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How to begin…

February 15th, 2019

So they schedule a bone marrow biopsy to see level of infection for Tuesday 12 Feb. Also tell me the have requested an urgent MRI and I should hear from radiology shortly.

Biopsy is not really a fun thing. It involves sucking out bone marrow with a needle then taking a bone plug out (about 2cm long). Its not that sore given that they use local aneasthesia but its quite uncomfortable and a bit sore later when the meds wear off. After the biopsy we have a meeting with my assigned contact who is going to go through all the options etc – start my “counselling”. What this really means is helping get to grip with the situation and more particularly the side effects and impacts of proposed medication.

What is it?

Myeloma, also known as multiple myeloma, is a blood cancer arising from plasma cells. At any one time there are around 17,500 people living with myeloma in the UK. It accounts for 15 per cent of blood cancers, and two per cent of all cancers. Myeloma mainly affects those over the age of 65, however it has been diagnosed in people as young as 20.

Recommend reading more about it on the Myeloma UK website.

It is a blood disorder and bone marrow disease.  Plasma cells (white blood cells) in the bone marrow are faulty.  These cause Lytic Lesions to form on the bones which weaken them.  Repercussion eventually is that bones get weak and may break if not treated.  This is particularly a problem on the spine since vertebra that are weakening can lead to a fractured spinal cord. I have lesions on the lower back and other places confirmed by CT scan.  Probably these led to my back pain late last year although the Prof is somewhat confused as to how it cleared up in January!

What is the treatment plan?

The initial plan is what they call induction. This basically involves 4-6 35 day cycles of low grade chemotherapy.  This should cause the lesions to reduce or disappear and reduces the infection. After induction I will be admitted to hospital for high grade chemo and about 3 months of unpleasantness – more about this later!

The induction treatment is referred to as VTD Treatment – Velcade, Thalidomide, Dexamethasone.  Velcade to be injected weekly at hospital.  Others oral. Side effects include a reduced immune system and Fatigue.

Implications: 

  • No travel unless seriously urgent – have to be in hospital weekly and also very susceptible to disease
  • Stay away from disease (crowded tubes etc)
  • May be tired
  • Pain (more of a side effect from the disease)

I will give up smoking and reduce alchohol.

What happens after induction?

Essentially they “Reboot the immune system”.  Quite an interesting process although it will not be pleasant! This involves a number of stages:

High-dose therapy and stem cell transplantation (HDT-SCT) a slightly misleading name since they don’t actually transplant someone else’s stem cells – rather give you your own back!

In order to harvest healthy stem cells from my body they reduce the healthy cells in the bone marrow right down then pump them up again (using drugs over a week or so).  Then when the Stem Cells are being over produced and spilling into the blood (as the body reacts) they hook me up for a few hours to a machine that harvests stem cells from the blood into bags.  Stem cells are what makes the blood and do not get infected with Myeloma – this happens when the white blood cells are created.

Then I go to hospital for high level chemo.  This basically destroys loads of things good and bad including probably my hair and hopefully the remaining myeloma cells. After a few days killing stuff they put the harvested stem cells back into the body to help it get back on track making good blood. I will be in hospital for this for about 3 weeks after which it will take about 3 months to recover. Hopefully then I will be in remission!  

Myeloma is one of the most rapidly advancing fields of cancer research at the moment with huge strides made in the past 20 years with treatment.  It is likely that there will be further improvements in coming years.

My Chemo is scheduled to start 15:00 Friday 15th Feb. I will pick up the story there…

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