Day +5 Post CAR-T Infusion

[DebinOzinLondon]

Thanks for all the lovely messages - apologies if I haven’t got around to responding yet but please know I’ve read them and am grateful. I’ve been focusing on updating my blog so there is a record of the process I’m on. I came home from hospital yesterday on day 4 (Friday) and my infusion was on Tuesday - I feel completely normal and much better than when I had chemo last week to prepare me to receive my reengineered T-cells. Back for day 7 check up on Monday but I did a 5km walk yesterday and followed it up with a 7km one today - pushed it a bit too much because of how well I was feeling and am now having a little lie down! The dangerous point for me on this new form of CAR-T trial is around the day 11 mark. Hopefully it will pass without incident but I’m just so relieved to be feeling well (I feared I might have been in ICU at this point). This is a photo of me with Dr Thomas Lew before I left the ward yesterday. I’m blogging to keep a central place for friends, family and CLLers who want to follow this at abtandme.com.

Best wishes to all

Deb

[Jm954 Administrator]

Good wishes for a smooth journey through this process Deb. Fingers crossed for a cure for you.

Jackie

[HopeME]

Deb: You look wonderful! Thank you for all you do for so many by documenting your journey and providing hope. I’m earlier on than you but I recall the mixed feelings I felt when my doctor at Dana Farber told me they were starting a Car-T program. I felt relief knowing the program was there for me should I need it but apprehension knowing that he was telling me about the program because some day I might need it. A little bit of that apprehension melted away this morning after seeing you looking so well. I pray the next week is uneventful and you charge right through day 11 and into the Australian spring and a new beginning.

Best,

Mark

[stewie]

Hi Deb

Yes fingers crossed all goes well , I often wondered how things were going

Take care

Strewie

[Ghounds]

You look incredible! Praying you will continue to feel well and for a successful outcome.

[sweatbee]

Deb,

Praying your Car-T road is smooth and gives complete healing.

Blessings,

Hal

[Justasheet1]

Hey Deb,

As others have already said, you look incredible. You are a trailblazer unfortunately. First it was with Venetoclax and now it’s Car-T.

I’ll say a prayer for continued success for you. 🙏🏻

Jeff

[elkk]

Deb,

All the best for a continued uneventful process, as others have said you look amazing, happy that you feel that way too!

Thinking of you

Elkk au

[Floxxy]

Lovely to have an update and so glad all going well so far. X

[Cllsller]

Best wishes and thank you for posting.🙏🏻🤞🏼

[nvp815]

You are quite amazing Deb. Hope all continues to go well for you. Stay strong and fingers crossed that day 11 uneventful.

Hugs,

Nan

[Smakwater]

I am moved and joyfully encouraged Deb,

May your well being be swift and lengthy.

You are a Mighty Oak in the patient advocate forest.

JM

[Mystic75]

Hugs and warm wishes for a successful and uneventful recovery!

Thank you so much for sharing you experiences - it is such a gift.

💖💖💖

[Big_Dee]

Hello DebinOzinLondon

Blessings going forward, keep up the good work.

[SeymourB]

DebinOzinLondon -

Such a friendly, readable blog!

[prbild]

Deb,

Best wishes in your CAR T journey. I am 1 year post CAR T with no sign of disease. I hope your results are as good.

Paul

[Debinoz in reply to prbild]

Wonderful Paul - this gives me hope.

[mkawass in reply to prbild]

Great Paul. Can you PM me details on your CART ?? where did you do it? how much it cost? how did you feeling during and after?? i would be grateful

[Debinoz]

Funny that I said the dangerous point was day 11 as that was exactly when I was readmitted to hospital with Cytokine Release Syndrome and spent 5 days back in - more time than my initial admission for the infusion! Back home now and feeling better - still blogging the experience as I’m sure lots of you will be interested in this treatment down the track. Will know for sure if it’s worked in as little as 10 days. Now day +19. abtandme.com

[Justasheet1]

Deb,

I just read your blog and OMG what an awful time you’ve had.

I’m glad that you’re feeling better and will say a prayer for you for your bone marrow biopsy that you are umrd!

Jeff