It’s worth noting that the frequency of my writing will be subject to how I feel and, for the last few days, I’ve felt pretty rubbish which means this post is a little delayed. I’m lying here today with the remnants of probably the worst headache I’ve had in my life (which being prone to migraines is not a small matter). So I think for a bit of a change, I’ll start with a run down of the symptoms over the last few days followed by the treatments.
How do I feel?
To explain the headache in more detail, it is one of those pounding aches which seems to run across the temples. It is at its worst when I’m sat upright or standing. The doctor said that it could be related to the intrathecal injection or possibly a virus. My neutrophil levels have been low also – in fact I’m currently neutropenic; meaning that my body has less than half the safe levels of white blood cells so it has to work extra hard to fight infection. When I woke up on Friday morning and went for my shower, my headache was so intense that I was sick for the first time since treatment started. I went straight back to bed and apart from toilet and shower breaks and a couple of treatments, I have done nothing other than lying down or sleeping every day since.
In addition to the headaches, I’ve noticed that my finger tips have become sore as if I’d been playing a string instrument too hard, but this is otherwise a minor ailment.
The other key symptom which is related to the course of Methotrexate which started on Saturday morning, is sore mouth and throat. I’ve had mouth ulcers in the past, but this is quite extreme, it hurts to brush my teeth, and the bristles make my gums bleed. I have 3 types of mouthwash which are to be taken 4 times a day. Currently I have sores under my tongue, inside my cheeks and under my lips, my throat feels dry and scratchy and my bowels are in discomfort as the drug can affect the whole system. The mouthwashes do seem to ease the pain a little but even opening my mouth and eating are currently uncomfortable activities.
So as mentioned before, on Friday, I had a Hickman line inserted (see separate post), this is to replace the PICC line. It has 2 lines rather than 1 so the nurses can apply treatment and take blood samples at the same time. I needed this line to be inserted before I could start the methotrexate.
After returning from the procedure, they sent me for an X-Ray to check that the line was located correctly. 30 mins later, the doctor had confirmed ok, and it was ready to be used, they applied flushes as normal then started me on a course of Rituximab. Being the second round, they were able to start the dose a little more quickly but monitored me every 30minutes as before. The course lasted about 4 hours. Due to my headache, I spent most of the time resting and didn’t feel any other effects.
Saturday morning, although I didn’t feel it, I was ready to start my dose of Methotrexate they started by applying saline solution for hydration, along with a series of blood and urine checks. The body finds it difficult to break down this chemical so the hydration helps to give my bladder the best chance. The PH levels of my urine are measured every 2 hours until traces of the chemical are down to an acceptable level at which point the hydration will stop (I’m still on hydration as I write, but expect it to finish today) the chemical was applied in 2 bags which were yellow in colour, the first containing 750mg and lasting an hour, and the second having 5350mg and lasting 23 hours. The hydration course has lasted about 4 days, and I’m looking forward to a night of sleep without interruption every 2 hours!
On Sunday my neutrophil levels dropped quite low so they performed a blood transfusion. Although there is a risk of allergic reaction, it is rare and otherwise the only sensation is renewed energy. My complexion up until this point had started to yellow a little and although this did perk me up a little, the headache was pretty much all I could feel. The course was 2 bags of A-rh positive blood, each lasting 2 hours. It seemed a little strange to think of someone else’s blood mixing with my own and I wondered whether having 3 sets of DNA within my body may affect me, but apparently not!
Monday and Tuesday, I spent mostly sleeping, I was moved to a side room as it came available and having an increased temperature, they felt my headache could have been due to an infection, although I’m still waiting for blood results to confirm. I’ve also been having an injection of folic acid at regular intervals to aid with the recovery process along with the usual array of tablets. I’m due a couple more intrathecal injections, but these have been postponed until I’m well again. The doctor confirmed this morning that once this round of treatment is complete, and I’ve had a few days to recover, round 2 starts which is a little quicker but more intense, and the whole course is repeated once more (4 rounds or cycles in total).