Hi Koalacub
It’s always very shocking to the patient and family when given the diagnosis of myeloma & frightening even when there isn’t a pandemic. The best place for information about myeloma is Myeloma UK, either the information sheets or direct contact with the nurse or other staff, who are lovely.
There are at least a dozen subtypes of myeloma, and it’s thought myeloma is the cancer with the highest number of prognostic parameters.This means that myeloma tends to be a pretty individual disease, with different patients experiencing different symptoms, or degrees of symptoms at diagnosis and during the course of the disease.
However having said that, for most patients it is very treatable, and in USA now 14% of patients live for over 20 years.
When I was diagnosed, almost 3 years ago, I assumed that I was on a slippery slope, that I’d never feel significantly better. However that has not been true for me, and I am now perfectly well for the time being. There are a heartening number of treatments now for myeloma and your father is likely to start on a combination of treatments shortly, depending on any other medical problems he may have. It usually takes around 5 or 6 months (again this is variable) to get myeloma initially under control. About 50% of us then have a stem cell transplant to stabilise the myeloma, often giving a few years (sometimes more) without active disease. The problem is as yet that myeloma does always return, genetically mutated so that the drugs previously used are ineffective. There are a number of new drug types in trials now which may offer those of us in the early stages of myeloma, significantly longer lives.
Myeloma drugs are often called “chemotherapy” by us patients, but they are really much more targeted drugs. They do have side effects, usually, but not things like hair loss, and some of us get through with minimal problems except that the treatment process takes over life for a time.
Your father should have access to a named myeloma nurse who will be able to point your parents in the right direction, depending on you
How old is your father? The average age at diagnosis is around 70, but it’s a disease that can hit at any age, (although it’s exceedingly rare in under 30s.)
One of my friends was diagnosed in similar circumstances to your father and was wheelchair bound for around 6 months. Now 17 years later she leads a physically active lifestyle, long walks daily and looking after an allotment single handedly, no obvious evidence of the damage myeloma did to her spine.
It must be so difficult for you separated from your parents because of the pandemic, but I hope that your dad responds well to treatment (that may include more non drug treatment to his spine) Best wishes.
