Hi there. I was diagnosed with AITL in early October last year. I was so sick when I got my diagnosis, so sick that I started my chemo the next day. Had 6 rounds of R CHOP and then 5 weeks later, an autologous stem cell transplant. I am in remission and feeling great. Lost all my hair twice, and it is now coming back curly.

The treatment is not easy, but oh my goodness, it saves lives!
I have gone back to work.
My only problem is that it seems to have kicked off an autoimmune problem in that my immune system is killing off my platelets and neutrophils. Thrombocytopenia and neutropenia. My platelets are slowly getting better and are now averaging 50. My neutrophils are not so good so I inject with the GCSF stimulating filgrastim 2x a week, and a blood test 1x week. I haven’t had to have a platelet infusion in a long time. Had my stem cell transplant March 18 and was discharged from hospital 3.5 weeks later.

I had a hard time eating during my stem cell transplant so was encouraged to do tube feeding. I consented thinking that anything that would speed up the healing—cool. Getting the tube inserted was absolutely no big deal. There were some procedures that were pretty tough, but if you think … well this is just going to be bad for 1 min, 2 mins and then it ends, well, you’ll find your way through it.

I am now walking 4-5 kms a day and swimming 1200 metres. It was a slow build back. I started back with 5 mins of yoga a day. And slowly added more time.
Sam Neill the actor has the same blood cancer and has been in remission and is back acting.

Take a day at a time. You only need to worry about today, do not cross bridges until you come to them, you don’t need to know every variant of this disease and all the things that can go wrong. Mostly it goes just fine. Trust your team, tell them everything.

I think it is one of the good ones to get. In my opinion. The prognosis looks terrible, but the stats are done over 20 years. AND there has been huge improvements in the last 5. Don’t look at the stats, and stay away from google.

My advice for getting through…
Unsubscribe from anything political or sad in social media. You’ll need yr mind just focusing on good things. I now have a love for the baby elephants, orangutans, cats, dogs, and people that do cool adventures - cycling from Finland to Singapore, for example … thats how I entertained myself. No movies or tv shows with tension or suspense. Take your mental health seriously. Walk as much as you can. Be strict about who visits - making sure they are all well. Keep away from crowds, mask up. I still do this.
Liz
In New Zealand