What options for my sister

[SisterL]

My sister has CLL and is on Zanubrutunib. After surgery on her left hip she is now facing severe pain in right hip and cannot walk plus nausea and fatigue. Her appetite has gone and I am getting very worried about her. Is there anything we should be doing?

[cajunjeff]

Hello sisterL I am sorry to read about your sister. You are a good sister to be trying to help her. I am afraid with the very limited info you have provided, though, that any responses might not be helpful.

If your concern is that the zanubrutinib is causing her nausea, then that is something to address with her cll doctor. He can pause the drug, try another drug, prescribe nausea medicine, lower the dose, or try other strategies.

Most people tolerate zanubrutinib fairly well. If she was not nauseated before her hip surgery, then it could be pain meds if she is on them, nausea from her pain, or other things causing nausea.

I would hope she can stay on her cll med. If she is suffering from fatigue due to her cll, the zanubrutinib should eventually help that.

I think her doctors are going to be in the best position to determine the source of her nausea and fatigue. There are so many possible causes for fatigue and nausea like her cll, her cll meds, her hip surgery, her hip surgery meds, her state of mind and other causes that may contribute.

I wish I could be more help. I can say that, in the long run, if you can get her back up and at it from her surgery, that there is a very good chance the zanubrutinib will get her cll under control. Good luck.

[SisterL in reply to cajunjeff]

Thank you very much for your comments. I don’t know why the nausea and appetite decline and pain is so persistent and what is causing this but she is getting very frail. I will encourage her to get help and explore further with her doctor.

[AussieNeil Partner Administrator]

Hi SisterL and welcome to our community. You haven't shared where you live and that determines the treatment options available to your sister as do her CLL markers and several other factors. She may also be elegible for clinical trials, but that's probably out of the question now. Assuming her nausea and pain are due to the zanubrutinib, the first priority is to get the nausea under control. There are a number of anti nausea medications she can be prescribed. All work best if taken prior to the onset of nausea. If the nausea is at its worse at a particular time of the day, some find that adjusting when they take their zanubrutinib can help. (Zanubrutinib can either be prescribed to be taken twice daily, or once daily, with the latter option enabling a switch to prior to retiring for the night.) Of course this needs to be discussed with her prescribing specialist, but they should be willing to work with her, because side effects are a significant factor behind why some stop taking medication to control their CLL.

With respect to her hip pain, if that is thought to be due to the zanubrutinib, then there are other BTKi treatment options available. See healthunlocked.com/cllsuppo... If she has been prescribed zanubrutinib, then she should also have the choice of acalabrutinib or ibrutinib available to her. Ibrutinib is the first approved BTKi and acalabrutinib or zanubrutinib are generally much better tolerated, but unfortunately, no one knows which BTKi they can best tolerate. There are also fixed length combination treatments that could give your sister a remission for a number of years.

With respect to her fatigue, that can have a number of causes. It might be due to anaemia from her CLL (in which case it could improve as her CLL treatment gradually improves her blood counts), or might improve if she switches to another BTKi treatment option. Her GP/PCP doctor might be her best option to determine and eliminate the probable cause.

Finally, If your sister lives in the USA, then she can apply for one free video appointment with a recognised CLL specialist, via the CLL Society's Expert Access program, to discuss her treatment options. cllsociety.org/programs-and...

I hope the above helps your sister successfully investigate and find better options to improve her quality of life. There are so many treatment choices available nowadays, particularly in the USA, including around a dozen different BTKi drugs in clinical trials. See healthunlocked.com/cllsuppo...

Neil

[SisterL in reply to AussieNeil]

Thank you very much for these helpful comments. We live in London, UK. A genetic mutation was identified when she was in hospital last February for the surgery. So her diagnosis is fairly recent. I will pass on this information for further investigation.

[mrsjsmith]

Your sister is lucky to have you as her advocate.

Just a small extra piece of advice to add to the excellent information from Jeff and Neil. Hopefully your sister will have a CNS ( clinical nurse specialist ) and they are often easier to reach than a consultant and very helpful and knowledgeable so do email them with questions, especially in the middle of appointments.

Colette

[SisterL in reply to mrsjsmith]

Thank you so much. I have not heard my sister mention her CNS (just her Consultant) so will follow this up. The network is very helpful.

[mrsjsmith in reply to SisterL]

It’s brilliant and you are lucky to have found us.

It’s also useful if your sister can have someone with her at appointments. When I know it’s one discussing treatment I get one of my stepdaughters to come with me and they keep a note of what was talked about and mention any questions I have forgotten, which is very easy to do.

Colette

[DoriZett]

All good advice from folks.

Her oncology consultant should be able to address it if it is Zanabrutinib related.

I would just add, that if her right hip pain is due to also needing a hip replacement on that side - if she is in bone on bone pain - that could also make one nauseous, with no appetite.

That was the case for me when my left hip replacement was needed. I was young, had not had a fall, so no one expected I needed a hip replacement, and didn’t even do an x-ray for over a year. That degree of bone on bone pain was beyond any pain I’d ever experienced, certainly enough to make me lose my appetite.

Your sister is lucky to have you advocating for her. Blessings to you both. 💕

[SisterL in reply to DoriZett]

Thank you. The example from your experience makes sense in my sister’s pain which has been severe. I am summarising all the helpful comments for her. Best wishes.

[CycleWonder]

I am sorry your sister is dealing with pain and nausea. Getting over a hip replacement is usually relatively easy compared to having a total knee replacement. Many patients feel relief after a hip is replaced.

If she is not receiving PT, this may be beneficial to your sister. They can measure her leg length after her one hip replacement and give some exercises to ease her pain. She may need the other hip replaced as well. Older people can tolerate this surgery very well.

I support the advice of others to get help with her nausea. Not eating will weaken someone pretty quickly.

If it were me, I would attend doctor appointments with her if you can.

[SisterL in reply to CycleWonder]

Thank you so much for these helpful comments. It is so useful to hear about other folk's experience. I will pass on your comments to my sister. I am encouraging her to talk to her specialist nurse and, yes, attending appointments with her is a good idea.