Days 11-15 Chemotherapy

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.

The treatment.

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!

Blood transfusion
Blood transfusion

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).

Days 8, 9 and 10 Chemotherapy.

So they say to start the year as you mean to go on, although for me 2015 in bed with a headache was not my intention, especially having not had a drop of alcohol for months!

The treatment

so just as I was settling down for my second evening at home on Monday, I had a call from the ward asking me to return in the evening at about 8pm. Frustratingly due to the bed shortage, a vacancy had come up and they were concerned that if they didn’t book me in straight away they’d lose my bed. So I spent the night of the 29th back in Worcester.

On Tuesday, I was due to have a short treatment of vincristine, followed by my intrathecal injection on Wednesday. The doctor said I would be able to go home afterwards noting that I couldn’t start any more treatment till my Hickman line was put in on Friday.

Vincristine

This time, the fluid was clear in colour and only lasted for about 15 mins followed by a flush. I didn’t experience any reaction to it apart from a bit of tiredness about an hour later.

Cytarabine

The next morning, in preparation to my intrathecal injection, I was told that my neutrophil levels (a measurement of white blood cells) were starting to fall. This meant that I’d need a daily injection to help my bone marrow replace white blood cells and reduce risk of infection.

I had to negotiate with the doctor as I was hoping to go home to see the new year in noting that I wouldn’t be back home for several days after the next treatment. She said that as long as I monitor my temperature and provided I had my injection before I went home, I could go home and return the following afternoon to receive the next injection.

The Cytarabine was administered through my spine (intrathecally- see separate post) to help it interact with blood cells in my brain. The procedure was fairly pain free and lasted only 30 minutes including preparation. After a short rest, I started to get a severe headache which continued through the evening. I had a lift home from my brother during which I struggled to fight nausea and dizziness caused by the headache. I arrived home and had some water and paracetamol which helped numb the pain a little. I rested in front of the TV with Liz to see out the remainder of 2014.

I felt a little guilty as Liz decided to stay with me rather than celebrating the new year with friends, but I’ll make it up to her next year. I couldn’t stay up all night so went to bed at about 10:30 and read a little before drifting off and sleeping as best as I could with the nagging headache in the background.

I woke up the next morning with the headache at a stronger pace. After breakfast, I went back to bed and spent the first part of 2015 in bed. It had subsided a little by 14:00 so I went back down for a lovingly prepared soup for lunch.

At about 16:30 it was time to return to the hospital and having eaten my final meal of the day on the ward (instant vegetable soup, which incidentally I will be happy to see the back of) I’m sat here writing to you. Tomorrow I’m having my Hickman Line put in which I expect to be a little more painful than the PICC line, but its apparent complexity intrigues me, and being a local anaesthetic procedure, I’m sure I’ll be able to tell you all about it tomorrow. So till then Happy New Year…

Lumbar puncture with Intrathecal injection

Yesterday, I had an intrathecal injection. I was expecting this to be quite painful and was a little apprehensive after the bone marrow sample. The main side effect for me (although I’m prone anyway) was a massive headache which knocked me out a bit, hence my tardiness in writing. Feeling a little better now though so here it goes:

What is it?

Due to the nature of my cancer, the treatment needs to get round the whole body including my brain in order to target any rogue cells floating around in my blood. In our neck, we have a protective defence which filters blood and minimises the risk of infection to the brain. This mechanism (the ‘blood brain barrier’) also prevents chemotherapy drugs from accessing the brain also.

In order to bypass this system, the doctor performs this procedure which applies the chemical into the spinal fluid which can then circulate into the brain effectively.

The Chemical and how it’s applied

Apparently, this method can also be used for some anaesthetic and other treatments, but in my case the chemical used was cytarabine.

I was asked to lie on the bench curled into a ball on my side. I had to bring my knees quite high and bunch my shoulders over. Explaining the procedure as she went, the doctor said that she’s aiming for the gap between my Lumber L2 and 3 vertebrae between the disc. The spinal column finishes at L1 and is then followed by a chain of nerve endings (like a horses tail) so the doctor is very careful and slow in order to avoid these. By curling up, the gap between the disc and vertebrae is opened up to make the targeting easier.

Once she had found the location and cleaned the area, the nurse applied the first needle which was an anaesthetic (a gentle scratch). She tested the area and I still had some sensation, so she applied a little more, I couldn’t feel the needle at this point.

The first step is to remove a small sample of fluid for testing. They try not to take too much as the release of pressure can be painful, so they just remove a couple of drops. Once this is done, she then applied the treatment which for me was 70g dissolved into a 3.5ml solution. Although being a small amount, she injected very slowly to minimise discomfort.

Once complete, a dressing was applied and I was slowly sent back to my bed. In order to help the chemical travel through my spinal column, I was asked to lay flat on my back for 30 minutes.

How did it feel?

The procedure was in fact pain free. I felt a bit of pressure as although I’m lean, there is still quite a way for the needle to travel. Otherwise and for the next hour or so, the only sensation I felt was a slight light headedness from lying still. After this, however, I did start to get a headache. I’m fairly prone to headaches and I get migraines so I was expecting a headache in some form, but this was one of the stronger types of headache in the realm of serious hangover or post migraine shock- it lasted for several hours and although I slept through it, it returned the next morning. It’s now gone after a period of about 12 hours.