Iron infusion?

[joycecanada]

Started ibrutinib with a HGB of 6.1 had transfusion and HGB has slowly been rising over the past 4 months and is now 10.1. I was excited with the 10.1 because this is the highest that it has been in many years. Saw my kidney Doc and he said that my ferritin level is low and has scheduled me for an iron infusion. I am really confused...has anyone else had iron infusions when on ibrutinib? Is low ferritin caused by ibrutinib?

Will see my hemo/oncologist before I go get the iron transfusion! Don't want to have transfusion if it is not necessary

[81ue]

Hi - I've never heard of iron infusion. Have you put iron rich foods in your daily nutrition plan and it doesn't help? I hope your hemotologist will have ideas on alternatives to infusion for you

[PlanetaryKim]

How low is your ferritin, Joyce? Unless it is super low (like 4), and unless you cannot tolerate any form of oral iron supplementation, I would be surprised by a doctor going straight to iron infusion to increase someone's ferritin. Just yesterday I was in an infusion clinic where the woman next to me was getting an iron infusion. But her ferritin was 4, and she had a long history of not being able to tolerate any oral iron supplement. Good idea to talk to your hem/onc before getting this infusion.

kim

[joycecanada in reply to PlanetaryKim]

Hi Kim...It is the Kidney clinic that has ordered the iron infusions. I have chronic kidney disease probably caused by my past chemo/radiation for colonrectal cancer. I cannot tolerate oral iron supplements because of colon surgery damage. The kidney clinic also gives me EPO injections, the cancer centre could not give me EPO (financial?) but the kidney clinic could supply me. I am being taken care of by two specialists, good things...but sometimes one does not agree with the other. Just wondering in anyone else on Ibrutinib has taken iron infusions???

[lucyjack]

Hi, i had been on ferretin medication but it didnt make mych difference. Last october i was given iron infusion and my levels have been fine ever since. Not on ibrutinib but start chemo today. Hope this helps.

[shazie]

I have the same issue, Imbruvica & low Ferritin. No one in my medical team can understand how and why? The only conclusion is Imbruvica has caused my low Ferritin. I take iron supplement daily but it has a very low impact on raising my Ferritin. They refuse to give me any iron infusion. Iron Supplements have many unpleasant side effects. Also, you should learn when to take it and what other supplements or foods to avoid. Definitely, talk to an oncology pharmacist before taking iron supplement.

[joycecanada]

Shazie...Did they explain why they did not want to give you iron infusions? I cannot tolerate iron supplements and I have difficulty with digesting "meat" because it gives me horrible digestive problems. I am doing well on ibrutinib (had a bad reaction at the beginning) but thank goodness this time everything seems to have settled down. Then I get the Low ferritin diagnosis...ibrutinib caused???

[shazie in reply to joycecanada]

Yes, my oncologist does not want to risk the infusion reaction which hardly ever happens. I know many people that felt a lot better after iron infusion without any complications. I hate iron supplements too. My oncology pharmacists suggested Slow Fe which realises in your system slowly but you need to take couple of them at different times which makes things more complicated.

I wish he would just give me a shot.

[Miller1960]

I have had low iron since I've been diagnosed with Cll. I've had four iron infusion over the past four years.The infusions went well and really helped me feel better. They are not easy to come by as you need to be under a certain number, not sure what that is though.Hope your levels improve.

Miller 1960.

[joycecanada in reply to Miller1960]

Hi Miller 1960. I have no idea what my numbers are for my ferritin level. The iron infusions are being administered by the kidney clinic. I have arranged a quick appointment with hemo/oncologist prior to going for transfusion, I really want to have her input into this transfusion treatment. I'm on ibrutinib and I know that it does have some very stringent "no" to some drugs etc. haven't read anything about iron infusion....just checking

[joycecanada]

Blood work to-day.... finally some light at the end of the tunnel. HGB 116 highest it has been in 10 years. WBC 8 platelets at 264. Ibrutinib, EPO and iron infusions now appear to be doing their job! Fingers cross this is going to continue yippee!!!

[joycecanada]

Blood check to-day HGB 122 finally I am in the "normal" range.

WBC 7.8

platelets 189

Ibrutinib is doing its job ...bone and muscle pain continues, but I am hopeful that this will get better with time!