Latest consultation

[kitchengardener2]

Good morning, Dr Munro called yesterday after my blood tests. White cells 208 and Heamaglobin 96.

Not as good as I would have liked but no real problems and I am in good health. Heamaglobin down so more anemia and white cells up. She wants to see me face to face in eight weeks with a view to starting treatment.

I told her about my lymph nodes reducing after my Covid19 vaccine. She was surprised that the lymph nodes had reduced, not heard of that happening before, I would have to be different wouldn't I!!

Have a good day xxx 😘🤗

[Hidden]

When you are told that treatment is imminent you go through all the emotions you may have felt at time of diagnosis.

HGB is below 10 and if it stays that way, it’s time.

But treatment means a new lease of life. So treatment is good even though there is sometimes the occasional blip.

Best wishes, don’t worry.

[kitchengardener2 in reply to Hidden]

Oh thank you for that, your words have settled me somewhat.

[GMa27]

So true about treatment as devonrr wrote. It actually can be a positive next step. I felt fine on W&W but my neck nodes the year before treatment were getting larger & causing pain when turning my head. Driving became difficult. As soon as I started treatment, they were gone. Do you have an idea of what type of treatment?

I am in remission now and it's kinda like W&W.

💕

[kitchengardener2 in reply to GMa27]

Yes probably Acalabrutinib. Sounds good if I have to have anything.

[neurodervish]

I didn't see Dr. Munro listed anywhere as a CLL specialist, so I wonder if you have had a FISH test (fluorescence in situ hybridization) and an IgVH mutational status test? These 2 tests are intrinsic to the decision-making process for treatment.

Also, I noticed that you listed your WBC, but not the individual WBC breakdown showing the more essential number of your lymphocytes. Can you find out what your absolute lymphocytes count (ALC#) is?

[kitchengardener2 in reply to neurodervish]

Dr Munro is a consultant heamatologist. She has looked after me since I was diagnosed. Although probably not a CLL specialist, I have absolute faith in her.She did do an additional test to see if I was suitable for Acalabrutinib a while ago and she was happy with the result.

She always gives me white count and Heamaglobin but not ALC. Maybe I could ask her nurse but I don't like to make a fuss.

[LeoPa]

If your nodes shrank your ALC could be up due to that.

[kitchengardener2 in reply to LeoPa]

Is that good or bad. Dr didn't seem concerned.

[LeoPa in reply to kitchengardener2]

I guess it's good. BTK inhibitors have this effect. It's a desired one.