An update

[Nikkij81]

It's been a long while for me to post my husband has been watch and wait for 12 years now but yesterday he was informed that his haemoglobin had gone down dramatically from 113 to 67 and his white cell count had gone up from 65 to 250 in just 2 months he was at hospital yesterday and has to have a blood transfusion today and then to see haematology after to see what the next steps

[Sanders9]

Nikki I am also the wife of a husband with CLL, so I understand the worry you will be feeling. My top tips are make sure your husband has a consultant that is a CLL specialist and keep away from Dr GoogleThis forum is an excellent source of reliable information and support. Being informed is important so you can advocate for your husband and in my case it also makes me feel I have some control in a situation that can sometimes feel it is moving at the speed of light. Remember to take care of yourself too, it is easy to forget but very important.

[Nikkij81 in reply to Sanders9]

Thank you

[Nikkij81 in reply to Sanders9]

Hi sorry for the late reply he is currently under haematology at the moment he has had a blood transfusion and he feels so much better and I will try to take care of myself too and thank you again I don't feel so alone now x

[scryer99]

Sounds like watch and wait is over. CLL is funny, it can sit for a long time and then change pretty rapidly. Glad you are getting good care. Treatment start is a little scary but many of today's treatments usually get people feeling a lot better quickly even though knocking the CLL back can take longer. I bet your husband will be feeling better soon.

[Nikkij81 in reply to scryer99]

Sorry for the late reply it's been a very long day it's not certain at the moment as they want to do more tests but thank you for your reply

[cajunjeff]

Hello Nikki. That is a dramatic drop in hemoglobin. Mine got that low and I had to have blood transfusions as well.

While our cll can make hemoglobin drop over time, a drop as steep as your husband had might be an indication of autoimmune hemolytic anemia (AIHA), an autoimmune condition known to be associated with cll where our body attacks our own red blood cells.

If he has AIHA, it’s treatable with medications like steroids and certain monoclonal antibody drugs.

If AIHA is suspected, his doctor might have already run a Coombs test to see.

Of course, I am not qualified to say he has AIHA or not. I can say with some certainty, however, having had AIHA myself, that rapidly dropping hemoglobin is one of the main indications of AIHA, along with jaundice and serious fatigue. You might asked his doctor about this. Good luck, with treatment for AIHA (if he has AIHA) or treatment for his cll, his hemoglobin should improve. Mine is back in normal range.

[Nikkij81 in reply to cajunjeff]

Sorry for the late reply the aiha was mentioned but they want to do more tests and things as the haematologist mention steroids he had his transfusion and he does feel quite a bit better thank you for your reply

[GMa27]

I started treatment in my 12 th year. HGB went down to 8 & my WBC slowly crept up to 225k. My neck nodes got bigger too. After one dose of my FCR chemo- nodes were gone, WBC went down to 60k & my HGB went up to 10. I was 13q mutated & just under 65 so we all agreed on FCR. Only needed 3 rounds. In remission 6+ years Whatever his choice of treatment, it will help. 💪🙏💕

[Nikkij81 in reply to GMa27]

Sorry for the late reply it's been a very long day congratulations on your remission they want to do more tests to find out what has caused this drop thank you for your reply

[Nikkij81]

Thank you all so much I'm quite overwhelmed at the minute will try to reply to you all in a while thank you all again

[Danie50]

prayers to you both. Take it one day at a time . 🤎🤗🧡

[Nucleusman]

haematologist will decide on next step but he may end up on acalabrutinib otherwise known as Calquence- the modern equivalent of chemo-not a bad thing

[Nikkij81 in reply to Nucleusman]

Thank you

[Fran57]

My husband also has CLL, so I know how hard this bump in the road must be for you… I hope that everything will soon be sorted and you can get back to worrying (a bit !) less.

Take care of yourself too… you are needed!

Fran 😉x

[Nikkij81 in reply to Fran57]

Thank you and yes I will try