Hi @gordo, thank you for your question, and we do hope you’re doing okay? In case it’s useful at all, we have some information about vaccines for people living with blood cancer, here- Blood cancer and staying safe | | Blood Cancer UK. It’s likely you’ll be advised to have the flu vaccine however as Erica has mentioned please do check this with your healthcare team.
We also have up-to-date information regarding the covid vaccinations here- Covid vaccine for people with blood cancer | Blood Cancer UK. These are being offered to those who are immunosuppressed to offer the best chance of protection against covid, however again please don’t hesitate to speak with your healthcare team if you have any concerns.
During the watch and wait period it is vital that you keep up your regular blood tests. In medical terms, Cronic means slow progression.
My Chronic lymphocytic leukaemia (CLL) was initially picked up during my yearly blood tests where my My lymphocytes were at 30 at which time I was referred to my haemotologist who continued to monitor the situation with monthly blood tests. In December 2020 my lymphocytes had reached about 70.
At this time, I had CT Scan with dye that confirmed my glands were the size of golf balls and a bone marrow biopsy that confirmed Chronic lymphocytic leukaemia (CLL) with a particular mutation called P17 Deletion and this doesn’t respond to Chemotherapy.
My haemotologist invited me to take part in a Global Trials Program of 500 people and three distinct cohorts one focused on P17 Deletion.
To cut a long story short, I was accepted into the program in December 2020 and after my last two quarterly CT Scans and Bone Marrow Biopsies in April and June this year I am in deep remission with all my bloods back in normal range and no detected P17 Deletion.
I was originally given six months to two years to live but my Haemotologist says I am good for at least eight to ten years.
The program I have been on didn’t consist of Chemotherapy but was based on a new generation of medications which included Venetoclax and Zanubrutinib
So hang in there, there are many options for your haemotologist to explore.
hi to all .just got my 6 months blood done. all well…lymphocytes up a bit but not concerning. so back in feb .good news…i have took advice Erica’ said just listen to your body .if you feel like doing it do it .if not have that rest… hope everybody is going ok. and happy fundraising this month…hope to here some storys ,or just chat. .gordo
Hi @gordo great news, a sigh of relief till Feb.
Thanks so much for fundraising, if you need any help please do contact the Blood Cancer UK fundraising on 0808 2080 888
Look after yourself first though
I have been on watch and wait for 7 years and I too took the decision not to tell anyone apart from husband. I have Large granular lymphocytic leukaemia (LGLL) and if I mentioned anything with the word cancer in it they would immediately imagine the worst and would ask lots of questions and would make me think about it more and also worry them. It does come with difficult explanations especially where covid is concerned. It’s good to know how other people deal with their condition. Take care
I still don’t regret my decision but I also don’t like lying to the people who love and care for me. It sound hypocritical for me to say I would hate not to know someone whom I cared for wasn’t telling me what they were going through. But I needed to get my head round what it is I’ve got and what the future looks like. I needed to gain knowledge and experience to be able to answer all their questions and give them faith that I had it under control and there isn’t anything they could do. I’ve seen so many situations where people have openly come out with having cancer and then lose relationships and felt alone or suffocated that they lost control of their situation and diagnosis.
The important thing is everyone is different and living in different circumstances, there is no golden solution and often pot luck the path you’ve chosen proves to be the right one.
What makes me manage my condition physically, mentally and emotionally is having a brilliant medical team and the amazing people on the forum and charity whom are more than enough to support and guide me through this and though many don’t know everything I’ve never felt alone with this!
hi pru .i thought about not telling my kids grandkids…just keeping it to myself…but when i told them .yes of course the cancer word was me dying…but when the read into it and seen it was curable when neaded .they came around and became very supportive…your kids will understand, try not to keep it to yourself .it just makes you allways aware if they find out and would be upset. but if rammie says everyone is different…
Hi Gordo
Thank you. It is a difficult one for me. I did share with my sister who was a great support but sadly she died suddenly 18 months ago. My niece knows I have a blood disorder that affects my immune system but no more than that. My hubby is great - I don’t have my own children but two grown up step daughters and step Grandchildren. Lots of friends who I know would be great but I just can’t share at the moment. It’s like you say though once you explain in more detail people understand more. I’m glad you have been able to share and I know bottling things up isn’t great. Thanks so much for your reply
Hi Rammie
It’s good to hear how well supported you feel and that you have no regrets about your decision. I too feel well supported without sharing with everyone. I know close friends and family wouldn’t fully understand why I’m not able to share. It’s difficult to explain. But as you said we have to do what feels comfortable for us. Thank you again for your reply
