My husband has just been diagnosed with MCL to say we are scared would be an understatement- as I’m sure you all know -

Hi,

Thanks so much for responding to me.

You're treatment sounds exactly like the plan that's in place for me.  I hope it goes as well as yours as has done.  My aim is for a long remission after all of this.

I've been quite well after my first treatment t apart from chest pains and anxiety though I hope that eases.  What was your experience of cycles 2/4/6?  Were you in hospital for long?  Were you allowed out on day release?  I'm not looking forward to that part, though will be at ease knowing I have round the clock medical attention available.

Thanks

RJ

I was diagnosed with MCL 11 years ago. My advice is to stay as active as you can. I coach HS runners and have continued to coach through my original treatment and both relapses. It's tough but you gotta keep doing the things you love. I draw energy from the engagement and activity of being around life. I know it sounds a little out there but hey, when I was diagnosed they gave me 1 to 3 years max.

BTW, I was treated with a modified R-chop and did not receive a stem cell transplant because of a weakened heart from a previous heart attack..

In short, dig down deep and fight like hell. You never know..

Cycles 2/4/6 as inpatient were 4 or 5 days each time, only because one particular drug (cytarabine) is hooked up every 12 hours, 4 bags in total.  There is also constant monitoring of your Ts and Ps to catch any adverse reactions you might have.  No day release and no visitors on the ward, each time I had a private room with TV, mini fridge and en-suite facilities.  You can take snacks and soft drinks, you'll get plenty of water and tea/coffee and 3 square meals.

The biggest thing is keeping yourself occupied - as I said, I bought an e-reader and downloaded some games on the laptop.

When you come to SCT, it's a lot longer - I was in Southampton for 3 1/2 weeks.  Again, in isolation - no parole and no visitation rights, felt a lot like Steve McQueen in The Great Escape

Thanks

I've been told I'll be in for anywhere from 1-3 weeks, though with day release depending on my stats and counts.  I'll do whatever is required to treat and beat this.

Books, music, games, netflix etc... I'm quite content in my own company though will struggle not seeing my wife and 2 sons if they aren't allowed in.  We'll see how it goes.

Thanks for all the info.  Really appreciated.