Actually saw my haematologist yesterday.
He thinks I may be eligible for a allo Car-T trial, and hoping that it stabilises my condition enough to do an allo SCT either end of this year or early next year.

If not eligible for the trial, I'll be taking a fairly new oral chemo drug, with the same hope of stabilising things enough to do an allo SCT.

Rebecca 3 your a fighter also take care

Yikes...your journey has had some significant twists and turns.

I am a quasi weirdo as my NHFL seems to still be in remission since Nov 2021, but the Whipple surgery to remove the obstruction it caused, came with it's own set of lifelong consequences. I will have GI issues forever. My GI problems, damage to the pancreas, removed parts, and subsequent malabsorption/malnutrition issues on top of the NHFL add to the mix. I know that the literature says your immune system is compromised with this blood CA and that it increases your chances of other CAs. Definitely had more infections that I am not so good at fighting off anymore. My skin CA has returned/escalated in the past couple of years as well as suspicious developments in my breasts that make me high risk. Then there is a "cyst" by my ovary that is slowly increasing in size.... so I hear you on the scares that keep needing to be monitored. The icing on the cake is the osteoporosis that I feel is directly related to the malabsorption/nutrition issues and medications. That reared it's ugliness just last month when a simple slow slip on the tile resulted in a leg stress fracture. Strange new nodule of the thyroid along with hypothyroidism appeared in the last couple of months and steady hair loss over the past 3 years (without any chemo or immuno therapies). My last NHFL checkup, the CT report suddenly reported a couple of nodes in my neck that are enlarged but listed as "stable" and the new thyroid node. Don't know when they started because they have never been mentioned before. The onco looked at my CT/ labs and said everything was great - see you in 6 months. She was not going to mention any of the new developments at all. I don't know what to think anymore.

Join me in trying to stay positive and living one day at a time. I sure hope that they can get you back to a good/better place. Hugs!!!

They haven’t mentioned stem cell transplant or car t?