My husband has CLL and has a problem with low B12 and folate. His ferritin is also stubbornly low for which he’s been recommended an iron infusion for deficiency anaemia and injections for his B12 deficiency
I’m ok about the B12 injections but for some reason feel a bit nervous about the infusion but that’s probably because I don’t know an awful lot about it
Anyone here with similar health problems and experience with an iron infusion
An iron infusion is nothing and you may be surprised how much better he would feel. I get IVIG infusions every 4 weeks and about twice a year for they throw in an iron infusion. Never have had an issue with either one. I have had CLL for going on 36 years. The iron and IVIG for the last 10 years. I am on Calquence (Acalabrutinib) and it is my third line of treatment and all is well! The iron infusion is nothing to fear it is just something you aren’t used to. All the very very best
Panz🙏😊👍🥵❤️☔️
That’s very reassuring. Thank you for taking the time to offer not only reassurance but hope. Very grateful
I’m keen to get his anaemia investigated; do you have a diagnosis? Husband’s haematologist has let my husbands levels decline to a very low place. He kept saying to him: all is well, go and live your life. I just knew that wasn’t right and have found a new doctor, Andrew Klein. Anyone know of him? If so, private messages only please as individuals can’t be discussed in the forum
I don’t what an IVIG is, nor calquence. Will look them up
Definitely find out what's causing his anaemia. What are his numbers like? Has he had any treatment? My Hb was low and I also had low iron and ferritin. I had two iron infusions, they always helped but it wasn't sufficient. I was able to go another 9 months but had to start treatment at the end. My anaemia was caused by my CLL progression.
I have had an iron infusion twice. It took about an hour I think. I didn't have any side effects. Felt so much better straight after. It looks a bit like blood, very dark, if he has never had a blood transfusion, it can look kind of scary - it did to me, not even sure why 🙂make sure he drinks at least 2 litres before the infusion so his veins are ready and they can get the cannula in easily. I am sure he will find it very uneventful.
Thank you for the mini tutorial, very helpful. Great tip to drink plenty, he’s terrible for not drinking enough. I do a lot of reminding😵💫
What you’ve said is very reassuring. I can enjoy my Sunday evening now
Thank you again
To me the iron infusion looks like rusty nails….your info for Noelnoel was very good and I know she will be happy he gets the infusion.
Our iron is a complex thing. They run an iron profile on me every 4 weeks and it jumps all over the place. My biggest issue is with the rather high level of Ferritin level in the 500 to 800 and the iron% of saturation rides below 20% most of the time. We are all so very different and they have not come up with a cause other that is my system dealing with the CLL.
I think we all are apprehensive to start a new procedure. I hope Noelnoel is able to find a doctor that she feels is listening to her concerns as concerns need to be addressed.
You take care….I sense you have things under control and that is all any of us want!!😊
Panz
🙏👍🥵😊☔️
Calquence sounds scary but I like the sound of IVIG
My husband's haematologist has offered nothing so far. Based on his lack of concern for my husbsnd’s iron deficiency and missed PA diagnosis, I don’t think he’s very good
Is it possible to get a different haematologist? We live in North Herts, any recommendations for a competent person?
Recommendations can be via private message only please, as per rules of the forum
Thanks
I've had one iron infusion after my haemoglobin recovery stalled while my red blood cell production returned to normal during treatment. I subsequently achieved my highest haemoglobin result in 14 years, higher than when I was first diagnosed with CLL/SLL. My haemoglobin is still very good nearly 4 years later. It was the easiest and fastest infusion I've ever had! My CLL specialist reckoned the years of CLL related inflammation had impacted my body's ability to absorb and utilise iron.
Neil
Thank you Neil for sharing your positive experience
It’s helpful to hear you’ve been able to maintain good levels . Do you feel well?
I feel very well, other than having to put up with postherpetic neuralgia pain. That's why I've been encouraging members to get up to date with their Shingrix vaccinations. 
Neil
I had an Iron Infusion & 1 unit of PRBC after losing almost 4 units of blood after my 2nd Total Knee Replacement. This was during my W&W period & they could not explain why I lost so much blood. But I felt like the Bionic Woman afterwards lol. No issues!!!
Fantastic! Did it last?
What’s W&W?
Yes my own body kicked in & kept my Hemoglobin within normal range. W&W is a term used with CLL patients when they are diagnosed but still do not need treatment just monitoring. Wait & Watch period, (Wait & Worry) the time we should use to take the best care of ourselves & learn about this disease.
They still say 1/3 stay here & never need treatment but honestly I question those statistics with so many younger people being diagnosed & with all these new Cancer Centers being built from Scratch! Society predicts many will have cancer in the future so they are gearing up for this big money making disaster 😡 Where is the gearing up for prevention 🤬 Sorry I digress…
There’s no money in prevention for the pharmaceutical companies I’m afraid 😡
Husband burying his head in the sand I fear and hasn’t got a clue. I’m the one doing the digging and having heated discussions with said haematologist
That’s a positive then your body kicked in and did the job
Thank you for the explanation. Here’s wishing you more positives!
I had an iron infusion and agree that it is by far the easiest way to up your iron levels. I wouldn’t hesitate if offer it again. John
iron deficiency - something to be worry about ? 
Iron Levels with CLL
Second Rituximab infusion.
Chemotherapy 
