I'm new to this group. I am the wife of a man who has been diagnosed with Myeloma. He has started chemotherapy (3 weeks) along with various other medications. I am, at this moment, waiting for him in the hospital while he has a bone scan to see if it is in his bones. He also has to have a heart mri and kidney biopsy as they suspect amyloids. He is very positive which is good but I am really struggling. I feel I am watching him on a downward spiral every day and I don't know if this is the condition or the medication. Has anyone had experience of this?? I am desperately worried. We feel like we have been left in limbo land with no definite answers , etc. Please help....
Dear spider, in the early days after diagnosis and starting treatment the body and mind is under a lot of stress, so it’s hard to know whether it’s the active myeloma causing symptoms or the treatment itself. As I’m sure you’ve already worked out myeloma effects every patient differently and treatment has to be tailored to address this. Unfortunately because of this it’s hard for the haematologist to give accurate and definitive answers to questions, it’s very much a “let’s try this” approach and if it’s not successful they lets try something else. These are called lines of treatment and currently the doctors have many at their disposal, so it’s about finding the right one to treat all your husband unique symptoms. So my advice for coping in these early stages of treatment is for your husband to report any concerns he has to his doctor and get him to tell you if this is a normal or an unwelcome side effect of treatment, I often do this by talking to my clinic nurse who can talk directly to your doctor for advice and then you don’t have to wait to see the doctor in clinic. Myeloma is a very challenging disease from a psychological point of view due to the uncertainty it involves so it’s no surprise you feel the way you do as it’s natural to want answers but part of coping with the disease is coming to except that this is not always possible.
Just wanted to add to Johnny’s great post that it can naturally take some time for the treatment to take hold. Three weeks is still pretty soon and so it’s probably normal for you to still be feeling some sort of downward spiral. It was a while before I felt any genuine uplift in how I was feeling. Do you know when your husband gets his first results after being on chemo?
Hi Greg. Thank you so much for your reply . It's so good to 'talk' to some people who have 'been there'.
My husband hasn't got a follow up appointment yet. He had a bone scan yesterday and has a heart MRI on Monday (as there is a suspicion of amyloids ). We are assuming that the hospital are waiting for all the results.
The most worrying thing for me is his breathlessness when he does anything. We're trying to take it day by day but it's hard.
The breathlessness could be anaemia, which is often the case on diagnosis for myeloma. I hope when you get your husband’s first set of results that you will see some improvements. As soon as the myeloma is under control, the normal red blood cells should not be crowded out anymore and the breathlessness should improve. As Johnty says, even if the first line treatment doesn’t work, there are lots of other options out there. It’s all about hanging in there as best you can, which I know is incredibly hard to do.
