Venetoclax started

[aloneifly]

Further to my recent post.

I am pleased to say I am now home after my three days at RMH

The team expected me to have TLS due to the size of my lymph nodes. They pumped me full of fluids and I had an infusion of rasburicase a few hours before Venetoclax.

Thankfully my bloods showed no sign of TLS and so one day after starting V I was discharged

Got to do the same all over again of course but it was almost a pleasurable stay. I was looked after so well at RMH .

The staff are very friendly and ready to help at the press of the call button

Got to go all the way there again on Sunday for a Covid swab which is a nuisance.

Feeling fine with it all at the moment

[Hidden]

Congrats! Glad the first go didn't result in TLS!

I was inpatient for initial and first dose increase. I get so antsy in the hospital. Good you felt comfy.

[MrMidnight]

I will be starting Venetoclax later this year after nearly five years on Zanubrutinib. My lymphocyte count is 14 and my lymph nodes are only slightly bigger, according to a CT scan I had a month ago.

Can you tell me how large your lymph nodes were roughly and how high your lymphocyte count was when you were started on Venetoclax? I'm trying to get a rough idea of what constitutes "large" lymph nodes. No worries if you don't have that info or prefer not to pass it on.

[aloneifly in reply to MrMidnight]

I would say they are larger than 5cm.

Anyone I meet now says your face is swollen and my GP described my axillary nodes as the size of half a tennis ball on each side.

When I had my face to face meeting with the consultant I was wearing a mask and she didn't need me to take it off to have one look at me and say time for treatment.

I had a scan but I am not privy to the details of the scan which no doubt have accurate sizes.

My lymphocyte count was about 150

I'm only a few days on on 20mg Venetoclax.

No difference in node size yet and if anything I'm finding more.

Personally due to phone calls instead of face to face appointments I think it's been left too long.

But that's the fault of Covid of course

[MrMidnight in reply to aloneifly]

Thanks for the info! When I was first treated in 2015 I looked like a chipmunk and my lymphocyte count was over 180 but the docs didn't seem to think having left treatment that long was a particular problem.

I also had a few new nodes pop up in my lungs after treatment began but everything settled down after that.

Her's hoping all goes well for you.