I have been on chemo for about four weeks, twice a week i go to clinic. Haematologist told me yesterday that my light chains are now normal, which is a great result, as they were attacking my heart . That is step one. Now to try and reduce the thickening of the heart wall which is causing problems. So I am intetested to know if the heart is safe from this build up of protein. I am amazed how quickly the chemo worked. I am still on it till the end of the year.

Radiation is NOT typically used as a treatment for systemic AL amyloidosis! PLEASE make sure you are seeing an amyloid specialist and get a second opinion before having radiation. There is an Amyloid center in Westmeade. https://aan.org.au/aan-clinic-centres/

Amyloidosis Centres and Affiliate Clinics - Australian Amyloidosis Network

https://aan.org.au/aan-clinic-centres/

I’m on maintenance chemo now which is Dexthramethasone, velcade & darzlex. Don’t really have a problem with treatment. My first 6 months I was on all of the above plus cytoxin. I fell into complete response in the 6 months. My biggest problem is GI issues but that’s because amyloid is in my GI tract. I passed on the SCT. After going over all the things that could happen we both decided it would be better for me to stick with the regular chemo treatment.

I keep reminding myself that not every ache and pain (and cold) I get is AL-Amy. Not always easy to do. “Normal people” get the flu too. ;-)
Don’t get too far ahead of yourself worrying with the treatment road; one step at a time. Chemo wasn’t bad at all for me. everyone is different. Stem Cell was another story. I’m sure your medical team will walk you through everything. Once you do one treatment you’ll figure out how best to prepare for the next one, what to bring, what to snack on, etc. sending positive vibes your way!