blood and bones

(image from macmillian cancer research)

Some better news. I was in UCLH to have my PICC line (peripherally inserted central catheters) dressed. This is a tube that’s inserted into your arm and pushed up your vein into your heart. It’s used to administer drugs and take blood tests. I’ll have it until I my stem cell transplant is finished. Anyhow, I got the analysis of the MRI scan back which was good. Previously I’d had evidence of advancing disease (lesions) in my ribs, a couple of places in my spine, hip and left scapular. The stem cell transplant will in theory snuff out the remaining disease… for a bit anyhow.

Bone damage is one of the most widespread side effects of myeloma, here’s a description from the Multiple Myeloma Research foundation:

The most visible aspect of myeloma disease is its effect on bones throughout the body. In the majority of patients with multiple myeloma, soft spots develop where the bone structure has been damaged. These can extend from the inner bone marrow to the outside surface of the bone. Soft spots appear as “holes” on a standard bone x-ray and are referred to as osteolytic lesions (see figure). These lesions weaken the bone, causing pain and increasing the risk of fractures. 

See more here.

The three months of chemo I’d had from January seem to have stopped these developments in there tracks, indicating that the particular form of treatment I had at this time works for me (PAD more here).

Here’s the data:

For detailed description of parameters see the Data Methods part of this website

Stoicism: Grin and bare it 5

Mood: reasonable spirits ≈ 7

Control: Some controll = 5

Discomfort: moderate = 4

I was in at UCLH this morning, today was the big day, I would be receiving the stem cells collected back following  a high dose of melphalan – another mustard gas derivative that is nasty and evil enough to kill of lots of the remaining myeloma cells.

I cant describe to you the psychological import of this, I’d been working toward this point since I was diagnosed in November last year, and the last couple of days had been particularly difficult, anticipation, fear, sleeplessness.

I had the usual round of blood tests and waited for the doctor to drop by to sanction the chemo; I was called into a side room and waited. Unusually, the duty doctor was accompanied by the esteemed professor; something was wrong here. So what transpires is this, the lab had used the wrong preservative on the stem cells they’d collected last week. All 8.7 million of them were tainted and I will have to go through the stem cell mobilisation and collection process all over again. For some sense of the horror of this read here, here, here and here.

In addition my latest MRI results are ambiguous to my interpretation anyhow and I’ve asked for some analysis back. Some of the lesions appear to have stopped developing but others have appeared.

This is very distressing.

Here’s the data:

For detailed description of parameters see the Data Methods part of this website

Stoicism: I don’t want to talk about it: 1

Mood: very low ≈ 2

Control: No control at all = 0

Discomfort: moderate = 4