Hello, last month, exactly 20 years since my dad passed from this disorder, I received my diagnosis. I have been given a 6/10 chance of surviving for 6 years. I am in my mid 60’s and usually happy to be a private and solitary man but I feel that I need to reach out at this time. I am the main carer for my 98 year old mother who is very upset about my diagnosis. Apart from her I have no immediate family although friends have offered me support. I need to start treatment soon and I have been asked to consider taking part in a clinical trial (Bellwave-011). Does anyone have any experience of this trial? I’m feeling overwhelmed at the moment and whilst friends have the best intentions I think advice from others in a similar situation will be more helpful. Thanks
Oh @SteveMC Welcome, but I am so sorry to hear about your diagnosis and the timing of it could not have been worse for you and your mother, anniversaries never get easier do they.
You are now part of our forum family.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you to see if they have any knowledge of this trial.
I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 20 yrs ago, at the age of 53 yrs, and saw on the internet that I had a life expectancy of 5-10 yrs and I am still here and research has moved on at a great rate since then.
It sounds as if you have some priceless friends and if you were to need to (and I find this really difficult) do ask for and receive help,
I hope others can share their experiences.
Now is your opportunity to write down all your fears, questions and practicalities for your next appointment.
The Blood Cancer UK support line is there for you on 0808 2080 888 too
I look forward to hearing more about you.
Look after and be very kind to yourselves, I expect you and your mum are in shock and please do keep posting as I look forward to hearing more about you.
Hi @SteveMC
I’m not a a medic but a patient. My membership is in the Waldenstroms Macroglobulinemia club. Not totally dissimilar to Chronic lymphocytic leukaemia (CLL) in some ways.
My understanding is that the trial you speak of is for assessing kinase inhibitors such as Ibrutinib, a drug I take myself.
The progress in therapies for blood cancers have progressed so much over recent years, be that the Acute (rapid) of which I had Classic Hodgkins 40+ years ago; or the Chronic (slow) such as my current Waldenström macroglobulinaemia (WM) with 10+ years watch and wait followed by my current Rituximab Ibrutinib treatment.
I won’t say more at present should I mislead you. We are all different in morbidities and therapies so you’re best asking your consultation team. As @Erica always advises “write down your questions and thoughts ready for your doctor/ nurse meetings”. I keep a daily diary to assist.
Blood Cancer UK are great support, far better than Dr Google, and they’re not slow at linking you through to other relevant specialist associations such as Cancer Research, Macmillan etc etc.
Wishing you well,
Iain
Dear @SteveMC
Thank you for posting and welcome to our community. I do hope you find this space informative and supportive.
It is understandable that you are asking about the trial and how it will potentially affect you. I have found some information from our colleagues at Lymphoma Action: Lymphoma Action | Bellwave-011: A phase 3 trial of nemabrutinib in people with chronic lymphocytic leukaemia or small lymphocytic lymphoma (lymphoma-action.org.uk).
We do also have a Clinical Trials Support Service | Blood Cancer UK who you can talk to as well if that would be useful? They are an expert nursing team that can help you navigate the information around this trial @ClinicalTrialsSupportService
May I ask whether you have been allocated a Clinical Nurse Specialist or Research Nurse that you can gain support from? I would recommend talking to one of the team around not only the trial but your responsibilities in caring for your Mother. They may be able to help find some local support for you both so that you can concentrate on your treatment whilst still being able to support your Mum.
I would say that accepting help from friends can be tough, especially when you’ve always coped yourself, but your treatment may mean you need help from time to time and I am sure they will be happy to do something to help you both.
If we can be of any support please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
Thank you for your reply Gemma. I have agreed to take part in the trial, further tests have been done and I am expecting an appointment in the coming weeks to confirm if I am well enough to take part. I think that I have been allocated 3 specialist/research nurses. I need to confirm which one is the main contact. I had not considered talking about my domestic situation with them so thank you for the suggestion. Yes I must try and start accepting help from friends although I think that it will be difficult to start with. Thank you