CAR-T day 35

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Hi all

I’ve been out of hospital for a week now. Stayed in for the full 28 days, so didn’t have to go to my brothers home who lives near the hospital. Shame really as I was looking forward to bossing him around, getting him to adjust my pillows, make me sandwiches and cups of coffee.

I got away with the treatment very lightly, because I had minimal side effects. Apart from C.DIF. Feels good to be home with my husband and cats. Nice to have a home cooked meal. The hospital food was ok but very monotonous.

Have to go back every week for blood tests and to see the consultant. Got told off last time as I didn’t tell them I have a cold. But I didn’t have a temperature with it!

Hope you are all well.

Lyn x

Lolla over 4 years ago in reply to FormerMember

Hi Sue, sorry to hear Paul is not doing to well , please don’t be sorry for being silent for a while you’re had far more important things to deal with. Try to keep positive & my thought are with you & your family.

love & hugs Lyn x

FormerMember over 4 years ago in reply to Lolla

Hi everyone,

My husband passed away on the 4th as the neurotoxicity was irreversible. I'm beyond devastated as he was my best friend and soulmate. Our boys and I are lost without but I know that time and all the memories we've made together will help us cope with his loss.

moomy over 4 years ago in reply to FormerMember

Oh Sue,

I am so very sorry, you must all be devastated. Thinking of you all and hoping those memories will help you through these dark times.

sending condolences, love and hugs xxxx

Moomy

Thehighlander over 4 years ago in reply to FormerMember

Oh Sue, I am so so sorry to hear this....... I have no words that can make this any better...... all I can do is send warm and caring ((hugs))

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

johnr over 4 years ago in reply to FormerMember

Oh Sue, so sorry that you have had to post this news, hang on to those memories they will help as does talking,

thoughts and prayers to you the boys and family and friends.

John

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

Paul1969 over 4 years ago in reply to johnr

So Sorry to hear your news Sue.. my thoughts are with you all.

Paul

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Lolla over 4 years ago in reply to FormerMember

So sorry to hear about your husband, my thoughts are with you and your family at this difficult time. Also apologies for the lateness in answering, but I’m in UCLH at the moment with fungal pneumonia and have been very unwell but on the mend now. Love to you and your family,

Lyn x

Alice123 over 4 years ago in reply to FormerMember

I'm.so sorry and sad to hear this. Will be thinking of you and your family.

Alice x

FormerMember over 4 years ago in reply to Lolla

hi hope you are feeling a bit better i was just reading your post saying you have been quite bad my other half is in ucl at the mo he is in icu and has a bad chest infection he has been struggling so thay have had to intubate him did this happen to you im sorry to ask but im very worried about him and dont know what to except thanks cheryl xx

FormerMember over 4 years ago in reply to FormerMember

Hi Cheryls77,

To clarify, it was my husband who was receiving CAR-T. He passed away due to irreversible neurotoxicity earlier this month.

He didn't need to be intubated as he was able to breathe on his own in ICU after a couple of days.

I hope everything goes well with your husband's treatment.

Good luck.

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