Iron Levels with CLL

[susq9948]

Ive been having issues with low iron and as a result I'm on/off iron supplements. I also started taking acalabrutinib in May. I see a local doctor who didn't seem too concerned and I also see a doc in Cincinnati that says low iron is not normal with CLL/acalabrutinib, so he wants me to have an upper GI and colonoscopy. My last colonoscopy was in 2017 and they found no issues. The iron issue has been off/on since 2021. My question is for CLL patients, do you have issues with low iron? Thanks

[AussieNeil Partner Administrator]

What have your platelet, red blood cell and haemoglobin counts been doing? There's an increased risk of bleeds when you take acalabrutinib, not only because treatment can lower your platelet count, at least initially when your bone marrow is recovering, but also because off target effects on a tyrosine kinase in platelets. So it does make sense to check for gastrointestinal bleeds.

However, about 4 months into my acalabrutinib+venetoclax+obinutuzumab trial, my haemoglobin recovery from a low of under 80, plateaued in the mid 120s, while my red blood cell count kept improving. My platelets had recovered from under 30, to the mid 120s. When I questioned my CLL specialist about why my haemoglobin recovery had stalled even though I was making more red blood cells, he arranged for a blood test for my ferritin, iron, transferrin and transferrin saturation. My ferritin was very low and my iron and transferrin saturation were low. Transferrin was good. On that basis, he arranged an iron infusion. Subsequently my haemoglobin improved to the best it had been in over 14 years, to an average of 155. My specialist put it down to CLL causing inflammation that blocked the efficient absorption of iron from my diet. I had that iron infusion two and a half years ago and my haemoglobin has been fairly stable since then.

Neil

[The-Man-with-a-Plan in reply to AussieNeil]

Hey Aussie Neil!

I read your reply with great interest. I've been on 200mg venetoclax monotherapy for 5 months and seem to be doing well.

However, because my ferritin levels have been low/'low normal' for the same period of time and a recent BMB revealed virtually no iron in my marrow, I'm scheduled for an iron infusion next month. I'm hoping this will help to reset my iron levels in both my blood AND in my marrow.

What's odd - my RBC, Hemoglobin, and reticulocytes counts have all recovered from insanely low readings to normal since venetoclax therapy started. Platelets and neutrophils remain in the toilet but Dr. Furman chalks it up to the CLL therapy.

I've come to the conclusion that there are sooo many moving parts in this disease, not everything is going to be 'normal' at the same time. My daily mantra (for the time being) - if I feel OK, don't get sick, exercise, and lead a cautious but relatively normal life, I'm doing OK.

Man with a Plan

[susq9948 in reply to AussieNeil]

My platelet, hemoglobin and RBC counts are much improved since starting treatment. I'm a 66 yo female and up until the CLL started acting up in 2018 I hadn't had iron issues for years. It gets better with iron supplements. Dr Choudry has me taking 2 supplements a day and it has gone from 25 to 50, however, Cincinnati doctor is concerned it could be something causing this as he says its low iron isn't normal with CLL/Acalabrutinib, therefore, he's requested an upper GI and colonoscopy (last colonoscopy done in 2017).

[annmcgowan]

Hi I have low iron levels and have taken iron tablets for a while now. My haematologist seems happy with this as my bloods are fine.

Ann

[Panz]

I have had CLL for going on 34 years and have had iron issues all the way. I have had a Colonoscopy and an endoscopy every 5 years and never having any issues there….they simply don’t understand why this is happening. There are a few type of iron test they run. I have take a RX for iron everyday, sometimes I take it only 3 days a week depending on the various iron counts. The RX is called Folivane-Plus. However, sometimes my Ferritin soars so they back me from every day to 3 days a week. It makes no sense that from time to time my % of iron saturation will drop below 20% and that is means I then receive iron infusion which each time consists of two IV iron infusions a week apart and they wait a month and if is still below 20% the do another session of iron. They run all iron tests monthly as I receive IVIG every four weeks. There is no idea what causes this. This has happened during the time I took Leukeran, Imbruvica and now Calquence. They now just test and treat if needed.

We are all different and respond different…no one is concerned about the whys now as it has gone on for so long. It did get a bit better once I was way past menopause.

All the very best to you and I hope you are able to get an answer.

Panz 🙂🙏💕🌈☘️🌴

[susq9948 in reply to Panz]

Do you have side affects from the Fovilane-Plus and/or iron infusions?. I've read so many negatives on the infusion.

[AussieNeil Partner Administrator in reply to susq9948]

My iron infusion was the easiest infusion I've had. It was over in I think about 30 minutes.

[Poolgirl]

I have below normal low iron levels. I started taking iron supplements in October with no improvement. In December I started doubling the dose with no benefits but my CLL doctor said it has nothing to do w/CLL. It is very frustrating.

[SandandWind]

I was diagnosed with low iron before I was diagnosed with CLL. My doctor at the time felt that it was not uncommon for post menopausal women. He put me on a heavy dose of iron and a B 12 supplement for awhile until my levels were within range and had me take a maintenance dose which keeps me stable. I have tried going off several times but have always had to go back on the supplements.

[sallylou]

I have cll for 9 years, I have low iron, my cancer doctor said it's from the cll. I had an iron infusion and my iron has gone up some. I've never had any treatment for my cll. I just had a bone marrow biopsy, waiting for the results of that. Right now my white blood cells are in the normal range.

[Gampo]

Hi, I've had low iron for the past year or so - just as my WBC was increasing. Since starting Acalabrutinib 2.5 months ago my iron levels have gone down more so I'm focussing on iron rich foods (nuts, greens, beans and dried fruit) and taking Floradix twice a day - not sure if that's only available in the UK but it's a liquid iron supplement that's not heavy on the stomach. Good luck

[susq9948 in reply to Gampo]

Hey there, I can get it here in US and on Amazon and I see its a vegetable based iron, however, lots of reviews about making me people sick. Did you have any side affects? With the iron supplements I take I just have to ensure I eat something consistent beforehand.

[Gampo in reply to susq9948]

Hi, I’ve took it years ago when I was low in iron (can’t remember why) and never had any side effects from it, which is the same now. I guess everyone is different but friends who also take it have never spoken of side effects.

[Jm954 Administrator]

You don't say in your profile your gender or age which can affect your iron levels.

If you are male or a post menopausal female then you should have the GI investigations as a GI cancer is one of the commonest causes of low iron (sorry) and very curable if detected early enough.

[susq9948 in reply to Jm954]

I think that's my Cincinnati doctor concern. My platelet, hemoglobin and RBC counts are much improved since starting treatment. I'm a 66 yo female and up until the CLL started acting up in 2018 I hadn't had iron issues for years. It gets better with iron supplements. Dr Choudry has me taking 2 supplements a day and it has gone from 25 to 50, however, Cincinnati doctor is concerned it could be something causing this as he says low iron isn't normal with CLL/Acalabrutinib, therefore, he's requested an upper GI and colonoscopy (last colonoscopy done in 2017).

[JoyfulJessica]

I am 47 year old female with stage 0 treatment naive CLL with very low ferritin levels for several years (except when I've been pregnant or nursing). I've had many iron infusions and have tried lots of supplements but it always ends up dropping again fairly quickly.

They don't believe it's CLL related but more likely due to frequent heavy periods which I'm still having every 3-4 weeks at my age.

However, just to be extra cautious they've ordered an endoscopy and colonoscopy which I'll be getting in a couple of weeks. Scanxiety in full swing even though they're saying it's very unlikely they'll find anything....

[bkoffman CLL CURE Hero]

Low iron is not normal in CLL and deserves a workup. GI bleeding and menorrhagia (heavy menses) are the most causes.

[cyclist2]

Doesn't apply to most of the commenters above, but low hemoglobin or hematocrit are often assumed to indicate low iron when they really indicate bone marrow suppression

[CycleWonder]

I have not been tested for ferritin. My hematocrit has been normal in the last couple of years except in the month prior to starting treatment.

[Amberesque]

I was diagnosed in January 2021 and started treatment with ibrutinib in March of that year. My iron levels weren't checked until a few months after starting ibrutinib, at which time it was discovered that I was extremely iron deficient. In my case, the ibrutinib had caused extremely heavy menstrual bleeding, so I'm quite sure that's what led to my iron deficiency. I started taking ferrous fumarate 300 mg 2x/day with 500 mg vitamin C each dose plus a prescribed drug to reduce menstrual bleeding, and within a couple of months my iron was back in the normal range.

[krperez]

I've been on ibrutinib for close to 10 years. As of a year or two ago, I was dx'd with "iron-deficiency anemia." Tests were done by my CLL specialist, the same as mentioned by AussieNeil. They indicated that the cause was my inability to metabolize iron rather than an internal bleed. Have you had those tests done?

[Doggoneit101]

I've had iron problems a couple of times. When I was younger doctor said because I had heavy longer menstrations and lack of red meat consumption. I just took an iron pill daily and it didn't affect me as much. I have noticed when my iron gets low it really affects my nails they get really brittle. I'm exhausted when it's low. When it's really low I've noticed my tongue gets sensitive and gets deep cracks. I'm not sure if you've ever had and endoscopy and colonoscopy but it might not be a bad idea. I did them both at the same appointment. I figured might as well to be on the safe side.

[narl]

yes I do , And I have talked to other people on other CLL groups that have low iron also. My mom also had CLL and I remember her saying that she was in the hospital as a kid because she was very anemic, I have wondered if low iron has anything to do with CLL. My CLL doctor always says my iron is fine because he looks at my hemoglobin, red blood, count and platelets but when my endocrinologist ran, my iron is still low, and my saturation is low and not even on the chart. I just found this article a couple of weeks ago about iron ncbi.nlm.nih.gov/pmc/articl...

[scarletnoir]

I'm pretty sure that this problem is not unusual in CLL patients. In my case, I became anaemic a couple of years after chemo, and was put on iron tablets and a B12 substitute to aid absorption of iron. These I took for several years, until I was told that my iron levels were too high! So I came off the pills and no-one has said anything about it for a few years.

So, it seems to be common but unpredictable, both in whether a person will get it and in whether it persists. (I also had a colonoscopy which found no problems.)

[susq9948]

Thanks for all your feedback. Having upper Gi and colonoscopy Monday.. praying for good results!!

[janvog]

Age 88. Since 2018 on Imbruvica. Normal CBC and CMP since two years. I remained always slightly anaemic and then hematologist prescribed FolivanePlusCap which I take every other day. I drink some prune juice and some psyllium fiber every day to avoid constipation from the iron. Exercise and general optimal diet is necessary for proper general functioning. Possibly this steady low impact method works better then "one shot infusions" ?

[Tomaljoe69]

Hello, yes since taking Acalabutanib I’ve had low iron and ended up in hospital with extreme fatigue. I’m now oral iron therapy, a folic acid tablet daily. Can I ask have you experienced any stomach and bowel problems