Thanks for the comments from my first post regarding my Dad and his Chronic lymphocytic leukaemia (CLL) a few weeks’ ago.
Unfortunately Dad was hospitalised not long after I posted He had severe side effects to Calquence and ended up in hospital for 6 days with anaemia, neutropenic sepsis and hypotrenemia.
Thank goodness he survived (he’s 81) and prior to starting calquence a few months ago had been formally diagnosed with Chronic lymphocytic leukaemia (CLL) on Jan 2019 and all was going very well.
We are so grateful he’s out of hospital but Dad feels a state of shock at what happened. We aren’t sure if he can stay on a lower dose of calquence (he’s naturally very nervous of any drugs now) or if there are other tablet options?
I wondered if anyone has experience of a similar thing with calquence and if they have tried other medications that have helped manage their Chronic lymphocytic leukaemia (CLL) better with less side effects?
He also has the most horrendous swelling in his feet and ankles. We’ve spoken to someone who suggested lymphatic drainage massage.
Has anyone had success with this or other alternatives as he finds this debilitating, even just getting his shoes on takes a long time!
Many thanks in advance,
Hi Alex, I’m so sorry to hear what your Dad has been through recently! What a worrying time that must have been for you. Please do remember our support line is here on 0808 2080 888 if you, your Dad or any of your family want to talk things through. Has your Dad spoken with his treating team about other potential options? Thank you for posting this thread, others may have experiences they can share. All the very best to you and your Dad.
Hi @AlexD thanks for your post, I cannot help you medically, but just reading your post you and your dad have been through so much emotionally and practically in such a small space of time.
Actually I expect that you are both still in complete shock with this whirlwind of what you are going through.
It must be such a scary time for both of you.
Please do use the Blood Cancer UK support line they are all lovely on there.
For you you must feel so helpless to make it better for your dad
Look after, take care and spoil yourselves.
Gosh, that must have been a really tough time for you all and obviously the medication is a concern for you going forward. Please keep us updated on how you all are x
Hi AlexD…what a worrying time for you. I can empathise as my husband also had anaemia and sepsis after his chemotherapy. He has a different kind of cancer so it wasnt calquence he was on but the doctors did explain that infections can happen with chemo and anaemia common with blood cancer. He is on a different chemo now and although it has its side effects, nothing quite so severe as that first time. Its all mind blowing Alex but I just wanted to reply to say you are not alone. Hopefully your consultant will come up with an alternative treatment which your dad will tolerate better. Take care xxx
Hi @AlexD I have been thinking about you and your dad and I wondered how you are both doing?
You, as a daughter, are often forgotten, but blood cancers effect all the family emotionally, physiologically and practically.
We and the Blood Cancer UK support line are here for you all.
Thanks so much for your email Erica, that’s so kind of you to message.
I will message with a proper update shortly x
Thanks so much for your email.
I have to say the last few weeks Dad has been doing amazingly well. He’s drinking more water, walking daily, having acupuncture, using Chinese herbs, eating well and have massages on nis legs to help ease the swellings. The consultant has agreed for Dad to come off medication altogether for now and we will review bloods in 6 weeks. His blood pressure also very good so the doctor said he can come off these tablets too. My mum and my sisters are all delighted with how well he’s doing. We just hope it can be maintained. Thanks so much for thinking of us all, I will update you after the next appt xx
Wow - that’s really amazing progress and you all must be so pleased! Let’s hope things keep moving on the right direction! Great news!
Great news @AlexD about your dad, it sounds as if he is doing all he can to look after himself too.
How are you yourself doing @AlexD?