Thank you

[welshlady52]

Thank you for all your comments...ive got so many things wrong with me apart from CLL. Ive got spinal stenosis, chiari malformation, heart failure, its just one thing after another. I'm 63. Just really hoping I won't need chemo if this iron infusion works. Thank you all x

[lankisterguy Volunteer]

Hi welshlady52,

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Both of my doctors ( GP & hematologist) admit that diagnosing and treating fatigue & anemia are complicated, so we hope the iron infusions correct both. But treating your CLL will likely be delayed until other symptoms appear. See this pinned post of USA doctors explaining when treatment is indicated:

healthunlocked.com/cllsuppo...

patientpower.info/cll-answe...

powerfulpatients.org/2020/0...

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Treatment for CLL with "old school" chemotherapy is rare even in the UK, where until a few years ago it was the first choice for most patients.

Today there are many clinical trial results that show the modern targeted treatments like acalabrutinib / Calquence or the combination of rituximab / Rituxan (or obinutuzumab / Gazyva) and venetoclax / Venclexta gives better results.

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Len

[welshlady52 in reply to lankisterguy]

Thank you so much Len

[Skyshark]

With a heart condition you will not be given BTKi drugs, a common side effect is AFib. Therapy would start with BCL2 Venetoclax + monoclonal antibody Obinutuzumab for 12 four week cycles.

[MrMidnight in reply to Skyshark]

I had five stents placed in three blocked arteries in 2015 and started Zanubrutinib in 2016 on a clinical trial, which worked well for nearly five years.

The haematologist said that while Ibrutinib would not be a good choice for me, Z created far fewer problems for anyone with heart disease. The fact I was accepted onto a Z trial with existing heart disease means it must be acceptable given drug companies usually exclude anyone who might present problems.

[welshlady52 in reply to MrMidnight]

Thank you so much

[welshlady52 in reply to Skyshark]

He knows about heart failure but mentioned tablets?

[DUKELAXDAD]

Perhaps you will be given a BTK inhibitor. This is not chemotherapy, but it is a Targeted therapy. I have been on W&W for 5+ years. I will likely start Zanabrutinib next Thursday. I still feel fine, perhaps a little tired, but otherwise ok. But my numbers say otherwise. I am 71 and have a whole litany of other aches, pains and problems. But I still try to get out and walk at least 2 miles twice a day. I think for me that has made all the difference.

Best of luck!!

[welshlady52 in reply to DUKELAXDAD]

Thank you so much...I wish I could walk but I have limited mobility

[Phil4-13 in reply to DUKELAXDAD]

DUKELAXDAD, let us know if you do start and is it on zanubrutunib. I'm 74, W&W 4 years, feeling well, but WBC numbers creeping up.🙂 Sandra

[DUKELAXDAD in reply to Phil4-13]

I will be glad to keep you informed.

My WBC was 229.5 in May. But I still feel ok. I just walked 2 miles around my neighborhood.

[Phil4-13 in reply to DUKELAXDAD]

DUKELAXDAD, Fantastic! My oncologist told me he had a patient with WBC over 300 and was doing well with no treatment. I sure liked hearing that!🙂Sandra