Hi my husband has been diagnosed with aggressive stage 4 DBCL no subtype yet. He has a large mass in his abdomen & lots of fluid around his lungs. 1 round of RCHOP which initially worked then after 14 days he started to fill with fluid again. 2nd cycle has been changed to IVAC but his breathing deteriorated day before starting the 5 day course so they drained some fluid to enable them to start. Fast forward to today hes in ICU under excellent care, haematologist consultant has been to see us today & after 3 days of chemo is concerned as there is no sign that the lymphoma is dying off, hes to finish the next 2 days of chemo & they'll check but if not they've said theirs no more chemo. It seems very early to me to decide that, how quick do you respond to IVAC chemotherapy? Plus we were told if it didnt work there's a cupboard full of other chemo that might, we're devastated & just wanted to know if anyone else has had this happen? Thankyou xx
Hi TOBE and welcome to this corner of the community but sorry see you joining us and more sorry to hear about the journey your husband and indeed yourself are on.
I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a and although my ‘type’ is rather different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.
There is no one size fits all when it comes to treatment and as to how quick they work as it is all about the persons NHL presentation so let’s look for the IVAC to improve things quickly.
His consultant is spot on when they say there is a cupboard full of treatments available to use. I relapsed a good number of times over my years, we used various treatment but eventually they found the best combination and got me into remission back in Sep 2016. This is more remarkable in that in 1999 I was told I would never be in any long term remission and would have treatments most of my life…… so there is lots of hope.
It is scary for you looking on. My amazing long suffering wife Fiona will always say that as much as she wanted to control what was going on it was impossible. I was in ICU on two occasions but she always trusted our clinical team and did her best to control the battle that was raging between her ears.
The fact that you have found this community is a great help for you as during my treatments we had no idea that something like this existed as it would have been a great help talking to others who have walked this walk.
Hang in there, this is going to be a long bumpy journey but we will always be around to listen and help as best as we can ((hugs))
Hi again, this is a scary time but all you can do at the moment is hold your nerve and trust in the teams.
IVAC is often used as a salvage treatment that leads onto treatments like CAR-T and even Stem Cell Transplant (I had two Allo (donor) Stem Cell Transplants)
His team will have a good idea if things are going in the right direction even although that are saying Friday so keep the conversation going with them and look for updates from them ((hugs))
