CLL Questions

[Mamagriz]

My Dad has been diagnosed with CLL and CML at 86. He has become more symptomatic and they want to give him Calquence. He already has afib, bruising, COPD, fatigue and I have to do everything for him physically because of weakness and low blood pressure. Given his age, he will be 87 in December, I don't see how this will increase any quality of life especially since he already suffers from conditions that are the same as side effects of this medication. He also has a catheter due to inability to empty his bladder. I can't find any information about this medication and someone his age. Any thoughts?

[AussieNeil Administrator]

Further to Spark_Plug 's helpful reply, to be diagnosed with both CLL and CML is quite rare and the treatments (if any) are quite different. CML is treated with another inhibitor drug called imatinib (Gleevec), though with both CLL and CML being chronic conditions, perhaps the CML doesn't yet need treating. (Importantly, because CLL is a B cell lymphoma and CML is a myeloid blood cancer, the drugs work independently - neither will improve the other blood cancer.

Have you discussed with your Dad the option of arranging a second opinion? Living in the USA, you should be able to arrange a free video consultation with a recognised CLL specialist via the CLL Society's Expert Access Program cllsociety.wpengine.com/pro...

Acalabrutinib is a fairly gentle, slow acting drug and it is used to successfully treat older people like your father. Just because a side effect is listed, doesn't mean that it will occur; some people have no side effects from taking acalabrutinib. The risk of afib is an understandable concern; your Dad may be more at risk of his afib worsening, given he already has it. The incidence with acalabrutinib and another second generation BTKi drug zanubrutinib, is lower than with the first generation inhibitor ibrutinib. The good news is that some of his other health challenges might well improve if he takes acalabrutinib; CLL infiltrates the bone marrow, reducing blood cell production. Hence possibly the bruising from a low platelet count and the fatigue, which might be primarily due to anaemia, but could just be due to his CLL and CML. Just be aware that bruising and anaemia can worsen initially before they improve, because acalabrutinib can also suppress bone marrow production, so it can be a while before the bone marrow is cleared sufficiently for the extra production capacity to overcome any suppression. With respect to his low blood pressure, interestingly the risk of nearly all the side effects associated with acalabrutinib decreases over time, with the exception of the development of high blood pressure, so that might be one side effect you'd like him to experience!

If you and your Dad do decide to proceed with acalabrutinib treatment, you are obviously well placed to be able to closely monitor his health for changes and jointly decide whether continuing on with acalabrutinib is indeed improving his quality of life. He's fortunate in having you there as his advocate and carer.

Neil

[Mamagriz in reply to AussieNeil]

This is through the City of Hope in Long Beach and his doctor is a Hemotologist Oncologist. Is there someone even more specialized in specific cancers?

[AussieNeil Administrator in reply to Mamagriz]

That your Dad has a Hemotologist Oncologist is a good start, but again the CLL Society can help with a list of recognised doctors with proficiency in managing CLL cllsociety.org/newly-diagno...

If there aren't any City of Hope Long Beach doctors in the list, there are others listed in the LA area and you can ask for member recommendations here too.

Neil

[Mamagriz in reply to AussieNeil]

Thank you

[LuzyCLL in reply to Mamagriz]

Dr Alexi Danilov at The City of Hope is a leading CLL researcher and hematologist.

[Mamagriz in reply to LuzyCLL]

Thank you

[Mamagriz]

He is afraid of side effects because his activity is already so limited. He watched my Mom get so sick when they tried to treat her MDS 3 years ago. So I really don't know what to say to him. I don't know the percentage of people the drug helps in his age range.

[cajunjeff]

Hello Mamagriz, you are asking a good question. Your question is probably better put to a doctor who knows more details about your Dad’s overall health and whatever stage of cll he is in.

That said, having been involved in the care of both of my parents where we had to make hard decisions about the benefit of medical treatments as they relate to quality of life, I can give some lay input to you.

It is not uncommon to hear of cancer patients turning down harsh chemotherapy treatments which may extend life, but come with such side effects that it’s just not worth it. For many if not most people, however, including me, calquence is not a hard drug to take and certainly not like most chemotherapy drugs in terms of side effects. Calquence is a targeted therapy drug, not chemo, and involves taking a couple pills a day.

If your father’s fatigue is related to his Cll, calquence might even make him feel better. On the other hand, it might exacerbate his afib, although calquence is thought to carry less risk of afib than first generation drugs of that class.

I totally get where you are coming from. I just wanted to weigh in and let you know that many people take calquence and have no side effects. I lean towards giving calquence a chance. It’s a very effective cll drug and to the extent any of his symptoms relate to cll, it might make him feel better. If he has side effects from calquence that outweigh the benefit of it, then just quit the drug or try a lower dose.

Of course I want to be careful not to give any advice of a medical nature. I suggest you take this up with the doctor who prescribed him calquence and share your quality of life concerns. I think most doctors will understand where you are coming from and help you and your dad make the right decision. And I want to echo what Neil said, your dad is fortunate to have you in his corner.

[Mamagriz in reply to cajunjeff]

Thank you. Do you think his age and lack of mobility is a significant factor to consider?

[cajunjeff in reply to Mamagriz]

No, based on my experience with calquence, I don’t see an issue with age or lack of mobility. It’s an oral drug taken twice a day. If his fatigue is cll related, calquence might well make him feel better. I am not a doctor though, so I still think it’s a good idea to address your concerns with his doctor. From my standpoint, if your dad is among the few who report significant side effects from calquence, he can just stop taking it.

[Skyshark in reply to Mamagriz]

That will have been one of the criteria used when selecting Acalabrutinib.

uptodate.com/contents/image...

"Continuous therapy is given until progression or unacceptable toxicity. When selecting among the BTK inhibitors, we prefer acalabrutinib or zanubrutinib rather than ibrutinib as acalabrutinib and zanubrutinib appear to be at least as effective and better tolerated than ibrutinib. If the goal is best efficacy with acceptable tolerability, we offer zanubrutinib. If the goal is best tolerability with good efficacy, we offer acalabrutinib."

So long as not relapsed or refractory he can switch to zanubrutinib if acalabrutinib causes problems. If relapsed or refractory then Venetoclax is the next option but that requires functioning kidneys, drinking lots of water or saline IV during ramp-up and lots of blood tests.

Infections from catheters are unfortunately common, you need to guard against this.

[Bubnojay]

Hi Mamagriz

already you have received excellent more technical answers from our friends here on HU.

I venture, as someone in my 80th year to offer a different option, and maybe a more simple and caring one. Ask your much loved father a simple question, what do you want to do Dad, without confusing him with any options. Make it clear that it is his decision. Then, abide by whatever he wants to do. In his position I would not want my children to be in the position you are in, it would trouble and upset me, all this fussing about to take or not to take additional medication that may or may not help.

His quality of life is such that it could be wrong to prolong it without him wishing it.

I would want to know I have the love of my children and their respect.

Be strong and there for him what ever he decides.

Bubnojay

[Lancerlady]

I’m on calquence and it works for me. I believe it has increased my quality of life. I have stage 4. My numbers are stable with this medication.

[BeckyLUSA]

I strongly agree with Bubnojay, I would let him make the single decision to decide if he wants to be treated or not. Plus starting a treatment does not mean he has to stay on it. If he does try treatment and things get worse he can stop it.

[Drich]

I had very good results in a short time from Calquence but it DID beat me up... and I'm 58.

[AmCLL]

Hi Mamagriz,

I agree very strongly with Bubnajoy, Quality of life matters more at this point in your dad’s life than Quantity of life, however your dads opinion and wishes take precedence over all.

Medications work well for us at times and at other times they could be troublesome, trial and error is the best way to find out.

Not a a lot of people have the opportunity or the desire to serve their parents as you do, for that a grand salute to you.

[Okeefish]

Mamagriz—- I am 85 and have many of the same maladies as your Father? I have had CLL for 23 years and have been on Calquence for about 3 years! In my opinion, the side effects are very minimal and the headaches only last a week or two? Two cups of coffee and they go away much of the time! Trying the Calquence is my suggestion, as they will lower his WBC and stop any discomfort in bones from being packed with cancer cells. It will be easy to stop, if the results become intolerable? I strongly believe that nothing ventured, nothing gained! Good Luck to you and your Dad and God Bless you both! 🙏🙏🙏❤️❤️❤️

[Mamagriz in reply to Okeefish]

Thank you