new to this and CLL

[angelscent1]

Hello everyone,

I was diagnosed with CLL in October 2022 and my goodness what a shock that was!!! I have been having chemo since November and am eagerly awaiting my latest blood results. Its really strange to feel quite well physically but have Cancer, also being told to stay at home in my prison, its a weird feeling.

[Jm954 Administrator]

Hi there angelscent1,

Welcome to this community. Can you tell us what treatment exactly you're having? thanks

Jackie

[angelscent1 in reply to Jm954]

Thank you. Acalabrutinib, why?

[Jm954 Administrator in reply to angelscent1]

Thanks, Acalabrutinib is great.

I was just a bit concerned that you'd been given old fashioned chemotherapy and wondered what it was.

Jackie

[angelscent1 in reply to Jm954]

Thanks Jackie, I was worried there too!!!

[kitchengardener2 in reply to angelscent1]

I don't know your personal situation but with Acalabrutinib,you should be ok to live carefully but normally.

The shock of diagnosis is the worst part of having any illnes and CLL is no different. I thought 'Cancer, I'm going to die'. My consultant said that CLL was unlikely to be the cause of death, I would more likely die with it not of it.

Do you have a Clinical Support Nurse? If not, ask for one,mine us wonderful and is my first port of call with questions. I was also given the telephone number for the Macmillan nurses at my nearest hospital. This is a 24/7 service and good to have available.

By joining this forum, you are amongst friends. I would also suggest that you join Leukaemia Care and Blood Cancer UK. You should also contact the CLL Support Association.

I have been taking Acalabrutinib since August 2021, my last blood numbers are excellent and apart from lack of immunity, I live a normal life.

I wear a mask when in shops etc. We don't have untested visitors in the house and are generally very careful.

Were you told not to go out or is this your choice? Personally I refuse to let CLL get the better of me, yes I have a blood cancer but it's not or very unlikely to kill me.

If you want to chat privately, please do message me.

Stay strong x

[angelscent1 in reply to kitchengardener2]

Thank you so much for your positive reply.

[angelscent1 in reply to kitchengardener2]

Thank you so much for your reply. I am yet to speak with anyone for help as my Key worker was off sick!!!

I was so worried about going out but my Consultant has advised to go out as long as I am careful. I am anyway, and never go without a mask. I work at the local hospital so have to stay away from there for a while.

I think the key issue is lack of immunity and that will continue for all my days.

Thank you for your kind words and support.

[kitchengardener2 in reply to angelscent1]

Private message me, if I can help. God bless, stay safe x

[lankisterguy Volunteer]

Hi angelscent1,

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Welcome to the club none of us wanted to join. We usually see multiple new members each week, so there are many useful explanations on this page in the box labeled: Related Posts

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And the encyclopedic Pinned Post that you can use for multiple weeks of reading and deep education: healthunlocked.com/cllsuppo...

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Len

[angelscent1 in reply to lankisterguy]

Thank you Len, that's really helpful, Ill take a look.

[Edalv]

I am surprised you were diagnosed in October of 22 and had to start treatment so soon. Usually there is a evacuation period before starting treatment. Was your CLL in a very advanced stage or there were other complications..? Just curious…

[LeoPa]

Acala is not chemo. Don't be surprised if your blood results deteriorate in that your absolute lymphocyte count goes up. That is what it is supposed to do and it would mean that the drug is working very well.

[MovingForward4423]

surprised you would be having FCR now. What country?

[MovingForward4423]

I just read the thread, you are on an inhibitor not chemotherapy. BTK inhibitors are fantastic, go live your life. Your bloods may jump up for a period of time but that is normal. Eventually over time they will come down and keep the CLL at bay. My tip is simple, stay positive, don’t let the cancer consume you, it is what it is and you could had got something a lot worse than CLL. There is always someone worse off Also, keep fit and healthy, it helps and will keep you prepared for any other treatments that may come along.