i informed in my last post about my father advised to start acalabrutinib soon . but it was paused for some time as we admitted him in hospital last to last week due to sudden onset of fever and cough . after a 5 days course of amoxicillin followed by first IVIG the fever went down & it took 4-5 days for the cough gradually settle down.(looked like a viral or bacterial infection this time)
Doc had a plan to start acalabrutinib during that hospital stay initially watching him closely of how he responds to it but was not able to implement it as he noticed consolidation patch in his lungs .Doc is in dilemma now if this patch is still persisting due to the fungal infection which he caught on october and on voriconazole since then or is new patch that has arissed due to the recent infection.
he thinks if the fungus still alive in his body then starting the Acalbrutinib treatment will create a mess and further detoriate my father's health. we were sent back to home this saturday to have a follow up next after 2 weeks for his second infusion of IVIG and a repeat chest CT.
i pray god for the consolidated patch in his lungs to clear by then and the doubt of persisting fungus goes away with it . want all your good wishes and prayers for my dad he has been through a lot of pain this whole 2022 by acquiring 2 deadliest infection tuberculosis and cryptococcus fungus.
I am so sorry your father is going through such a horrifying experience. I am sending good vibes and prayers that everything will be better when he goes back in 2 weeks.
yes last 2 years had been very worrisome for me and my younger brother . My father being the single parent to us we tried all means to keep him on long wait and watch changing his diet to vegan with carrot beet root juicing and some herbals to boost his immunity .
he was very active with good energy and blood work on each monthly test untill 2022 feb had he not caught these 2 infections ,which i suspect is the cause of his disease progression else he would have made to couple of years more W&W . I feel the toxicity of tuberculosis drugs (7months he took) and antifungals (4 months) has led to this complex situation he is in now.
Anyways i am seeing a hope with Acalabrutinib may this can improve his health .
let me update here in India Acalabrutinib is way too costly and not covered in insurance we have decided to go with the Generic form of the Drug called Acabrunat manufactured by NATCO pharma limited upon doctor suggestion.
If any one here in this forum has any idea of effectiveness or experience with this drug .kindly share
thank you all for the kind reply and concern. from the time i have started following this forum i feel a bit relaxed and optimistic
Not sure about your statement re: "acalabrutinib is too costly in India".
It's a bit confusing, because generic names (like acalabrutinib) are noted by Not Capitalizing them, whereas brand names (like Acabrunat) are. Except that every word at the beginning of a sentence is capitalized. Thus, any post here where people have written about "acalabrutinib" or "Calquence" will mean the same as Acabrunat. And since the drug name may be the first word in the sentence, you will see a lot of "Acalabrutinib XXX" because it happens to be the first word of the sentence. You can do a search of the generic, and other brand, names here and read many, many posts. People have spoken about their side effects, what happened as they started treatments, how their disease responded and labwork/symptoms changed.
Having his immunity suppressed to where he has had the TB and the fungal infection is indeed a distressing problem. At some point, doctors may treat the CLL carefully anyway, with medication. It's not ideal for immune suppressed patients who have an infection to get immune suppressing treatments, but I have seen it done, although it's been rare.
At this point, it may be sort of like the immune suppressed HIV patients who may have an infection, but still need to treat their HIV. Because the HIV taking over, is the reason they are getting the infections. So they take HIV immune suppressing meds, even with an infection, if the infections won't clear.
I am sorry to hear you are having to deal with all this.
As long as you are aware that the drugs are not identical. The brand Calquence contains acalabrutunib, the brand Akabrunat is acalabutinib dihydrate. It is not the exact same chemical. I looked closer at this today, and I am not sure if Astra Zeneca is going to challenge this or not. At first glance, it seems this company is saying their drug is the same as Calquence; I thought it was initially too. Please ask this company for efficacy studies. I don't know the rules and regulations in India, but in the US a company could not change a drug slightly and market it, without showing that it works. Especially if the packaging implies it is an equal substitute for a similarly named product.
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