B Cell cll

[Cllquerist]

Hello,

My father is 73 years old and was recently diagnosed with b cell chronic lymphocytic leukemia. He hasn't shown any visible symptoms except for a swollen lymph node under his chin and his haemoglobin count, which has been fluctuating between 10 - 11 in the last few months. He is otherwise very active, follows a strict diet and hasn't had fever or lost weight. In fact, he has gained a couple of pounds. But the doctor says he needs treatment because of his haemoglobin count. My question is, is it really necessary for him to go through chemotherapy, given that it may completely disrupt his current lifestyle and confine him to bed. Can he live for a few more years without much suffering if he doesn't opt for treatment? Because that is what he really wants. Please, is there anyone who can answer my question?

Thanks.

[2003UK Champion]

Hi, I am not a medical person and treatment options are so unique to the complex, individual person. However Leukaemia Care Charity are there for you.

For support and advice:

Email: [e-mail]

Freephone helpline: 08088 010 444

Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm

I have found one of the most important things is for families to keep talking, where possible, and realising that ultimately it will be your fathers decision. I have also found writing down all my and perhaps his fears, thoughts, feelings and questions before medical appointments because I forget them as soon as I get in to my appointment and then writing down the replies.

Also please look after yourselves, my fears, what if's, thoughts and emotions were all over the place at your stage, you have all had potentially life changing news and will be in shock and treat yourselves.

[Jm954]

Hi there,

I'm not sure where you are based (country) but treatment should be your father's decision in discussion with his doctor and no one can make him have treatment.

Having said that, treatment for older patients is unlikely to confine him to be but a very low haemoglobin might do so because he will be too tired to move. When to start treatment is a difficult decision because it's important that patients are well before they start because they cope and tolerate the treatment better.

Here is the international guideline for starting treatment that his doctor should be following. bloodjournal.org/content/13...

Has his doctor said which treatment he is proposing?

Jackie

[Smakwater]

Based on limited data here, In my opinion I would first inquire if the hemoglobin condition can be treated temporarily. And unless you are seeing one of the leading CLL specialists, this decision warrants the consideration for discussing the following with another cll specialist:

1. Your genetic profile, i.e. risk/prognostic markers, characteristics from FISH/Flow cytometry.

2. Current Health status considering age, commorbidities, Rai stage, and current impact of disease on quality of life.

3. Treatment options including clinical trials, with consideration given to differing therapy objectives.

It is difficult to offer any credible information without prognostic data from a lab report other than small bits of the CBC.

If this is not life threatening, look for a specialist.

JM

[DrunkJam_UK Administrator]

Not a doctor, and, really, no one knows without all the data available on your father's specific case.

I know that CLL (B cell) can potter on without treatment for years BUT, and this is where we are, things can change overnight. My husband went into "catastrophic collapse" while on watch and wait, due to his platelet count tanking completely. No one could have foreseen this based on his blood work. The range of options for him changed immediately. Then, over this next few weeks, things changed again, and again and again.

He can always refuse treatment, but, it is also important to understand what the treatment is, what it does, why it specifically is being proposed, and what the risks are without it.

[Meeawwww]

Thank you

[Cllquerist]

Thank you all for your replies!