Hi everyone
LouAus here. The latest news is that following my treatment, my Specialist recommended for me to undertake Maintnance treatment with lower doses of Rituximab which hopefully will delay the MCL for coming back for about 15 years. I initially thought that there was a 50% change of coming back within 5 years but the latest is that it is not a matter of if but a matter of when it comes back.
The treatment consist of a lower dose of Rituximab every two months for 24 months with bloods done a couple of days before every treatment. I started yesterday so it is a long way to go but so far so good.
I don't know how it works in the UK but here, Rituximab for Maintnance treatment is not subsidised by the Government so I commenced lobbying them to include this drug for this purpose into our PBS (Pharmaceutical Benefits Scheme) which hopefully will make it a bit less expensive. Either way I am going through with this as I do trust me Specialist with his recommendation. If I don't benefit from this during my treatment, I hope that this lobbying might help others in the future.
So to some other good news, my little bit of hair in my head grew back and I am very happy that my beard has grown a little bit too to my wife and mum's disapproval. I am also regaining my strengh which has allowed me to work in the garden which I missed. The other news is that when I return to work, it wasn't long untill they send me home due to the Corona Virus so I am now working from home. I know it is for my own safety but after being off work for 10 months and savouring freedom and am back in the coop like a chicken. Any way, that is for now, hope you guys are looking after yourselves. Stay safe!
Hi again ,
Lets hope you can get the funding in place for this, I did not have maintenance but can understand that every blood cancer type requires a different approach.
Rituximab was part of my initial chemo and I was told it was an essential and indeed effective treatment top get me into SCT.
Stay safe.
