B Cell PLL, Extreme Fatigue, On ibrutinib, Chest infection, Low Haemoglobin

[B-PLL_Pakistan]

My father, 65 years old, was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 cycles of Chemotherapy (Rituximab+Bendamestine) Aug. 17 to Jan. 18.

Before chemo Spleen size became 29 cm and after chemo it reduced to 20 cm and blood figures became satisfactory.

After chemo he faced repeated chest infections and got hospitalized thrice.

The disease relapsed in Jan. 18 and now he is taking "ibrutinib" (Bangladesh made) from last 3 months.

Now he is hospitalized again for chest infection and flu. He is feeling severe fatigue and even can't talk. Haemoglobin dropped to 7.3 and received 500ml packed cells blood. His Haematologist is satisfied with blood but spleen size has again enlarged to 29.6 cm.

Is ibrutinib last option for the disease ? And can US made ibrutinib make difference ?

Please advise.

Aftab Khan

Quetta, Pakistan

[Hidden]

I have b-pll also, I went straight to ibrutinib. USA ibrutinib base ingredient made in China.

B-pll is treated as Ultra high risk cll. So all drugs that could be used for this can be used for your father.

Since so few patients have b-pll you will not find any drug with an indication for it.

another b-pll'er on this site is using venetoclax/rituxan with good results.

[Hidden]

Scott-thats true in countries that honor 'worldwide patent laws'. However Bengladesh may not honor patent laws-or have no law that forbids it. Inthat case there are a few things that can happen. If a production facility can handle it-and if they are legit in making it. Assuming they are legit then the ibrutinib her father is using is probably aok. Assuming they are not making phony ibrutinib. There are a lot of 3rd world countries that do not honor patent laws.

[AussieNeil Partner Founder Admin in reply to Hidden]

A growing spleen and worsening anaemia implies either that the Bangladeshi "Ibrutinib" is not a working version of the patented drug, or the dose is not adequate or that resistance has developed.

Aftab Khan, before switching to a genuine version of Ibrutinib, it is important to know exactly which of these situations is behind your father's apparent relapse. Have you heard of the experiences of others taking this Bangladeshi Ibrutinib?

Your father would probably see his CLL improve on Venetoclax or Obinutuzumab, which avoids the need to work out which scenario has happened. Taking either of those drugs might mean that he will respond well enough to only need the drugs for a limited time, though with his CLL worsening, that's not likely. There are second generation versions of Ibrutinib, such as Acalabrutinib and Zanubrutinib that he may respond to even if he has become resistant to Ibrutinib, but without sophisticated testing of his CLL it's not possible to know. I'm sorry that your father is in this situation.

Neil