Hi @sajdee,
I’m a 72 year with comorbidities including Waldenstroms Macroglobulinemia (Waldenström macroglobulinaemia (WM)).
I start as we all must with “I’m a patient not a Haemotologist/Oncologist” and “everyone is different as can be their treatments”
I’m on a trial called Rainbow (UCL/CRUK) For the use of Rituximab and Ibrutinib against DCR chemo for initial therapy. I am aware that Ibrutinib can also be used for relapsed Chronic lymphocytic leukaemia (CLL) therapy.
Not knowing if you’ve been subject to Rituximab previously I will indicate my regimen and experiences to date.
Treatment commenced June '22 with Rituximab I.V. under strict monitoring in the ward with Clinical Specialist Nurses observing for potential reactions.
This was/is backed up with Ibrutinib, anti virals and anti biotics. A diarrhea med also but to date not needed. These meds are collected when seeing my Consultant/CSN’s every 3 months.
The Rituximab ceased after 6 months and the Ibrutinib cocktail carries on to today and for at least a further 4 years (the length of the trial) unless the Waldenström macroglobulinaemia (WM) returns or the Toxicity is severe.
Now that sounds scary but to date I’ve had more issues with other comorbidities that the Ibrutinib per se.
Skin rashes but I’m an Excema sufferer which is autoimmune issue that may or may not be affected by the Rituximab having knocked back the B cells and the Ibrutinib influencing the control of Immunoglobulin M (IgM) and possibly IgE and Mast Cells (Histamine production) and the notorious ‘Itch’. Broken skin of course is an immune risk with the Immune system being weakened.
Bowels irregular but I’m told Diarrhea isn’t the only effect on the GI system and can be managed.
So back to the Ibrutinib, for me 420mg per day every day same time with glass of water. Taken by mouth and the daily hydration is important.
As it also affects Platelets production bruising and bleeding must be looked out for. I’ve had reason to temporarily suspend it before and after medical procedures that have risk of haemorrhage.
Some dietary controls such as no Oranges for instance as it affects the dosing of the Ibrutinib. There are others which I’m sure you’ll be told but I eat a varied diet without nausea.
No hair loss to my understanding but as a balding old wrinkly would I notice?
Brittle nails.
Keep having regular Obs being taken. I have T2 Diabetes so my kidneys, liver, cholesterol etc are periodically checked along with BP and weight. In fact for many years now I keep daily results but that is me and not a requirement of treatment. Hypotension (higher blood pressure) and Atrial Fibrillation (variable heart beat) must be monitored.
Look out for changes in vision and beware of infection, but goes for us all on this Forum. I’m driving and reading with no experience of ‘Brain Fog’
I would say my biggest issue stems around fatigue; my mind might think of doing tasks but my body says "*&^%!
To finish my ramblings I feel I should explain. 40 years ago I received Chemotherapy and Radiotherapy for Hodgkins Lymphoma. To quote my current Consultants “Industrial Chemicals” and “Radiation” so I speak with personal experience that Ibrutinib, as a non- chemo targetted treatment is a walk in the park in comparison.
I also believe it certainly helps by being under a Haemotology Oncology CSN team who can be contacted 24 hours a day. I fear for those on this Forum who are reliant upon non-specialist GP’s.
As I previously said we are all different in both body and mind so these are my experiences but I strongly recommend an enquiring mind and self advocacy if you are able. You are No.1! The amount of Doctors I’ve seen that have no idea about Ibrutinib if its not in their specialities.
It might be incurable but neithers the Common Cold - it’s manageable!
Wishing you well in you treatment and future. The Forum is a good place for support, far better than Dr Google.
Iain
didn’t I.