Hi Nicki,
You say that Adrian and his Doctors were both positive after his first cycle of his frontline treatment… with a drop in his light chains from 327 to 37 he would have every reason to be positive. The fact that his Doctors were positive as well suggests that they were not too worried about his other problems, specifically his amyloidosis.
You also say that he was hospitalised after his amyloidosis diagnosis but before they discovered that he also had MM. That is what you need to have clarified by his Doctors in my opinion. Just how ill was he before starting treatment with his frontline chemotherapy. There are quite a few people on this board who have had treatment postponed or cancelled until further notice due to secondary problems or illnesses. The fact that they allowed Adrian to start treatment suggests that they were not overly concerned with his secondary problems. There is no doubt that his chemotherapy treatment would have an effect on Adrian… some of us get through it relatively easily but others have had a torrid time.
Q 1. Did Adrian have his 2nd Cycle? – From March 20th to April 24th suggests that he would have been due to have had his 2nd Cycle and if he did have his 2nd Cycle then what effect could that have had on his body – especially in relation to the cardiac nature of his amyloidosis.
Q 2. If he didn't have his 2nd Cycle then why not? – Was it postponed or cancelled due to illness or poor blood readings? if so then the Doctors should be able to tell you why… and if it was due to his amyloidosis, especially cardiac amyloidosis, then there might be where the problem lies.
I appreciate that you and your family will want to know the answer to these questions and I imagine that you feel a lot of pressure to come up with answers because you are a nurse… but we know it doest work like that. Adrian's death certificate will give a clue to what caused his death but a proper report from his Haematology team will go a long way towards giving you and your family some sort of peace of mind.
Adrian's light chain decrease shows that his frontline treatment was working very well and without the secondary problems, especially the cardiac nature of his amyloidosis, he may well have lived for several years. MM treatments are designed to knock back the MM several times, hopefully with 2 or 3 lengths of good remission, where more or less 'normal' life can be enjoyed. MM is a very personal disease so it is very difficult to say how long Adrian might have lived… dependant on how well he responded to the different treatments. It is the 'cardiac' nature of his amyloidosis that worries me but I am only a patient and I am only trying to look at Adrian's MM and related problems in a way that might help you formulate some questions for Adrian's Doctors so you can [i]'Try and understand what might have happened'.[/i]
I would like to extend my best wishes to you and your family and I hope that you are able to support each other through this time.
Best regards
Dai.
tom 11 years, 6 months ago.
