SLL and Acalabrutinib

[uide3095]

Hi ,

I have SLL and started on Acalabrutinib in January 2022, unfortunately got Covid at end of Feb so off treatment for 6 weeks at that time. Pre treatment my Hb level was at 146 and Lymphocytes at 7.9. (all other bloods normal and no liver, kidney or bone issues)

However my Lymph nodes were 8cm to10cm at that time in my neck and groin, there were others but not so drastic, so that's why treatment started

2 weeks into first treatment my lymph nodes were already reducing so all going well until the dreaded covid, I had infusion and 2 lots of antibiotics but took 4 weeks to recover.

Blood count after covid and before treatment started again were Hb 149 and Lymphocytes at 4.67 however Lymph nodes returned to previous size!

Back on treatment in April and all good, Lymphocytes up to 24 due to treatment working and now gradually going back down to 16 in July so as expected. However my Hb is continuing to go down from 149 in March to 141 to 127 to 120 to 116 in July.

However I still feel normal and have all the way through my diagnosis back in December 2020 after noticing my lymph nodes swollen in my neck. I am back at the gym and training as well.

March 2021 the peripheral blood leukemia mutation screen identified loss of DLEU and ATM genes

Consultant has mentioned possible Anemia on the way, has any one else had experience of this, he says its due to the treatment as blood can start to change other markers.

thanks Will

[Poodle2]

It might be due to treatment but when I had covid, my Hb started to drop once I recovered and I honestly believe it was not just due to my CLL. Hb at 116 is still not that bad at all so I would just give it time. I'm sure your doctor will monitor it closely and take action when needed. Have you had your ferritin levels checked? Maybe some iron tablets would help?

Petra

[uide3095 in reply to Poodle2]

Hi thanks for your reply, they will be doing additional blood test in another 4 weeks to check for other markers, what are ferritin levels, I guess that maybe on the blood sheet, I will check when I pick it up, thank you for your infoWill

[LeoPa in reply to uide3095]

Google foods rich in vitamin B12 and iron. Eat them a few times before your next bloods. See if they help with the hemoglobin.

[AussieNeil Partner Administrator]

We've had quite a few members reporting tumour flare after stopping a BTKi drug. Some even thought they had Richter's Transformation as did their specialists!

healthunlocked.com/cllsuppo... So seeing nodes return to their swollen, pre treatment state is to be expected. That's because BTKi drugs work by inhibiting the CLL cell signalling that 'anchors' them in our nodes. It takes a few weeks or more for the inhibited CLL cells in the blood to enter apoptosis and die. That's why the absolute lymphocyte count increases in the first month or so of treatment.

It's good that your consultant is testing your ferritin (the iron carrying protein). Checking iron, ferritin and B12 are standard tests done to find out why anaemia is developing. I needed an iron infusion during my treatment, as my red blood cell count recovered to very health levels, but my haemoglobin recovery stalled.

Neil

[JerrysGirl3 in reply to AussieNeil]

My ferritin levels in April were 49 and I can't seem to find any iron tests since. I've specifically mentioned, at each visit, the possibility of anemia since I've had it so many times in the past. No one listens to me. It's MY blood! My side effects. 🤦🏻‍♀️

[AussieNeil Partner Administrator in reply to JerrysGirl3]

That's probably because you aren't anaemic as you reported 2 days ago healthunlocked.com/cllsuppo... The lower limit for ferritin is around 20, so you are good there too!

[JerrysGirl3 in reply to AussieNeil]

Thanks Neil!

[JerrysGirl3 in reply to AussieNeil]

But there was no ferritin or iron in those labs of July.....

[AussieNeil Partner Administrator in reply to JerrysGirl3]

Why waste money testing for causes of anaemia when you aren't anaemic?

[Kingfish6]

Hi. Curious with Covid, why did u get off Acal...? I had Covid pneumonia in 1/2020, 5 days in hospital (no-ventilator or oxygen). While my CLL specialist was called by the pulmonologist treating me, he didn't know what to do. I did not get off Imbruvica, & worse thing was the hospital took my external drugs & analyzed them to make sure that's what came into the hospital, then repackaged the pills into blister packs.

[uide3095 in reply to Kingfish6]

Hi I came off Acalabrutinib because it also reduces your immune system further so could have made things a lot worse. I used to put my capsules in a 7 day box but was told by the chemo chemist they shouldn’t be handled as the poison would be on my hands and that could cause a problem for others i.e. contamination

[bachplayer13]

I am also struggling with anemia right now my hemoglobin went from 11 7 to 97 in the period of a month. My iron saturation and my iron levels are low so I started iron replacement tablets with vitamin C once a day to help with absorption. I’m re-testing in two weeks and I have my blood is still anemic I was told to follow up with a G.I. doctor to rule out a G.I. bleed you can have a slow G.I. bleed and not notice that you were losing blood. I hope I don’t have to do that. I’m actually Zanubrutunib myself I have been on acalabrutanib but I had to stop it when my disease progressed but in my case I was on a proton pump inhibitor which is contraindicated and I couldn’t get off of the proton pump inhibitor. They told me it was OK and I just needed to space it two hours apart from when I took acal but in the end they felt that the progression was most likely due to that interaction between those two medicines and it reducing the efficacy of acal. Zanabrutinub does not have that problem I could be on a proton pump inhibitor which is a game changer for me

[Waves01]

Hi Will. Why did you go off the Acalabrutnib when you caught covid? I started same drug 9weeks ago and haven’t been told that I have to temporarily cease treatment during covid.

[uide3095 in reply to Waves01]

Hi, because my consultant hematologist told me it reduces your immune system still further so it could have made the covid worse. I then asked about when my bloods return to normal as my Lymphocytes are reducing toward normal now and my lymph nodes are returning to near normal size already, he told me Acalabrutinib as most other treatments for CLL and other cancers reduce your immune system anyway, and as these drugs are for life or until they no longer work or they create toxins we will always be at risk of infections so we will always need to be carefulWill