Hypercalcemia Calcium levels shot up to 26

[theoptimistduo]

Has any of the CLL patients faced this issue?

My husband was having episodes of unexplainable fatigue since a fortnight..

continuing fall in weight and total loss of appetite

past three four days he appeared dizzy and disoriented. On bed full day.

Our CLL doc asked us to admit him immediately

Blood test reports showed critically high calcium ( 26 😟 ) and creatinine (2.2)

due to this his activity slowed down, almost no responses and reactions to things. Is in icu and going through aggressive treatment with steroids to bring calcium down

Just got to know his calcium and creatinine have come down to normal but his responses and activity are still very slow

Has someone faced a similar situation in the CLL JOURNEY?

it was one of the most scary experiences we had

He has had multiple relapses and currently is on OBINUTUZUMAB + Venitoclax + acalaibrutinib combination but unable to continue medications due to repetitive side effects .

[AussieNeil Partner Founder Admin]

I see that you have also posted here:

healthunlocked.com/cllsuppo...

I've left this post open, as you have asked a specific question, but again mention that you are likely to get more replies if you make this post closed to this community. I would also recommend members read your bio (thanks for completing it), before responding.

I hope the latest interventions are quickly successfully so that your husband can resume his AVO treatment, which from personal experience, is a very good CLL treatment.

Neil

[theoptimistduo in reply to AussieNeil]

thanks for your advice AussieNeil

We are also hoping that he achieves normalcy and his AVO can be restarted

[Jm954 Administrator]

I'm sorry to hear this, especially as your husband is so young and has already endured several treatments.

It sounds as though the ICU doctors are getting on top of his raised calcium and creatinine, both of which will make him feel lethargic and unwell. The question after that will be why did this happen, is there an underlying problem that may cause it to recur? I think those are the questions I would be asking. More investigations may be needed.

Sending best wishes

Jackie

[theoptimistduo in reply to Jm954]

He had a minor hypercalcemia episode and high creatinine in July this year also

There sure is a trend that is developing

Despite the downfall in calcium and creatinine to normal today , his response rate and speech is still not normal

Therefore the doctor has adviced a MRI of brain and spleen just now

Will keep posting the updates

[Jm954 Administrator in reply to theoptimistduo]

Thank you for the reply, I look forward to hearing that he's improving.

[Alex830]

So sorry your husband is experiencing this setback. I assume they have checked him for multiple myeloma. My CLL is acting somewhat like MM. At start of treatment I had high creatine of 2.1, acute kidney failure, IgG deposits in kidney and heart, calcium wasn’t nearly as high as your husband but elevated. CLL and MM at the same time is rare but does occur. My bmb came back just for CLL but my specialist is still not convinced, we are doing some additional genetic sequencing.

[theoptimistduo in reply to Alex830]

this is a very different perspective you’ve introduced me to . Never thought of this as a probability.

Shall discuss about this with the doctors.

His calcium has elevated in just a few hours again

It’s fluctuating every 8 hourly

Started with 26-19-18.1-9.6-15-15-13 ( currently)

Creatinine too is elevated again

[Alex830 in reply to theoptimistduo]

My calcium was around 15 I believe. I needed a bone marrow biopsy to rule out MM. After just the kidney biopsy both my nephrologist and oncologist believed they were dealing with MM because of my symptoms. Hypercalcemia and kidney involvement could be symptoms of MM but there have been some rare cases like mine where CLL is the culprit. Hope you will have some answers soon. Keep us informed.