SCT Journey update No. 12

[LFCLove]

Hi all, I’m now + 168days post SCT.

Consultant clinic visit last Friday showed that white, red cell and Haemoglobin remain low & T-cell chimerism had fallen slightly from 65% to 52% so the plan is to contact the original donor to request further white cells for DLI’s to reduce the risk of disease relapse.

Obviously this carries a risk of GvHD but they plan to reduce this by small doses then gradually increasing at three-monthly intervals.

I was due to start my re-vaccination course shortly but this is now cancelled and will be restarted 6 weeks following the DLI’s.

The possibility of DLI’s was explained previously so it’s no surprise, just a bump in the road. It’s annoying as planning for anything becomes somewhat difficult.

A positive if GvHD occurs is that it shows an immune response and that donor cells can be fighting any remaining cancer cells! So every cloud……

Will be reviewed in a months time.

All the very best wishes.

Keep positive.

G

🤓

DLI (Donor lymphocyte infusion)

GvHD (Graft versus host disease)

[Luthorville]

Sorry about the bump in the road. I’m sure the recovery is not a straight line forward. How are you feeling otherwise?

[LFCLove in reply to Luthorville]

Hi, feeling ok thanks. Had a slight bug over the festivities but has now resolved. Still trying for daily walks to the beach and back but some days recently have made them a lot quicker🥶

[Luthorville in reply to LFCLove]

Great to hear. Good luck and best in your continued recovery

[Spanelmad]

Keep up the walking, the bracing sea air will do you good.The bump in this road will be in the rear view in know time!!

[hunter5582]

Sorry to hear about the glitch. You have a great and informed attitude about how to manage it. Wishing you great success moving forward.

[Ebot]

Great to hear your progress. Fingers crossed for a swift flattening of the bump! Wishing you all the very best for a smooth and uneventful onwards SCT journey.

[Purplechoclover]

Sorry to hear of the bump you've hit and wishing you all the best for your treatment plan and moving forward

[Gaithersburg]

Thanks for the update - all sounds very positive apart from the hiccup. Great that you're out for a walk daily as it does help so much mentally and physically. Hope the next stage of your journey goes well.

[Hatchie]

Thanks for the update. Stay positive, I've been told by my doctors that it would be rare/weird if there weren't any bumps on the way.

Keep up the walks to the beach. It's so hot here in Queensland, Australia I dream of going for a walk in the cold air.

Look after yourself, I look forward to the next update.

[clematis26]

Good to read your update! You are being well cared for - look forward to further posts!

Kind regards, Sue

[WIL2US]

Sounds like you have a great attitude. Enjoy your walks. Best wishes

[dnaleor]

Hi, one year ago tomorrow I had also lower Chimerism 70%. They stopped cyclosporine. I had no DLI, but a few days later GVHD, lower gut and liver rejection. In total had to stay 2 months in Isolation. After that all was better. I started to work part time this month. Keep your mind up and have confidence!

[Cja1956]

Thanks for the update. Sounds like things are progressing well. It sounds like they have your situation in control and that you’ll be feeling better soon. All the best.

Cindy