I’m starting to feel a bit stronger, getting used to the cycle of medication, how it affects me and understanding when I can plan for more energetic activities and when I’m likely to need to rest… I’m recognising a rhythm to this initial phase of treatment.
So, I am planning a wee trip to Liverpool to see my mum and up to Yorkshire for a short break in the Spring countryside next week during my week off the heavy drugs, when I’ll probably feel quite good. And an even more exciting plan is starting to take shape… to visit Paris (I’ve never been!) in June, prior to having my stem cell transplant.
I saw the specialist nurse last week and asked more detailed questions about the transplant… I feel I am ready to hear it and face it now, which I couldn’t in the first few weeks.
The initial phase of treatment is about 4-6 months… barely enough time to really appreciate the “rhythm”, but hopefully enough for the drugs to have a beneficial effect on lowering my paraproteins. Paraproteins are the totally useless ‘product’ that Myeloma creates, which clog up the kidneys.
The aim is for the initial treatment to reduce the levels of paraproteins to zero, or as close to zero as possible. This would count as a good response, which would lead to a stem cell transplant. If the myeloma does not respond or only partly, then different decisions are taken. I won’t go into that at this point, as so far, all signs are very positive.
So, at the 4-6 month point, providing a low enough paraprotein level, this is what happens next…
A small procedure is done to create a “central line”, also known as a Hickman line. This is a tube used to give chemotherapy and other IV procedures. It saves having to keep inserting and removing needles and cannulas. It goes into the chest, directly into one of the major blood vessels and is tunnelled under the skin, so that while it exits the skin around 5–10cm below the collarbone, the tip of the catheter actually sits in one of the large veins that lead into the heart.
The end of a central line hangs out of the chest and is usually sealed off with a cap and covered with a plastic dressing. This will stay in place for the next few weeks to allow for all the following things to happen. Not very “pretty”!
Week 1, Thu: Stay overnight in hospital to receive chemotherapy.
Week 2, Tue: Receive injections of a growth factor (Granulocyte colony-stimulating factor to be precise!) into the stomach. This stimulates the stem cells to grow and the bone marrow to release the cells into the blood. The injections are done at home, either by me, or a district nurse. They’re similar to a diabetic injection and don’t hurt… apparently.
Week 2, Fri: Check blood count.
Week 3, Mon: Check blood count again and if all’s well, collect stem cells. Hopefully, this takes just one day, but if not enough cells are collected, it may need to be repeated the following day.
For the transplant, I will need to go into hospital.
Day -1: Receive a high dose of chemotherapy (Melphalan), which WILL cause hair loss and may cause sickness, although they give an anti-emetic as part of the treatment.
Day 0: 24 hours after the chemotherapy, the stem cells are infused
Day +1 to Day 10-14: Blood count drops and wait for it to come back up. Once blood count is back to an acceptable level, you get to leave hospital.
Next 2-3 months, recuperation! It’s like having a brand new immune system, so you’re vulnerable to infection. So no hanging out with sick people, eating unpasteurised foods (like being pregnant), or getting into any other trouble!
After all that… I hope to be in remission… for a number of years!
So another plan is hatching… to take a well-needed and well-deserved holiday in the sun in the late autumn… Canaries maybe? I’ve never been there either!