Time to write in

[rower49]

and let everyone know how wonderful it has been reading these posts why determining my steps in the CLL process. I started Ibrutinib in October (had other choices) but went with this one as it seems to have a good outcome for the first time medication. Since October my WBC has come down from 140 to 50 and lymphocytes have come down the same way. Neutrophils are in normal range and while I still have bruising my platelet count is in the normal range as well. It seems odd that my family and I are excited because wouldn't you be excited if all were in normal! Any positive change is just a stress reducer and I think I can finally let out a breath and perhaps see a positive outcome. My other condition C1 deficiency is still present (related to CLL) and very rare-1 in a 100,000 thousand in CLL population- but instead of injecting every 2 weeks I can inject every 3 weeks. I also realize how lucky I am in Canada where the Cancer Agency pays for my medication and my injections are being paid by (I think because I don't ask) the government at $12,000.00 a month. I still have huge fatigue which has been the hardest think for me to deal with as at 73 years old I was still rowing in my single scull competitively and I work full-time. It is a mental draining process to convince myself to exercise when so fatigued even though I recognize the importance of exercise. Well thank you again everyone for holding my hand with your posts for the past 3 years in the W&W then starting medication.

[Pacificview]

Thank you for the upbeat post. So glad your are doing well. I do hope you energy returns to you soon! CLL fatigue is quite a annoyance.

[CycleWonder]

So happy to hear about your experience and bright outlook. It is hard sometimes to start the process of exercising but once you do, usually it just feels right and puts a bounce in your step.

[spi3]

You have the best attitude ever! I wish we can bottle some and share it. Ty for sharing 💓 your journey too.

[Phil4-13]

rower49, you sound very positive. All your news is encouraging for us to hear. I, too, am 73. I stay active and am in W&W. Keep us posted and my wish is for your fatigue to diminish soon. 🙂 Sandra

[LeoPa]

Competitive rowing at 73,wow you are my new role model!

[Big_Dee]

Hello rower49

Great to hear from you, it has been a while. Sounds like CLL is normalizing. Blessings.

[Imua]

Thank you for sharing. I just wondered what province you are in as there seems to be some discrepancies as to what drugs are available across the country.

[rower49 in reply to Imua]

I live in British Columbia

[Emgeegee]

Great to hear, rower49! In Saskatchewan, ibrutinib is also paid for by the province though I am unsure about the injectable medication you refer to. Anyway, I agee with your sentiment - we are indeed fortunate to have access to treatments like this! Wish I was as active and energetic as you are!