Surgery with CLL

[BSMI]

June 2018

I have CLL & recently needed surgery for a keratoacanthoma (a type of skin tumour) on my chest. I kept a diary of the events in case it happens again, but then thought I may as well post it here. So here goes …

69 YO male in Australia with CLL. Been on Ibrutinib for 9 months. It has been brilliant: in the first 2 weeks my WBC dropped from 59 to 19, & since then has reduced to an acceptable 11. Need Oxycodone & Lyrica keep to my general pain unde control. I suspect the tumour (& other infections near fingertips) might be side-effects of Ibrutinib, or at least immune system weakening?

Days from surgery –

Day -5. Met surgeon. Told him my haematologist said to stop Ibrutinib for 1 week before surgery & 3 days after, to prevent bleeding. He said no problem as he often operates on people on blood thinners. Stopped Ibrutinib – fingers crossed.

Days -4 to -2. OK-ish except for strong pain in chest related to tumour.

Day -1. Woke up with medium pain under arms where I had previous lymph problems pre-Ibrutinib. My haematologist rang (nice of her; also spoke to my GP last week; all 3 doctors are in contact so I can’t complain about my care).

Day 0. (6 days off Ibrutinib) There is definitely a small sore lump under my arm that wasn’t there last week. Off to hospital. Operation went OK I guess (I was asleep) but the surgeon rang my wife & said so. Was unexpectedly allowed to go home that night.

Day +1. Woke in pain at 3AM but was expecting that as the anaesthetic wore off. Lump under my arm is better if anything. The surgeon rang & said the tumour was deeper than he expected (hence the pain). I arranged to see him next week (day +9); he will have the pathology + I’ll be back on Ibrutinib by then.

If anyone is interested I’ll post again after that

[migirlusa]

Sounds like things are going as expected. Except for the size of the tumor. I hope everything is fine with the pathology. Yes please keep us informed.

Pam

[CLLCalifornia-USA]

Good news that everything went well for you. I would love for you to share the pathology report. Glad you’re back on Ibrutinib. It has been a good drug for me. Stay strong. Sally

[Senecio]

Surgery is always an extra risk for those of us with CLL. I hope things improve for you, and that the ibrutinib gives you good disease free progress when you restart it.

John

[MsLockYourPosts Passed Volunteer]

We never know when something reported here might apply to us. Please keep us updated!

[BSMI in reply to MsLockYourPosts]

Sorry, yes I should have posted a follow-up.

In summary I was off Imbrutinib for 6 days before tumour surgery & 2 days after.

On day #5 off Imbrutinib I started to re-develop a lump with pain under my left arm. This continued worsening but then by day #3 back on Imbrutinib the lump had started to reduce, & by day #5 it was completely gone.

Unfortunately as at a month post-surgery I still continue to have pain at the tumour site, so am having CT & PET scans this week & then seeing my haematologist to try to figure out why.

[MsLockYourPosts Passed Volunteer]

Hopefully it is just like necrotic (dead) tissue left over from the tumor!