Hi all,
I have stage 4 DLBCL, I'm about to go through my 6th cycle of r-chop chemo Monday, and I heard 2-days ago that they found the CD5 chromosome marker which indicates that my stage 4 cancer is even more aggressive than they thought, and really sneaky. I was told that even though my mid chemo scan revealed I was mostly in remission, and they expect my end of 6 cycle chemo scan to reveal that I'm in full remission, however they said it will come back, and very quickly.
So they need to give me powerful LACE chemo followed by stem cell transplant in January. It would be using my own stem cells.
I've been skimming through some posts here, and although I haven't read all of them, so far I can't see any posts here that talk about the period in hospital and what happens and how it feels. I'm sure there are individual profile stories that contain this information but I haven't got that far yet.
I've been told I will have to be in hospital 3 or 4 weeks but I just need to know what it's like. I will be going into Hammersmith Hospital I think.
Will I be in a plastic tent in the bed? Or not? How does the LACE and SCT treatment feel? I was warned I might end up in ICU.
I'm 70, but of course a really young "cool' 70, and I have a positive strong attitude, strong body (except for the the Cancer destruction of my right tibia), but I must admit that this news has really rocked my confidence and I'm feeling very low and a bit weepy about it all.
I don't know if there would be any TV in the room, I presume so, but presuming there is decent Wi-Fi I'm guessing taking a tablet, cell phone and some books will help. Would you recommend audiobooks as well? Because I know when I'm receiving even the r-chop chemo I really don't feel like reading. So I thought an audiobook would be nice. What else? Please let me know your experiences if you've had LACE as well, that would be very helpful thank you so much.
Virginia
Hi klip you have been posting some great first hand information.
You may want to consider collecting all your experiences and setting up your profile as often people look at members profiles but don’t put up a post in the groups. Info on how to put up a profile us at the bottom of my posts.
From reading your posts the process in the UK is much the same as you have explained with SCTs being dine in dedicated SCT treatment units.
Do you know the exact name of your conditioning chemo that was used to kill off your immune system?
Sorry to hear that you had bad mucocitis, this was unfortunate. I had no problems with my mouth during both my Allo SCTs and this was down to the great pre/chemo oral care that my SCT used and especially during the drug Melphalan.
