Hi there,
Not sure why, but as I am about to start treatment next week I just feel the need to share my experiences so far. Unusual for me, as I rarely post things like this. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in November 2024, aged 51. Since then I’ve had many blood tests, bone marrow biopsy and scans. Until about a couple of months ago the Doctor was hoping to not start treatment for about 12-18 months but at my appointment with him in May (approx) the scan showed lymph nodes getting larger, including one by my heart and the blood tests were showing the counts going in the wrong direction too. So, at my last appointment it was decided to start the treatment next week. I will be going onto Ibrutinib and then Venetoclax. Today I have an ECG to check my heart as I believe the drugs can cause Atrial Fibrillation. Obviously I’m apprehensive about how the drugs will affect me, I’ve read about all the potential side effects. We have a holiday booked abroad for the end of July so I’m hoping I will be well enough to go on this. We booked it when we thought treatment was a long way off. It’s been a good while since me and my family have been abroad. It would be good for us all to go away. My wife has been a great support throughout this so far. The boys (17 and 14yrs) will love a holiday in the sun.
Thanks for reading.
Good Morning @Alan72,
Welcome to our forum and thank you for sharing your experience so far. Hopefully our forum will be somewhere you feel comfortable to share as you move forward in the treatment process.
I do hope you manage the treatment well and you can have your holiday in the summer. Have you discussed your trip abroad with your treatment team? They will be able to help with preparation for this and ensuring you are kept as safe as possible on your trip. I have linked in some travel pages here from our website which may also be helpful to read - Blood cancer and travel: your guide | Blood Cancer UK.
We are very happy to support you and should you ever wish to talk to one of our nursing team you can reach us on 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)
Good morning @Heidi-J-BloodCancerUK,
Thanks so much for your reply. I did mention the holiday to my doctor and he did say there shouldn’t be an issue going, so long as it doesn’t clash with moving into the Venetoclax as even more monitoring is required when going on to those tablets. Thanks for the link to those travel pages, I will take a look at them. One thing I was wondering was if I will need some kind of letter to take with me to prove what the tablets are for and what they are?
Kind regards,
Alan
Dear @Alan72,
That’s great news, hopefully it is prior to the start of venetoclax which as you say has quite a bit of monitoring initially. We would always encourage you to take a letter with you, that could be a recent clinic letter which outlines your treatment plan or you could ask your doctor for a letter written purely for your travel. Travel insurance is another thing that can be tricky but there are some great threads on the forum about this so do use the search function at the top if you do need to look anything up!
Best wishes,
Heidi J (Support Services Nurse)