low hemoglobin

[Jim-Boy]

hi, diagnosed with CLL for a year now, my haemoglobin now drops to low levels due to bone marrow issue, down to 4 at times, have bone marrow biopsy next week, any others experienced the same, having bi weekly transfusions (2 units) to keep me going ,

[AussieNeil Partner Administrator]

Sounds like you may have Autoimmune Hemolytic Anemia (AIHA), particularly if this anaemia came on suddenly. It's unfortunately more common with CLL. There are 152 posts on this topic healthunlocked.com/cllsuppo...

A bone marrow biopsy should identify the cause.

Neil

[Jim-Boy in reply to AussieNeil]

🤞thanks, hopefully BM biopsy will reveal

[annmcgowan in reply to AussieNeil]

Hi I had AIHA just prior to treatment. My haematologist decided it was best to treat the underlying reason my CLL. I started the Flair trial which went well for me and am now on the Static trial and doing well so far. Your BMB will identify if it is due to your CLL or not.

Good luck

Ann

[Jim-Boy in reply to annmcgowan]

Thank you, yes I think we may be at point the CLL now needs some attention, just be good to know what we’re dealing with, hoping BMB will provide some answers

[Poodle2]

Gosh, you must be feeling very tired. My low Hb was one of the main reasons I had to start treatment - one cannot imagine how mentally draining and physically difficult it is on your body unless you experience it. It seems you might have AIHA indeed. I hope you get the test results soon. I always thought they could test for AIHA by doing a blood test. Hope they figure it out. All the best to you. 🙏🏻❤️

[Jim-Boy in reply to Poodle2]

Thankyou, it certainly gives a new meaning to worn out!

[AussieNeil Partner Administrator in reply to Poodle2]

Yes the Coombs/DAT test checks for antibodies specific to red blood cells, but a bone marrow biopsy will enablevchecking for other causes.

[mickimauser11]

I had this too but because of 90% bone marrow infiltration only a few cells in lymphnodes I was put on venetoclax and received 3 Anasep shots ( Erythropoietin) no I’m up to a hemoglobin of around 10 hope it continues. But it is my third therapy

[Jim-Boy in reply to mickimauser11]

🤞 you can keep the levels up, best wishes

[LeoPa]

Too few info to form an opinion. How are the rest of your blood counts? With hemoglobin that low organ failure is a possible risk. Perhaps you should be under treatment already.

[Jim-Boy in reply to LeoPa]

Quite possibly, has happened quite quickly, biopsy next week will hopefully give some indicators and then start treatment- as stated bi weekly transfusions now scheduled and also EPO vaccines to be self administered

[mdsp7]

💐 Sending you my best wishes that you get back on your feet quickly.

It must be a lot to endure. Strength and courage! 🍀 🙏

[Islandvibes]

sorry to hear hope you get answers and treatment helps.

[whitewsu]

I have a slightly low hemoglobin, but it's been decreasing sharply since August. Still, I've never been that low. So sorry! I hope you get some relief soon!

[Cindi73]

This happened to me. I was diagnosed Apr. 2016. Hemoglobin kept dropping. Nov. 2016 started with blood infusion. Bone marrow biopsy. Biopsy showed marrow was 95% filtrate with leukemia. It was not allowing my red blood cells to grow to maturity. Started treatment in Dec 2016. But that was me. I wish a better outcome for you. Take care.

[Jim-Boy in reply to Cindi73]

hey, how are things now, had my biopsy. 1 hour ago 🤞🤞

[Cindi73 in reply to Jim-Boy]

I've been on Imbruvica since Feb 2018 and doing fine. There's so many different treatments now. The doctors will figure it out. 🙏

[Jim-Boy in reply to Cindi73]

Thankyou, glad to hear you are doing well