Hi, so diagnosed sep 2012' stage 1V MCL, with bowel involvement, was put on watch and wait but by sept 2013 was having bowel obstructive symptoms and a ct scan showed disease progression, so I needed to start chemo. I was advised RCHOP, and RCytaribine on a 7 week
Cycle with the aim of a allogenic SCT at the end of 3 cycles. I tolerated the treatment pretty well but was frequently in hospital with sepsis and had cytaribine as an inpatient. I had my SCT in March 2014 from my brother a perfect match and was only in hospital for 4 weeks. Things have gone fairly well, no major problems but still early days, would love to hear of others with MCL as I know we are a rare breed, any support gladly welcomed for both me and my wife who has found it tougher than me at times
FormerMember
Hey, welcome to blogging and I'm glad you found the site.
I don't have experience of mantle cell lymphoma; I fall into another rare non-hodgkin lymphoma group but I've found a lovely lady who's the wife of someone with the same condition as me so I'm sure you'll be able to find someone with similar experiences.
If you've not done so already, have a look around the forums. The lymphoma ones aren't very busy but there are a couple of members who have some really good experience of the disease and will reply to you in time if you post anything.
Glad to hear things are going fairly well but I know it's really stressful getting to that point. There's a group for friends and family that your wife could join if she wanted to join the site too :)
I am in a similar position to you. I was diagnosed Feb 2014, 6 rounds of RCHOP / Cytarabine as an in patient. I had an allogeneic SCT on 21 July so early days for me (T+37 to be exact). My brother was my donor with a perfect match too :-)
It's a mental battle as much as a physical one. Happy to chat anytime
