them. They are going to tell you to drink more.
healthunlocked.com/cllsuppo...
The CLL society spreadsheet tracks a whole lot more but shows "normal" ranges for US measurement units (and dates) so isn't very suitable for UK.
Brilliant. Exactly what I needed. Thank you
Thank you for the information Shyshark. Can you tell me where to find the spreadsheet you talked about above? I live in the US and might need it soon.
Download the template from here.
I’ve been on 560mg Imbritinib for mantle cell lymphoma since 2016. No significant side effects. At first my labs were normal, but for the last 3-4 years there has been several numbers out of normal range (Kidney) and dizziness/lightheadedness. The chronic kidney disease could be age-caused. Also, I’ve been plagued with other health issues that could be causing the changes. Hard to tell with compounding variables.
Thank you for sharing. Hope you get back on course soon. I have second consultation today so will be very interested in what you aptly describe as variables
Treatment starting uncertainty
First consultation - mixed results
Hospital response to lack of monitoring after first FCR
Starting treatment
