Ibrutinib / Venetoclax journey

[Oleboyredw-uk]

So, a quick update from me. Went for a checkup yesterday (Friday). Consultant pleased with status, Lymphocytes have reached the lofty heights of 1.1. The reading has moved around the 0.7-1.0 since start of treatment.

This was only a ‘normal’ checkup. Back in July for my checkup in the research dept. At that checkup they are going to test my antibody levels following my Shingles encounter in March. That teat will form part of decision of whether to stop or continue acyclovir.

That was about all worth reporting. However, at my first annual hypertension checkup at my new GP on Monday they turned up that I’d not had a Pneumococcal 13 for over five years, that there had been discussion between my CLL consultant and my old GP but no action had been taken. So, the nurse gave one of those.

The rest I think is boring. Another short update after July visit. As ever, ask any questions if you have any.

Best to all, rob

[MsLockYourPosts Passed Volunteer]

Everything I’ve seen says Prevnar 13 once only, but Pneumovax 23 five years after the first time, and if both were when you were under 65, a third one at least five years after the second .The last clarification I saw was unclear about whether you continue every five years after 65, and if you really get the vaccine every five years if you start much younger than 65. The clarifications seem to just muddy the water.

It sounds like you have joined the ranks of boring patients. Congratulations!

[PaulaS Volunteer]

Great news, Rob. Thanks for the update.

[Newdawn Administrator]

Fantastic news Rob with continuing great medical oversight.

Can I enquire how long you needed to remain on Venetoclax?

Newdawn

[Oleboyredw-uk in reply to Newdawn]

I started Venetoclax ramp-up on 10th April 2017 and took final Venetoclax on 9th June 2018.

Based on MRD status there was a discussion to stop about six weeks earlier, however a CTscan showed one lymph node over 15mm. Repeated scan during the May showed it had reduced from 17mm in March to 14mm in May.

I guess, short answer was 15 months including ramp-up.

rob

[Peggy4]

Great news.

Peggy 😀

[Mystic75]

Congrats, Rob! Who would have ever thought that 'boring' could be so exciting?!

[scarletnoir]

Sounds like very good news - keep on keeping on!