Hi Kookie47
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Although GPs are often the first to mention the myeloma diagnosis, they are not necessarily well informed. The senior GP in my practice told me that I could be dead within 3 months, that was 6 years ago. Terrifying at the time!
Your mother is likely to get a quick appointment to see a haematologist (& may already now have that appt) but there will be a series of confirmatory tests before a certain diagnosis is given & treatment planned.
The one that takes some time to process is a bone marrow biopsy, not one we patients relish, but is made more bearable if time is given for the anaesthetic to work, or if gas and air is given. It usually takes about 4-5 weeks for these results to be available.
Patients will also be given scans to check for bone lesions, more blood tests to check how quickly myeloma is progressing. (This can vary from extremely slowly, even taking years, to quickly taking weeks)
If the patient has any serious end organ damage (very high calcium levels, serious kidney damage, serious anaemia or sizable bone lesions) treatment will start before all the test results are back, otherwise it’s a safe cancer to wait for a few weeks.
In terms of treatment, it’s likely to depend on your mother’s age and frailty.
If she is under 70 or extremely fit for her age, it could be recommended that she has a stem cell transplant after 4 (or so) cycles of induction therapy of Daratumumab, Velcade, Thalidomide and dexamethasone.
If your mother is significantly older,or younger but with other serious health issues, it may be determined that she’d do better with a less intensive treatment regime, of which there are several.
The aim of all of these, intensive or not, are to reduce the Myeloma level to as low as possible, either until it is imperceptible on blood tests (called ‘remission’) or until it is at a low, stable level. Although statistically uk patients still have longer remissions after stem cell transplants, the process does have the potential for bad side effects (bone marrow damage, potential for secondary cancers later, doesn’t always work), and the approval/availability of recent new treatments are making SCT a more questionable treatment. More lines of treatment are now likely to be available to all of us, and with maintenance now the norm, continual treatment will be usual for both those who have stem cell transplants and those who don’t.
It is heartening that people are living longer with myeloma than ever before, although it’s still exceptional, one of my friends who was not expected to come out of hospital at diagnosis, is about to celebrate living with the disease for 20 years and our local support group has quite a few months members who’ve lived with the disease for over 12 years now.
