After consulting Dr Cathy Williams last Monday, this is how they want to proceed with treatment: Velcade and Dexamethasone, plus Lansoprazole and Aciclovir.
Velcade is administered intravenously, twice a week for two weeks, then one week off in a cycle of three weeks. Because it’s IV, I’ll have to go into Daycase each time. The infusion takes mere seconds, but because Velcade has a very short life – eight hours, it can only be made up by Pharmacy on the day.
They’ve warned me there may be a fair bit of waiting time, especially on the first day of each new cycle, as I will need to have a blood test and see a consultant first. The consultant then issues the prescription and it’s made up by the cyto-toxic lab. Even though it’s not chemotherapy, I guess it must be quite toxic. I’ll also have to wait for the other medication tablets which come from the regular out-patient Pharmacy. It seems that anything connected to Pharmacy involves a lot of waiting.
Velcade is a proteasome inhibitor, which may cause peripheral neuropathy – anything from mild tingling and numbness to acute pain in hands and/or feet. I’m not looking forward to that! Additional side effects may be postural hypotension, which is the medical term for dizziness when you stand up or head rush, also tiredness/fatigue and bowel problems.
Neuropathy is the main one that they’re concerned about and each time I go, they will be asking me questions to monitor if I’m being affected. If so, they’ve said they will cut the dose, but neuropathy can begin after treatment has finished. I do already have it very mildly, which they reckon was from taking Revlimid, but that only started a few months after the initial treatment was over. Postural hypotension will also monitored by checking my blood pressure sitting and standing before giving me the dose each time. Today I was fine on both counts.
Dexamethasone (aka Dex) is a steroid given to complement any chemo-type drug to help it do its job. So, on the same day as the Velcade and the following day, I’ll be back on the 10 little tablets that I used to take during the initial treatment period. If you recall, they made me very manic, creative and insomniac. Time for blog writing, I guess! And here I am after Day 1, at 8:30am, not having slept a wink all night.
They give Lansoprazole to protect my stomach from the harshness of the drugs (as previously) and Aciclovir (an anti-viral) is to prevent shingles, which is another possible side effect of Velcade.
Not only do I have a chart to keep track of what to take when, but I’ve also reinstated the use of my Medi-memo, as it’s not straightforward. Numbers-wise, there’s nothing like as many tablets as last year, but with the main drug having to be administered in Daycase, it makes me feel like a patient again – harder to forget I’m ill.
Each time, I go in for anything involving cannulation, they put a hospital wristband on me, but they never cut it off before I leave, so today I wandered off to T’ai Chi afterwards and found I was still wearing a piece of gauze taped to my hand and still wearing the wristband. How to look like an escapee!
I’ve been feeling so sad, angry and shocked about the transplant failing and having to go back into treatment, but today I was slightly calmed when I told Joy, my T’ai Chi teacher about this next treatment. She told me that when she was being treated for breast cancer over ten years ago, the first treatment hadn’t worked. So they gave her different medication which is generally used for more advanced cancer, but it was effective for her. Ten years on, Joy is now living quite well, still clear of cancer and although she only began learning T’ai Chi after the cancer treatment was over, she now teaches it… very gently and compassionately.