Updated my profile.. can someone have a look and advice! Thanks

[theoptimistduo]

Hi everyone

Have updated my profile with all the relevant details about my husband’s case

Would really appreciate if someone can guide us through with a solution!

thank you!!

[AussieNeil Partner Administrator]

Your husband has had a very difficult journey with his CLL. His serious illnesses are also a concern. Irrespective of his chosen treatment, more attention on prophylactic treatment protocols (e.g. antibiotics, antivirals, IgG infusions) as well as protective measures to avoid/reduce infection exposure are essential. The latter is extremely important if your husband decides on a bone marrow transplant, as the treatment he has before his transplant will remove his remaining immunity. Given your husband has been previously treated with venetoclax, rituximab and ibrutinib, I would be concerned about how much of a response and hence length of remission he would achieve from obinutuzumab + Calquence + venetoclax. (Without specialised testing, we don't know if he has developed resistance to venetoclax, rituximab, and/or ibrutinib. If he has developed resistance to ibrutinib, acalabrutinib won't work. Likewise if he now has dim CD-20 expression, obinutuzumab won't work as well as it should). Your husband's bone marrow has also been beaten up by the FCR and R-CHOP treatments.

I'm not medically trained, so I recommend putting the concerns I have listed to the specialist not recommending a bone marrow transplant. You've done very well accessing the latest FDA approved treatments for CLL while living in India. My concern is that you are running out of options unless your husband can join a clinical trial, such as CAR-T or CAR-NK or a non-covalent bonding BTKi drug. Given that's probably extremely difficult, it makes sense to me to replace his bone marrow now. He has age on his side.

Wishing you and your husband a positive outcome from his latest treatment.

Neil

[theoptimistduo in reply to AussieNeil]

Thank you for your reply. What are the tests that are there to test the resistance to certain drugs? Can you name them please?The specialist has planned to give him IGG every three weeks

Is there any other suggestion to boost his immunity? And overall health?

He is taking supplements like Bio C, hespardin, nano pomegranate and nano curcumin extracts and symbiotics right now

He has lost a lot of muscle mass also.

[AussieNeil Partner Administrator in reply to theoptimistduo]

As I said, I'm not medically trained. It's inappropriate even for someone who is medically trained to give advice on line without taking a medical history of the patient, then doing the appropriate tests to determine the best treatment option. Is it possible for you to engage the services of a CLL specialist in another country?

IgG can be considered an immunity transfusion, or more specifically an antibody transfusion, to reduce his risk of infection.

It's unwise to take immune boosting supplements when you have CLL, because they claim to work by boosting lymphocyte production!

Hesperidin is derived from citrus peel and might be useful for some blood cancers, but apparently not CLL that I could find.

Neil

[theoptimistduo in reply to AussieNeil]

We are more than keen to engage with a CLL specialist outside of India.. We tried getting opinions from a couple of specialists in the UK and USA last year but they asked us to travel to their country which wasn’t and still isn’t an option for us keeping in view his low immunity parameters.I would really appreciate if you could guide us about how and with whom should we get in touch with. We are open to travelling also if and when his physical condition becomes better and he is fit to travel.Thanks in advance

[AussieNeil Partner Administrator in reply to theoptimistduo]

If you share the UK and US specialists you were considering, you'll be given feedback from community members regarding their respective CLL expertise. We have a few Indian members and they too have reported difficulties getting access to good CLL expertise in India. CLL is a rare disease and for some unknown reason, considerably rarer in Asia.

Neil

[Poodle2]

I don't have any advice I'm afraid but just wanted to say that I hope and pray your husband gets the treatment that will help and he gets better. I'm sending lots of positive vibes all the way from London. I think Neil's advice is great and hopefully you can get his infections in check soon as that must be making him very weak.

All the best ❤

[cllady01 Former Volunteer]

So sorry to read your husband struggles with infection at a time he is needing to have a new treatment protocol. I know this is a vexing time for you both and you want to do more to help with his situation.

I do not know a way to get you more/different help with his treatment. I do strongly agree with AussieNeil , to quote his statements:

"Irrespective of his chosen treatment, more attention on prophylactic treatment protocols (e.g. antibiotics, antivirals, IgG infusions) as well as protective measures to avoid/reduce infection exposure are essential. "

"It's unwise to take immune boosting supplements when you have CLL, because they claim to work by boosting lymphocyte production!

Hesperidin is derived from citrus peel and might be useful for some blood cancers, but apparently not CLL that I could find."

I am not medically trained either, so this is coming from experience with my own health and from the sharing and researching on this site over the years. I hope you can take the suggestions that Neil has given you to make the case to his Dr.

It has been 5 days since you posted. I do hope there are signs for immune system being stronger.