CAR-T day 20

Thinking of you Lyn, glad you like the replacement drinks!

hugs xxx

Thanks for dropping in past Lyn. It all sounds like walking through treacle but you are slowly get there.

Lets look for that light to get brighter soon.

((hugs))

Thinking of you Lynn. Hope you feel better soon 

Alice x

Lovely to hear from Lyn. Apologies for the tardy response. Been juggling too much. Now sitting in the car pretending to watch our youngest play football, while frantically catching up on my social life:-).

My husband has had a lot of downs since his IVE bridging chemo. Severe side effects including really bad mouth ulcer (he said that it was like having a mouth full of razor blades), loss of appetite and neutropenic sepsis. He was in isolation at the local hospital for 10 days. He'd lost so much weight, the CAR-T team at UCLH decided to wait for him to bulk up a bit - guess what they recommended? macdonald's milkshakes:-). That's my husband's worst nightmare!! He did try a few but gave up. 

His day 0 was due to be last week, but, his liver was bad (bilirubin count was 118). An ultrasound revealed that a tube connecting the liver to other organs was clogged with cancer cells. 3 days of steroids did no good and so he had a stent put in. That caused trauma to his pancreas causing pancreatitis (extreme abdominal pain every time he tried to eat anything). He's on oramorph etc to cope with the pain. The medical team decided yesterday to start the car-t journey as bilirubin was down to 48 (although not the ideal 40 they were hoping for). So, he started his conditioning chemo FLU/CY yesterday; CAR-T clinic next Thursday if everything goes well between now and then. 

I was hoping to visit him today (he's in T13) but as he's had a temperature for 2 days, he's been advised to avoid visitors. I'm going to be there Wednesday for sure and may be tomorrow. Might pop in for a catchup!!

xx 

((hugs)) Sue, just ((hugs))

Big hugs to you both Sue, hope you’re able to pass them on to him very soon 

xxx