Biopsy results

[Gile]

Hi, my boyfriend has CLL and is struggling with his hemoglobin and neutropenia. His numbers are not getting better. Doctors had to give him multiple blood transfusions and neupogen shot. Even with those, the numbers remain low. He is under Venetoclax treatment. Next week will have a bone marrow biopsy. Due to COVID-19 situation, I can't be present in his doctor's appointment. Can you guys tell me what else it could be? I'm scared, like many of you, I'm sure. Thanks for this support.

[Jm954 Administrator]

Hi Gile and welcome as this is your first post.

It's really not possible for us to make any useful suggestions with the limited information that we have. However, I would say that it's good that he's having a bone marrow biopsy (BMB) as that should give his doctors the answers they need.

Let us know what his (BMB) results are like and what they have suggested.

Best wishes

Jackie

[Gile in reply to Jm954]

Thank you and I'll keep you updated

[cajunjeff]

In response to the what else could it be question, the first thing that comes to mind for me with hemoglobin so low that transfusions are necessary is hemolytic anemia (AIHA). AIHA can be a complication of Cll where our own body attacks our red blood cells. It is usually treatable.

I would think if your boyfriend had AIHA his doctors would have discussed it with him, it’s not hard to diagnosis it. So I would think that’s not it, but I have seen people on here post sometimes where they had AIHA, but never had it explained to them.

Of course this is not to say what your boyfriend has, no one on here can say from such limited info. I do think for rapidly crashing hemoglobin numbers in a Cll patient, AIHA would be a prime suspect. Good luck to you guys.

[Gile in reply to cajunjeff]

Thanks, they haven't discussed any diagnosis yet. That's why they decided to go for the biopsy. I don't know, hope to have good answers after the test. Thank you again and keep you posted.

[Jm954 Administrator in reply to cajunjeff]

I'm pretty sure this is not AIHA because that is easy to diagnose from a blood test. In addition the neutrophils are low and that is not the case with HA. A bone marrow is the only definite way of assessing what is going on here.

Jackie

[cajunjeff in reply to Jm954]

Yes that’s pretty much I wrote, that is, I would think if it was AIHA his doctor would have told him as it’s an easy diagnosis.

It’s still worth asking the doctor as I do think this type of diagnosis is not always clearly explained to people and the very low hemoglobin sounds like a possible autoimmune issue which may or may not be related to low neutrophils.

Hopefully it gets cleared up by the biopsy.

[HopeME]

Gile: I went through exactly what your boyfriend is experiencing. The good news is it was resolved with time and the benefit of treatment. Unfortunately, my doctor at the time didn’t explain the problem to me either. Sometimes doctors are busy or think the patient is unable to understand so they don’t try to explain the situation. What he is experiencing does happen and the doctors are doing the bone marrow biopsy to get more information.

You can help by making a list of questions for him to take to his next appointment. Also, suggest that your boyfriend ask permission to record his next appointment so you and he can subsequently review and develop more questions for his next meeting.

Better days are ahead. Good luck.

Mark

[Gile in reply to HopeME]

Thank you so much Mark

[Palmetto in reply to HopeME]

My husband always does FaceTime with me during his oncology appointments so that it's almost like I'm there in the room hopefully this is an option for you

[lankisterguy Volunteer]

Hi Gile,

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As Jm954 , cajunjeff and HopeME have said, we cannot and should not try to diagnose anyone's medical complications.

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Your boyfriend's doctors have about 14 years of medical training more than most of us, and by now they have certainly begun the process of "differential diagnosis" where they use tests like the Coombs test webmd.com/a-to-z-guides/ant...

to detect issues like AIHA - en.wikipedia.org/wiki/Autoi...

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For your own reading and learning, there are other auto immune conditions like Evans syndrome rarediseases.org/rare-disea... that may be a cause of the low red and white blood cells. I only offer these to reassure you that there are ways to test and narrow down a diagnosis. I feel certain they are trying to figure it all out.

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One of the suggestions that might help you participate and support your boyfriend is to ask if he or the doctor can involve you in the discussion by calling you via a cell phone and allowing you to listen in during the visit to the doctors.

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Len

[Gile in reply to lankisterguy]

Hi Len, thanks for your response and information. We have done that before, having me on the phone while they were in the room discussing his diagnosis/treatment. For sure the best option is waiting for results and doctor's opinion. I'm just desperate looking for answers and this group is phenomenal. Great support.

[Smac29]

Hi Gile,

I’m sorry you are both struggling right now. My one suggestion would be to have your boyfriend put you on speaker during his appointments. And you both can ask questions. This is what we are currently doing with my moms appointments.

Wishing you the best.

Sheryl

[Gile]

Thanks Sheryl 😊

[1ofakind]

Understand your anxiety ... the unknown is frightening but you are definitely helping by being there for your boyfriend ...

Knowing that he has you in his corner is very helpful ...

The suggestions here are helpful and being there even on the phone means that there are another set of ears to hear the results ...

Good luck going forward and looking forward to hear good news about his progress ..

stay strong , and Be well!

[Gile in reply to 1ofakind]

Thank you so much. This is a battle that involves not just the sick one, also their family and closest ones.

[Smakwater]

Hello Gile,

You state that his numbers are not getting better. This brings to mind a few questions from my consideration.

You need not answer this response on the forum, yet you may want to consider if they have any useful possibilities.

1. Does the "numbers not getting better" include the neutrophil counts after having neupogen injections?

2. Has there been any discussion with the doctor related to decreasing or discontinuing the venetoclax dose temporarily?

3. How long has he been on the venetoclax?

4. Does the doctor have a primary observation objective for the bone marrow biopsy, or are they simply looking for abstracts?

5. If there is an objective observation with the biopsy, what is it?

As it has already been said in anger response, and I agree, "it's good that he's having a bone marrow biopsy (BMB) as that should give his doctors the answers they need."

Hope you get good answers, and resolves.

JM

[Gile]

Hi JM, thanks for your response. I hope results of BMB give me those answers and obviously solutions.