Ibritinib

[littledab]

Hi. Dr says Hemoglobin is low and I will have to start this pill is anybody on this pill does anybody know about it

Please let me know. Thankd

[carol_h]

Hi Deb, it’s me, carol. I’ve been taking imbruvica since July 28th. It’s a good medicine, better than chemo, and it works. I take it at 9 every night and feel fine, no worries you’ll do well with it. 🙏😊

[littledab in reply to carol_h]

Thanks carol is there a reason why you take it at nine at night

[HAIRBEAR_UK Administrator in reply to littledab]

I take mine when I awake with a pint of water, first thing I reach out for. Half hour later have a light breakfast and the rest of my meds. Had a few tummy aches and was loose for a while (a few weeks), but that all seems OK now 4 months in, some prefer to take their tablet before bed to avoid any potential tummy issues.

[MaggieSylvie]

At my MDS support group last Friday, one or two people mentioned a new drug Roxadustrat. It also might be good to ask about as it's taken to increase haemoglobin cells.

[HAIRBEAR_UK Administrator in reply to MaggieSylvie]

Hi I have not heard of Roxadustrat for CLL?

CLL development can result in anaemia as red blood cells are crowded out in the bone marrow by proliferating and accumulating lymphocytes.

CLL treatment with a drug like ibrutinib helps make room for healthy cell production again. it is important that the doctor rules out autoimmune conditions that can cause anaemia such as (AHIA), that will have been done following bone marrow results.

[MaggieSylvie in reply to HAIRBEAR_UK]

We haven't all got CLL. In my case the haemoglobin doesn't need to be crowded out because it is already producing too few mature cells, and the platelets are proliferating but I don't think it's enough to make a difference. Just mentioned the drug because someone at my support group mentioned it. I haven't seen my consultant yet, so will mention it - it might help some of her other patients, if not me.

[HAIRBEAR_UK Administrator in reply to MaggieSylvie]

Hi MaggieSylvie thank for letting us know about Roxadustrat and MDS, good to learn about it.

Littledab let us know she has CLL in earlier discussion posts, that is why I explained how anaemia in CLL can be caused before treatment and how CLL treatment tackles this.

It is great we can all share experience here to help each other cope. We are a mixed group of people with different blood cancers and different treatments, but we share many similar challenges and can support each other.

[MaggieSylvie in reply to HAIRBEAR_UK]

Sorry Hairbear, I thought you were replying to me and putting me right.

[2003UK Champion]

Hi, I cannot help, but I thought would just say to take care and thinking of you and we are all here to support you.

[littledab in reply to 2003UK]

Thanks 😊

I have to go with the flow is what it is

Talk soon

Thanks

❤️

[HAIRBEAR_UK Administrator]

Hi littledab sorry to read that you are having to start treatment. But good that after all your uncomfortable testing, increasing syptoms and disease burden you have a treatment that can help quite quickly. I started on ibrutinib treatment for CLL four months back, with low HGB, Seems to have done the trick am no longer experiencing anaemia symptoms, Amazing to feel lymph nodes just melt away after starting as the treatment flushes lymphocytes out of their hiding places into the blood. Don't be alarmed Lymphocyte counts go up in the beginning by quite a bit but soon die off.

There are a great many on the treatment, I am sure others will share their experience. Remember to keep well hidrated and remain vigilante against infection and check with your doctor what precautions to take. What other tablets have you been prescribed with the new ibrutinib treatment?

Nick

[littledab in reply to HAIRBEAR_UK]

Thx Nick

How do you feel. Talking it? Do you take it at night time? All new to me.. hgb is 8.5 wbc 240,000

[HAIRBEAR_UK Administrator in reply to littledab]

Hi littledab I take mine when I awake with a pint of water, first thing I reach out for. Half hour later have a light breakfast and the rest of my meds. Had a few tummy aches and was loose for a while (a few weeks), but that all seems OK now 4 months in, some prefer to take their tablet before bed to avoid any potential tummy issues.

[littledab in reply to HAIRBEAR_UK]

Thank you

Yes i will take at night 3 pills

And She prescribed two other pills like an anti-fungus and something else I have to take to do with it

So they Should be sending it tomorrow FedEx

[littledab]

Thank you

Yes i will take at night 3 pills

And She prescribed two other pills like an anti-fungus and something else I have to take to do with it

So they Should be sending it tomorrow FedEx