anemia

[Gino23]

I have been on watch and wait for three years, I mostly had SLL, with alot of lymph node involvement. The last couple of months my hemoglobin and hematocrit are going down, has anyone else had this problem? What does this mean?

[cajunjeff]

Hello Gino, you might get a better answer if you shared what your last few labs were for hemoglobin.

Generally speaking, our cll causes our hemoglobin to drop over time. It’s usually a gradual decline.

If our hemoglobin starts going down more rapidly, that could be a sign of either advancing cll, hemolytic anemia, or both.

It’s certainly something you should consider discussing with your doctor. It’s unclear if your hemoglobin is even out of normal range. Good luck.

[AussieNeil Administrator]

Hi Gino,

Your Hematocrit (HCT), which can also be called packed cell volume, (PCV) measures the amount of volume red blood cells occupy in your blood. The amount of haemoglobin contained in red blood cells varies, so your haemoglobin count is a better measure of anaemia.

The development of anaemia is a common problem as CLL/SLL progresses and increasingly infiltrates our bone marrow, reducing its production capacity. There can be other causes of downward trends in your red blood cell/haemoglobin counts, with two other causes also CLL related; an enlarged spleen (a specialised node) filtering out more red blood cells before their 'use by date' and auto-immune haemolytic anaemia (AIHI). where B cells incorrectly make antibodies that cause the destruction of red blood cells. Non CLL related causes for your developing anaemia need to be ruled out by your general (PCP/GP) doctor. They can order a fasting blood test to check for essential nutrient levels (iron and B vitamins) to determine what's probably happening.

The anaemia related trigger for starting treatment for your CLL/SLL is when your haemoglobin drops below 100. (Normal range is around 130 to 170 depending on your pathology lab, plus it's a bit higher for men than women.)

Neil

[Gino23 in reply to AussieNeil]

Thank you for your reply, my spleen is Normal in size and my hemoglobin is 10.6, my CLL specialist is doing more bloodwork in the next month. Just so afraid treatment will have to start soon

[AussieNeil Administrator in reply to Gino23]

Your specialist may find another cause for your anaemia, but if you do need to start treatment, you are in excellent hands if you are still seeing Dr Lamanna and treatments nowadays are much better than they were. There's generally a reasonably wide optimal window in which to commence treatment, but you don't want to delay starting too long if you want to avoid needing transfusion support until your bone marrow recovers from the impact of CLL/SLL and the treatment drugs.

Neil

[Redkatt in reply to AussieNeil]

If you have CLL and your haemoglobin drops below 100 what treatment would be offered? Does it depend on which other symptoms you might have?

[AussieNeil Administrator in reply to Redkatt]

Specialists look at the kind of damage that turned a healthy B cell into the cancerous CLL/SLL cells to determine which treatment will work best. That's provided by your FISH test results (specifically 17p del), TP53 and IGHV mutation status results.

Neil

[Redkatt in reply to AussieNeil]

Would the FISH test have been done to diagnose CLL or is it done when treatment is being considered?

[AussieNeil Administrator in reply to Redkatt]

FISH testing is prognostic - it checks for the commonly found genetic defects in CLL/SLL. The best and most common defect is 13q del, then 'normal' (none of the common defects found), trisomy 12, 11q del (associated with bulky nodes) and until the availability of targeted therapies, 17p del). Flow cytometry is the diagnostic test for CLL/SLL, used to differentiate it from other leukaemias/lypmphomas.

Typically in countries with universal health care systems, FISH testing is done prior to starting treatment, though it might be done at diagnosis when the CLL/SLL appears aggressive. That's because FISH test results can change over time and they determine treatment options, so they fall into the 'nice to know' category at diagnosis. Anyone who is impacted by their CLL/SLL sufficiently to consider a career change, should definitely push for FISH testing and other prognostic markers to help them decide.

Neil

[Redkatt in reply to AussieNeil]

Thanks for the explanation of the FISH test and when it is most likely to be done. Makes much more sense to me now

[Melina26]

mine is also declining (CLL). My doctor is monitoring and says when it gets low enough she will treat. These falling levels make it harder for us to fight off infections so use your hand sanitizer and avoid sick people as best you can.

[MovingForward4423 in reply to Melina26]

HB < 100 You will start to see symptoms of Anaemia .

[Gino23]

thank you

[kablea]

My fall some 6 years ago was said to be due to my vegetarian (almost) diet. I was put on a course of tablets to lift my iron levels and took to eating meat, especially liver, and no problems since.

[Redkatt in reply to kablea]

How long did it take for your haemoglobin to get back to a reasonable level?

[kablea in reply to Redkatt]

The course of tablets was for 6 months and, though not tested until 6 months later, I felt back to normal well before the 6 month point.

[Gino23 in reply to kablea]

Thank you

[Gino23]

mine started declining in October 23, I don’t know what the next step will be?

[Bobby9toes]

I’m not sure what it means. I was diagnosed with SLL in January of this year so I’m new to all of this. Maybe some day I will understand what all the blood test names mean. My doctor put me on Acalabrutinib (Calquence) after my Pet scan. My hematocrit and hemoglobin were below normal at that time and have gone up to normal since I started the medication. I have another PET scan in a few weeks to see how well the medication is killing off the cancer cells in my lymph nodes. I wish you good luck in this new journey.

[BlueIvyDog in reply to Bobby9toes]

I was diagnosed in 2020 with sll and I am trying to learn all the blood work names as well. Very confusing right now. I am on watch and wait. Best of luck on your treatment!!

[Gino23 in reply to BlueIvyDog]

Not sure if I need treatment, so far, thank you

[Gino23]

thank you, hope the medication has worked for you!! Good luck to you tooo!!

[Floorfax]

Hello Gino; I've had CLL for about 7-8 years & all of that time up to this past October were on the "wait & watch" routine. All during that time my white cell count was in the 18 - 22 count range and both my hemoglobin & platelet counts started to go down - gradually - but down none-the-less. The last 6 months to 1 year, I started feeling anemic. Had no serious pains with my lymph nodes or spleen - only mild swelling in the spleen, too, but man was I tired and weak all the time! Finally in early August, my #s went really south. My hemoglobin dropped to 6.5 after I overdid it in the heat of the desert summer trying to move & my platelets dropped to 47. My white cell count interestingly enough also dropped to 18, but it was clear after extensive testing at the Mayo Clinic that my CLL had gotten to the point where I required treatment. So - I went in for the 1-year Obinutuzumab & Venetoclax combination treatment and have started to recover. My anemia has gone away & my blood #s have returned to normal. I'm not done with the therapy yet, but the good news is I'm heading in the right direction!

I would strongly suggest you keep up with blood work - at least do that every couple of months with your oncologist until you can determine what direction your blood #s are heading. Also keep a log of how you're feeling. If your anemia gets worse, tell your Doctor. The CLL treatment I got "should" also work with your SLL - they're pretty much the same thing, but I'm certainly no expert!! Best of luck & I'll be praying for you! Keep us all posted on your progress.

[Gino23 in reply to Floorfax]

Thank you, good luck to you toooo!

[Silvafoxe]

I suppose there may be others more qualified to respond to got question. In my case I’ve been anemic most of my life as into the oncologist but about worsened and didn’t improve with medication, he decided to start me on Brukinsa. It has improved but I’m still borderline anemic. The oncologist said he wanted to avoid me having to get a blood transfusion. He said the leukemia was making the anemia worse. What does your oncologist say about the changes in your anemia?

[Gino23 in reply to Silvafoxe]

I will be getting more blood work for the next month and then we will see