Imbruvica & Hydrea treatment?

[ladymoyock]

I’ve been on the above meds for 3 months but WBC still hanging around 200k. RBC, HGB and HCT dropping. Energy is low and taking other meds for Crohn’s disease and PID (Stelara & Hizentra subQ) Anyone have any thoughts on this? I’m thinking maybe Stelara & IgG med is keeping my CLL meds from being more effective?

Just feeling stuck in a loop. Was on W&W for 4 yrs before fatigue & doubling of WBC started my treatment. Anyone have probs with stubborn WBC?

[cllady01 Former Volunteer]

ladymoyock, I am not sure I understand here, but in regard to the prescription for Hydrea--is that, as I read, because of high platelet count?

[ladymoyock in reply to cllady01]

I stared the hydrea bc the Imbruvica wasn’t bring my WBC down.

[cllady01 Former Volunteer in reply to ladymoyock]

Are you seeing a hematology/oncologist? I don't know in what country you are, so do not know what your possibilities of Drs. are.

There are instances that lymphocytosis (high lymphocyte counts) do happen with Imbruvica and take a bit longer (some sooner than others but some have a very long existence) to come down than in others. But, I do not know and cannot address whether that is the case with you or if any medications are interfering/interacting with the Imbruvica.

If you have not had the discussion with your CLL Dr. it would be a wise thing to to do, if nothing else, to settle your mind about what is happening.

Sorry to not be able to address the situation, but CLL is so different in each of us and when we have other diseases requiring treatment medications, too, that makes it very difficult for you, the patient.

Without having any medical training, we can maybe give some experiences, but not always---as you know you have a special case cancer with at least two other special needs.

Please, talk with your Dr. and when you feel comfortable doing so, let us know what is determined. Best Wishes.

[bkoffman CLL CURE Hero in reply to ladymoyock]

Please get a second opinion from a CLL expert. There is no role I know of for Hydrea in CLL. It is not used to lower lymphocyte counts.

[Jm954 Administrator]

Hi there,

I may be wrong but I'm unsure why your Dr would think that the Hydrea treatment would bring your white cell count down when it's your lymph count that needs addressing. It is used in cases of Chronic Myeloid Leukaemia occasionally prior to using a TKI or Tyrosine Kinase Inhibitor treatment. However, Ibrutinib is a Bruten's Kinase inhibitor and works on a completely different pathway to the TKI. The Hydrea will not treat your CLL but may well have the unfortunate side effect of depressing your neutrophils and platelets which you do not want.

Typically, you would see your lymph count go up when you start Ibrutinib as the lymphs are flushed out of your nodes and they can take a while to come down again so I wouldn't be too concerned that your lymph count is still high at this stage.

I am concerned that you may be on the wrong treatment (Hydrea) for the wrong reason. Please get another opinion, from a CLL expert if you possibly can, as soon as possible.

Please let us have an update when you have one, with best wishes

Jackie

[ladymoyock]

Thank you for your thoughts. I am seeing an oncologist/hematologist in the US. I have had the conversation with the doctor and we’re still just waiting to see if these meds will work. My lymph count is 195.83 & 97.8%

[AussieNeil Partner Administrator in reply to ladymoyock]

Given you are in the USA and your personal concerns and the concerns of my knowledeable co-admin on these matters, I would strongly encourage you to take advantage of the excellent CLL Society Expert Access program:

cllsociety.org/cll-society-...

This program will provide you with a free video consult with a recognised CLL specialist.

By the way, the Hizentra subQ will have no effect on your high lymphocyte count. It's just boosting your immunoglobulin G, antibodies that reduce your risk of infection. Many of us in this community, including myself are on this or the equivalent IVIG protocol. Low immunoglobulin counts are a common symptom of CLL, more so when we have treatment for our CLL.

Neil

[ladymoyock in reply to AussieNeil]

Thank you for the information & link. I will definitely look into this. I had gone to a CLL specialist @ Duke when I was first dx for a second opinion but have not been back since. May be time to set up another appt.

Thanks to all for your help. God Bless and will keep you posted.