Has your treatment team given you any supportive measures… zofran for the nausea, etc. were you receiving treatment weekly?
July 20
What made it unmanageable for you?
July 17
Nausea even with tablets , high temperature loss of appetite pain in gut area pounding headache and unable to function from one session to the next as weekly and fatigue like nothing else . I shut myself away not wanting to see anyone
July 17
Finding DaraCyborD unmanageable is really tough, and it's important to know there are other treatment paths worth exploring with your specialist. Since AL amyloidosis progresses quickly, working closely with a doctor who specializes in amyloidosis is key to finding the right alternative.
Here are some other treatment Show Full Answer
Finding DaraCyborD unmanageable is really tough, and it's important to know there are other treatment paths worth exploring with your specialist. Since AL amyloidosis progresses quickly, working closely with a doctor who specializes in amyloidosis is key to finding the right alternative.
Here are some other treatment options that may be considered:
- Chemotherapy drugs — such as melphalan, cyclophosphamide, lenalidomide (Revlimid), or pomalidomide (Pomalyst), often combined with a steroid like dexamethasone
- Proteasome inhibitors — such as bortezomib (Velcade), carfilzomib (Kyprolis), or ixazomib (Ninlaro), which target abnormal plasma cells
- Autologous stem cell transplant — high-dose chemotherapy followed by reintroduction of your own healthy stem cells; this targets the root cause of abnormal protein production
- Clinical trials — newer therapies like CAEL-101 (which may actually remove existing amyloid deposits) or CAR T-cell therapy (NXC-201) are being studied and may be accessible through trials Your care team will assess your overall health, heart and kidney involvement, and risk level before recommending an alternative plan. Don't hesitate to ask specifically about clinical trials — they can open doors to cutting-edge treatments not yet widely available.
July 17