Hi Robyn and good to hear from you. The dara is very effective for me and i get a blood test for kappa and lambda every 4 weeks to make sure that the treatment is working. I have not had any traces of paraprotein in my blood since spring and hopefully that will continue for sometime. I also stated dara with bortezamib but I developed a problem with the nerves in my tummy and had to stop it after the minimum dose, hopefully you won't experience the side effects I did. I also take dexamethasone. I was originally taking 10 pills on the day of treatment and 10 the following day but I am now only taking 6 on the day of treatment. The withdrawal from the dexa is the only significant side effect I have but it only lasts a couple of days then things are back to normal. I haven't had revlimid so not able to comment on it but the other drugs you are about to start have been great for me and \i pray they work well for you too.
I don't know what my heart EV is but I have been getting MRI scans every two years and the last scan in July showed an improvement in its condition compared to the one in 2023.
Once a year I attend a specialist clinic in London known as the National Amyloid Centre and they do a battery of tests and recommend any treatment changes to my consultants here in Glasgow. They would normally carry out the SAP scan as it is the only place in the UK where it can be done but as I said earlier they have not been able to do it due to the lack of radioactive isotope, however now they have it back again I will get it next July and we will be able to see how many fibrils the body has been able to shed. It takes a long time to shed them but I am sure I am slowly but surely getting rid of them. My kidneys were badly affected but my kidney function has now returned to normal and is sustaining its recovery. The renal consultant was seeing me every month but he has now discharged me as the kidneys are functioning well again. I am sure the heart will be doing the same and my cardiologist only checks on me once every 6 months now where as it used to be every month.
I take a few other medicines to help maintain my health. I take water pills, folic acid and edoxaban which all help with keeping my body functioning as it should.
I have asked before about the stages of myeloma and amyloidosis but I have never had a definitive answer but I will ask again next Thursday when I go for my treatment.
I hope that at least I am giving you some positive encouragement that the treatment you are about to start will have the same outcome for you that it has for me. Please don't hesitate to contact me if you have any questions at any time, especially during your treatment.
Kind regards,
Ian

Thank you Ian! Very encouraging! We have pet scan and start treatment next Tuesday. Right now he is stage 3a. Were you at this stage too? Do they update the staging as numbers get better?

I have the same and been treated with the same drug mix that you are about to start. It worked very well for me but had to come off bortezamib after the minimum period of time that was needed, a few months and continued with daratumubab thereafter. The results were very positive and my kappa and lambda counts have been around 6 to 7 each time I have my blood tested. I am now in remission and have been for this year and able to get to the gym and continue with a normal life. I have a maintenance injection of dara every 4 weeks and I have not had any side effects. I am not able to tell how many fibrils are still deposited in my heart but it is much less that when I started out on treatment 4 years ago today on chemotherapy it did not work very well for me so I started immunotherapy two years ago. I would normal have a SAP scan once a year but there has been a world shortage of the radio active isotope I need before the SAP scan but it is available again and I will get the scan next July and then I will know how well the treatment has worked on my heart and other major organs.
I pray that this treatment will work well for you and that you will be able to enjoy a better quality of life.

I was diagnosed in January 2022 after 10 months of running from Dr to Dr. I was on weekly chemo starting april 2022 to October 2022. Since then I am on biweekly chemo as maintenance.

Have you started treatments? When did you find out?