Hello everyone
I'm new to the group, so I thought I'd drop a line or two to introduce myself and our situation.
I'm husband to a wonderful woman who has refractory DLBCL.
Diagnosed initially at the end of 2017 with Stage 4 DLBCL she went through R-CHOP and Salvage chemo, after which time she was due to have a SCT, but had heart failure which put paid to that. The chemo had not got rid of all the cancer and some active cancer remained in her spleen. Her spleen was then removed to put her into a technical remission and she's been pretty well since. She started on maintenance Rituximab but didn't have the full course due to the pandemic.
Her heart has got a lot stronger but unfortunately a couple of months ago she had a chest X-Ray that showed a mass, and a subsequent scan and biopsy confirmed the DLBCL was back and survival without treatment would be short.
She's been put forward for CAR-T therapy and her case is due for discussion by the medical panel on Tuesday.
The main potential stumbling block could be her heart function, due to the heart failure caused by her previous treatment. But this is at 40-50% and 50% is at the lower end of normal, so we will be extremely disappointed if it gets refused (bearing in mind the alternative!). Hopefully we will get a green light for this stage on Tuesday. Then we'll need to go to meet the team who will conduct the procedure for their OK.
Then it's full on with apheresis, then steroids and bridging chemo to keep the lymphoma at bay while we wait for the return of the modified T cells.
We know the process is fraught with danger and will be no walk in the park, but it's a course we have no choice but to follow. She's 56, and my two sons and I are very anxious, scared and apprehensive. But she's as tough as they come, so we don't doubt her ability to withstand whatever comes her way. And we will be happier after Tuesday is over, as we need agreement from the panel that she is strong enough, heart-wise, to endure the treatment. We know for a fact that she is, we just hope the panel members agree.
So that's where we are: positive, but scared. I've been reading through a lot of similarly positive posts and they have been very helpful and inspiring. And I hope that as our journey progresses we can add to that bank of success stories too.
Thanks for listening
Hi and welcome the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our Lymphoma groups.
We have had a few folks go through CAR-T over the past few years. CAR-T could not be used for my type of NHL (hit my community name to see my story) but have had two Allo (donor) Stem Cell Transplants (SCT) and yes these were hard but did the trick for me. But if she has any underlying medical conditions SCT will not be used. The ironic thing is I now have a heart condition due to my SCTs.
There is one person in the past who has had both a SCT then CAR-T and she said the CAR-T was much less demanding so be encouraged.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many support groups.
I see you have joined our Diffuse large B-cell lymphoma and Stem cell transplant groups as these will be good places for you to connect with other folks who may be on the same cancer treatment pathway.
Navigating the community will depend on the device you are using. To go to the groups just click on the green link above then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post.
You can also join in with existing ‘Discussions’ by clicking on 'reply'.
Could I also suggest you use the search 
tool near the top and put in CAR-T as this will bring up all the old posts where you can have a look through and reply and see if the members are still posting as once treatments are finished some folks do move on with life.
I will keep an eye open for you and if you need any more help to navigate the site or just want to chat more you will find me on this thread.
