CAR-T day 35

21 replies
13 subscribers
17914 views

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

Thehighlander over 5 years ago

Hi Lyn, great update and you are home - bliss

During these early days it is important to report every change as early intervention is a good rule.

Let’s look for for the next weeks to go in with good blood results and an improvement in all aspects of your wellbeing ((hugs))

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

johnr over 5 years ago

Hi Lyn, that sounds really positive and should bode well for the future especially re neurotoxicity and may reflect the changes and fine tuning of the treatment as they continue to learn about this type of treatment.

I am sure your brother is relieved for a number of reasons ;)

John

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

Lolla over 5 years ago

Hi again, just a quick update . Had a phone call from one of the doctors at the hospital my PET Scan shows no activity I’m in REMISSION. Let’s hope I stay there this time.

Lyn x

moomy over 5 years ago in reply to Lolla

Hi Lyn,

that’s TERRIFIC NEWS!!!!!
so thrilled for you!!!!!

hugs xxx

Moomy

Thehighlander over 5 years ago in reply to Lolla

Oh I am just in to your news Lyn - I am doing my happy dance - way to go....... I think this is a good reason for a Single Malt.

Big ((hugs))

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

johnr over 5 years ago in reply to Lolla

excellent news and long may it last!!!

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 Lolla

Hi Lyn

That is fantastic news am so happy for you

Alice x

FormerMember over 4 years ago in reply to Lolla

Hi Lyn, so so happy for you!!! I’m terribly sorry that I’ve been silent for ages. My husband has been back in UCLH icu for 3 weeks now with second episode of neurotoxicity.

He’s not doing good. Has lost cognitive skills, mobility, vision and has been on 24x7 121 care.

The consultants are flummoxed as to why they can’t recerse the neurotoxicity. We are preparing for the worst.

Thehighlander over 4 years ago in reply to FormerMember

((Hugs)) Sue and let’s look for his team to turn the corner on this xx

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

moomy over 4 years ago in reply to Thehighlander

Big hugs Sue, really hope his team find a way to help and get him through this

hugs xxx

Moomy

More from this forum

CAR-T day 35