Advice on my mum

[Canterburybells]

My mother is 93 , lives alone and is in lockdown but had a recent blood test . Her CLL is progressing and her haemaglobin and platelets are now significantly below the safe levels . She has no treatment but has all the stageC signs and I’m not sure what to ask her GP to do or offer...

[Phil4-13]

🙏 for you and your mom. Sandra

[cajunjeff]

I do not know all the formalities for getting referred from GP to a specialist within the NHS, but I would be asking my GP to get me into see a specialist in Cll sooner rather than later.

93 is just a number and doesn’t say much about your mum’s chronological age. She still has treatment options, one as simple as a pill a day if ibrutinib or venetoclax could be approved for her.

[mrsjsmith]

Agree with Jeff,

She needs to be seen by a consultant. This is something her GP can deal with and should have been. Where are the bloods being done ? I am surprised they haven’t been flagged up for a second opinion.

If you say the area your mother lives in someone will be able to make some suggestions.

Do you have medical power of attorney for your mother to discuss her with her GP.

Currently Acalabrutinib is, I believe still being given on compassionate grounds.

Good luck

Colette

[Canterburybells]

The haematologist who saw her 18 months ago was dismissive to the point of rude . When I asked about tests to give more detail on progression he replied that there was little point and it would cost the NHS a lot of money . I was unimpressed. Her new GP seems more involved and has said she will make a referral to the palliative care team .

[cajunjeff in reply to Canterburybells]

What is not clear from the discussion is how is the health of your mom overall?

My great aunt made to 105 and at 95 was in great health. Had she had cll I would hope they would have treated it as she had many years.

When my mom turned 90, we moved toward palliative care because her overall health was poor and putting her through treatments was not improving her quality of life.

Cll can be treated with chemo or with some newer oral drugs. I think chemo would be tough on most any 90 yr old plus person and can see why a doctor thinks palliative care would be better, depending on how one defines palliative care and depending on whetehr chemo is her only option.

If palliative care means do not treat the cll and make her comfortable instead, again that depends on her overall health. A drug like ibrutinib could not only make her better, but make her feel better too, so does that make it palliative?

All I can offer is what I would do if it were my elderly mom with advancing cll. If her health otherwise was very poor, I would move towards hospice and palliative care, as we did with my mon until she passed. We have no regrets, it was the right call, and she helped us make it.

If my mom was a very healthy 93 yrs old, I would want her to treat her cll if she had it. My great aunt actually had very good quality of life into her hundreds.

[Canterburybells]

Mum is mentally very alert , painfully thin having lost a lot of weight in the last six months . She has cardiac problems and would not be resilient enough for aggressive treatment now.

[cajunjeff in reply to Canterburybells]

That's impt info. I am on a drug called ibrutinib which is an oral pill a day for me and I would not call it aggressive treatment. Some have problems with side effects, many have little problems at all.

Its an expensive drug and it might be in the UK she doesn't qualify for it. If the only treatment your mom could have for her cll where you live is chemo based, like fcr, I would think doctors would all agree that treatment is too rough for her, just keep her comfortable.

If she has access to a drug like ibrutinib and is not in her end of days, you could ask her doctor.

But I cant disagree with palliative care for a parent at the right time. We did palliative care for my mom and dad before they died. Focusing on their comfort over trying to get them well was the right call for us, no doubts at all. Good luck to you, you are obviously a good son to be worried about all this and I am sure your mom appreciates that.