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Hi guys

I've completed a round of RICE and Matrix I'm still in hospital as I picked up a fever on day I was due to be discharged. The car was packed and about to leave room when I got up I basically collapsed fortunately not on the floor. They kept me in on antibiotics but not spiked a temperature since that day. I feel.like I've been through a lot in few short weeks I was wondered how other have coped mentally getting through?

My family are great I have lot of support and either.my Hubbie or mum stay with me in hospital. I feel like I've hit a bit of a wall and see myself feeling I'm missing out whilst here and others lives go on. The treatment been tough probably bit more than expected. Can't believe how much I have to drink to flush out kidneys.

The staff at Marsden are the most caring I've met and I'm so grateful for this.

I will have a pet scan soon

Thanks

Alice x

Alice123 over 5 years ago in reply to Lolla

Hi Lyn

Thank you that's really helpful. I'm really glad your doing well. What is C diff sorry not heard of that? I should be doing the extraction of t cells next week at kings followed by radiotherapy starting next day at Marsden.

All the best

Alice x

Lolla over 5 years ago in reply to Alice123

Hi Alice,

Lets just say it’s a jolly good thing each room has its own loo where C. Diff is concerned. It’s caused through the antibiotic they gave me stripping the good bacteria from the gut. The strange thing is that to treat it you need another antibiotic.

I found the extraction of T cells fascinating, it takes quite a while so remember to take a good book with you.

good luck for next week Lyn x

Alice123 over 5 years ago in reply to Lolla

Thank you Lyn

Yes they said extraction be all day. Did it make you feel tired the actual extraction? Il take a book or something. Kymriah cart t been approved so all systems go

Alice x

Alice123 over 5 years ago in reply to Lolla

Thank you Lyn

Yes they said extraction be all day. Did it make you feel tired the actual extraction? Il take a book or something. Kymriah cart t been approved so all systems go

Alice x

Lolla over 5 years ago in reply to Alice123

Hi Alice,

Kymriah is the same CAR-T I had & no it didn’t make me feel tired. Might be an idea to take some crossword puzzles & sudoku type games with you as well.

Lyn x

Alice123 over 5 years ago in reply to Lolla

Thanks Lyn x

Alice x

johnr over 5 years ago in reply to Alice123

Hi Lyn and Alice, just wanted I just wanted to share some good news from another site, a DLBC patient who had an auto then an allo transplant went on to have CAR treatment as it was then in 2014 with donor cells being used because their own were not suitable due to prior treatment, they have posted this weekend and are 5 years clear. The other person I refer to is now 9 months post treatment and getting used to not having to have regular tests, so they are starting to enjoy life now the hospital cycle is much reduced.

Hope this gives you both a lift on a sunny autumn day

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

Alice123 over 5 years ago in reply to johnr

Thank you John for sharing with us. That's really good news to hear.

Alice x

Alice123 over 5 years ago in reply to johnr

Thank you John for sharing with us. That's really good news to hear.

Alice x

Alice123 over 5 years ago in reply to Alice123

I hope your doing well. I'm just halfway through my radiotherapy and my consultant seemed really pleased with my progress. It's going okay quite tiring as we're travelling over 2 hours every day minus the weekend if we're lucky and don't get stuck on motorway. I'm still waiting on dates for Cart T to begin it's looking like beginning of December

Take care

Alice x

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