Am Iwell?

[Dawson21]

I have my bi-monthly consultant review next week, which always starts with the question, well how are you? My usual reaction, is that perhaps you should tell me! I have just got the results (After 1 hour) of my latest blood test but I'm not sure which questions to ask.

I started treatment with 6xRituximab and am 17 months into a 24 venetoclax programme, with Acyclovir and co-trixmoxazole as side dishes. I am also self-injecting G-CSF weekly. Any observations on my results and guidance on questions to ask, welcome.

Many criteria within normal range, but these stand out as being outside the normal ranges or only just inside. Current/high/low/trend over an 18 month period.

Haemoglobin 136/136/84/stable

WCC 3.4/66/2.2/stable

Platelets 183/204/130/stable

RBC 3.7/3.8/2.1/stable

HCT 0.39/0.39/0.1/stable

MCV 105/110/98/stable

MCH 38/38/32/slight increase

Neutrophils 1.6/15.5/0.6/slight increase

Lymphocytes 1.1/60/0.5/stable

Eosinophils 0/0.5/0/stable

Basophils 0/0.4/0/stable

The consultant generally explains things as being the effects of Ventoclax in particular. I do wonder if I should increase the dose of G-CSF. In general I feel good with no obvious CLL symptoms.

[lankisterguy Volunteer]

Hello Dawson21,

I am surprised that your consultant hasn't changed the query to "How do your feel".

The treatment and staging for CLL are not solely based on blood tests.

So what my doctor wants to know about are sensations like fatigue, gastro issues, joint aches and pains. swollen nodes, skin rash, etc. That information is important for your consultant to consider along with your blood tests to use a process called "differential diagnosis"

en.wikipedia.org/wiki/Diffe...

Len

[Dawson21 in reply to lankisterguy]

I do him a disservice - I volunteer this sort of information and he digests it

[RogerPinner]

Dawson, it seems to me you get on pretty well with your doctor, and I don't think you would be low to tell him if you weren't feeling good.

I have monthly telephone consultations which usually start with me asking him how he is (we have a longish relationship)!

As for the neutrophil/GCSF question I would suggest it rather depends on when you inject and test. If the blood test is 5 or 6 days after the injection and it neuts are still 1.6, then probably once a week is enough. If only 3/4 days after, maybe ask your doctor what he thinks.

Roger

[Dawson21]

Thanks - GCSF usually 6 days prior to test - I did the test next day on one occassion and the reading was 15. Yes good relationship - I was just wondering if there were questions in my current results that I ought to be asking, like why are some tests coming back zero.

[AussieNeil Partner Administrator in reply to Dawson21]

Don't worry about eosinophil and basophil counts of zero. If you check the reference limits, you'll see that both are from zero up, that is, it's normal to sometimes have zero results. Your blood test report should indicate out of range results with a H or L for high or low respectively, or in some other manner.

Neil

[Dawson21 in reply to AussieNeil]

On closer examination normal ranges arr indeed shown. Readings were 0.5 and 0.1 respectively before I started treatment. No worries then. Thanks

[Fran57]

Hello.

I don’t know if this is useful, but my husband had Rituximab x 6 and is about 15 months into 2 years of Venetoclax, so pretty similar to you, in that respect.

We’ve just moved to a completely different part of the country and we’ve just seen his new consultant very recently.

His results were:

Hb 138

WBC 3.7

Neutrophils 1.7

Platelets 179

Lymphocytes 0.9

So, it looks like they are very similar to yours.

He also feels pretty fit and well. He is 65 and also has had radiotherapy for prostate cancer and has a 3-monthly hormone injection for that (that’s all gone well, apart from rubbish side effects).

He was having GCSF injections a while back, when his neutrophils went below 1, but once they got to 1.7 they were stopped.

The only thing that has changed is that the new consultant has said to stop Aciclovir ( he was taking these for a long time, because he had a nasty bout of shingles a few years ago) because she said the dose he was taking was very low… too low to prevent shingles and she would rather he just kept some at home, IN CASE he got symptoms, in which case he should take a high dose.

I hope I’ve not bored you, 😉but it’s always good to hear of similar results / situations.

Stay safe,

Fran 😊

[Dawson21 in reply to Fran57]

Not at all. Good to hear. I might ask about cutting out acyclovir too.