Hi. I’m new to all of this so I’m going to try and be as accurate as I can but I’m learning all the different terms and it’s quite overwhelming. My husband had an emergency bowel resection 12 weeks ago as his bowel had ruptured. The surgeon informed us that they had found an abnormality but had completely removed it. We were then told that it was a T4 tumour so they were going to scan his lungs and liver to see if it had spread, good news was that it wasn’t in either structure. A few weeks later the surgeon told us that it was lymphoma and that we would be seen by haematology, this took a further few weeks. When we met with the haematologist he informed us that he has high grade non Hodgkin lymphoma, he would require a PET scan to establish staging. Since that pet scan we have been told that it’s stage 4 advanced DLBCL. He has just begun his RCHOP but they couldn’t give him the R as they are worried about his kidneys so he will start that on his next cycle. I’m so overwhelmed with it all, I’m unsure if high grade non Hodgkin lymphoma and DLBCL are the same thing? I’m petrified about the future and I’m lonely. I haven’t worked since he’s been poorly as I have to care for him, physically he’s declined a lot and he’s in bed most of the time. He barely eats anything and he’s completely exhausted.
Hi FadedFlamingo and welcome to the Online Community although I am sorry to hear about your dad’s diagnosis.
I am Mike and I help out around our various Lymphoma groups. I was diagnosed back in 1999 with a rare, incurable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.
Your dad’s DLBCL is one of the many types of Non Hodgkin’s Lymphomas…… there are over 60 types and subtypes of Lymphoma….. yes very confusing.
The Community is divided into support groups (discussion rooms) so can I suggest you consider joining our supportive Diffuse large B-cell lymphoma group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) link(s) I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
I will keep an eye open for you in the group and can give you more information in the group.
Sorry about that - it’s been a long day.
