6 August 2015 – Chemo for the Third Time (Bendamustine) (Cancer and Me 36)
I don’t even know what to write, I’m so tired. Why am I so tired? I guess it’s partly because of the prednisolone. Even when we were on holiday I struggled to sleep much after 5am. The prednisolone also seems to make my legs and hands feel weak (I also regularly get cramp in my hands and in my legs and feet). But I guess the Bendamustine is probably playing a part, after starting on that yesterday.
The other reason I don’t know what to write is because it’s so… how can I put it?… Old hat? I go to hospital, I get cannulised, IV flush and anti-sickness pre-med, then Bendamustine gets hooked to the IV, takes half an hour to go through, final IV flush, decannulise and go home. Done! Yesterday, after seeing the doctor at 9:30am, I was being cannulised shortly after 10am and was home by noon. And then I was able to work at home in the afternoon. I was home by 11:30am today (Bendamustine is delivered on two consecutive days every four weeks).
The doctor informed me that my bone marrow is clear, and that the blood test results from the day before are all normal. He examined me as usual and thought he could feel that the prednisolone had softened the lumps in my groin. I was a bit sceptical because I have continued to be uncomfortable at times over the past couple of weeks. The one lump that has always been externally visible is still there, and the doctor said that he had expected that one to have gone, so he was a little disappointed.
I am keen to get off the prednisolone, as the side-effects I mentioned earlier are getting quite annoying. But since I’ve been on it for more than three weeks I have to come off it gradually. So I’ll step down to 15mg per day for the next week, then 10mg per day for another week, then 5mg a day for a further week, then 5mg every other day. So it will take me another four weeks to get off the drug completely.
I was given quite a few other TTOs (Tablets to Take Out) as well, including different drugs to manage different side-effects of the chemotherapy (with the dosages just so you can see how complicated it gets):
- Aciclovir – (anti-viral) twice a day
- Co-Trimoxazole (or Septrin) – (preventative antibiotics) one on a Monday, Wednesday and Friday
- Ondansetron – (anti-sickness) twice a day for three days starting on the first day of chemo
- Metoclopramide – (anti-sickness) up to three times a day, but only as necessary (i.e. if I feel sick)
- Prednisolone – (steroid) three a day for the next week, then two a day for the week after that, then one a day for another week, then one every other day, with/after food
- Allopurinol – (kidney protection) one a day with/after food
The nurse specialist went through all the side effects of Bendamustine with me yesterday, and reminded me of the dietary issues to be careful of (keep things clean, care with hygiene, keep away from foods that may have bacteria, boil and cool water, etc). Most people apparently tolerate Bendamustine very well, but there are the odd one or two that need extra interventions such as blood transfusions, GCSF injections, antibiotics, etc. Fatigue, risk of infection, anaemia, blood clots, nose bleeds, mouth ulcers, are all possibilities. I was given a 24-hour mobile phone number in case any of those arise, and that will enable them fast-track me in if necessary without worrying about sitting for hours waiting in the ED.
The other thing she mentioned was that after having Bendamustine if I ever need a blood transfusion I must have irradiated blood. And I was given a card to carry in my wallet to inform anyone who needs to know outside the Basingstoke hospital area. The small risk if I have a transfusion without using irradiated blood is of ‘graft-vs-host disease’, which can be fatal. Anyway, I don’t intend to have any blood transfusions outside my treatment in Basingstoke or Southampton, so it’s just something to lodge in the back of my mind just in case.
When I was talking to the nurse specialist about the side effects yesterday, I said that because I’d been told it’s normally well-tolerated I was intending to continue working as normal (but working at home a little more often). But I said that if it turned out I was getting tired or experiencing side-effects then I wouldn’t stress too much about taking a rest.
I hope I can keep with that attitude. After coming back from holiday, I returned to work to find my replacement (as project manager) had started the week before. So not only did I have to catch up on what I’d missed while I was away, but also spend a lot of time with him trying to get him up to speed. Three days later and I’ve only just got my to-do list up to date, and still have to work out how to divide up the work and get things done to catch up. So the project is pretty stressful, and will continue to be. And it will take some discipline to, if necessary, put my health first, and to make the call to let urgent work slip if I don’t feel up to doing it. The trouble is it’s a judgment call – how tired or sick do I have to feel to down tools and retire to bed?
First signs are not fantastic. Yesterday evening, after the first day of treatment, after working all afternoon, I had a headache and started feeling sick. So I took my anti-sickness medication and felt better. I don’t know why, but I seem to have a view that they only give you this medication just in case. So I get surprised when I need it! But we shall see.
So ‘Round 3’ treatment has now begun.