MCL and Me

The main drug regime I am on is called HyperCVAD ( pronounced hyper-see-vad). The hyper bit relates to the intensity and the fact multiple drugs are given ( hyperfractionated ) . The CVAD relates to the drugs themselves. Upto today I'd had the C for cyclophosphamide and the D for dexamethasone. This morning I was given the V for vincristine ( just 2mg in 100ml saline over 10 mins) Now I am on 55mg of doxorubicin in a whole litre of saline over 24 hours. This is the A in CVAD. How so? Well the proprietary name for the drug when this regime was first trialled was Adriamycin but it is now known by the generic name of Doxorubicin So really I am on HyperCVDD but how would you pronounce that? The good news is that when I have finished 2 days of the doxorubicin I can go home so this should be Wednesday if everything goes to plan. I had a nice nap yesterday afternoon and Mom and Dad came to see me in the evening. Last night was the usual really, about 4-5 hours solid sleep with some dozing...

My mom was asking if I was getting bored or lonely while being in hospital and it hasn't been too bad at all. Not least because there is always something going on. I kept a little diary for Friday here's how it went: 06:00 Blood pressure and temperature taken (obs) 06:45 Cyclophospamide put on drip 07:15 Drinks trolley 08:15 Breakfast and drinks trolley again 09:00 Drugs trolley (allopurinol + lansoprazole) 09:15 Bed linen changed 09:45 Newspaper trolley 10:15 Obs 10:30 Doctor's round 11:00 Cyclophosphamide drip ends and central line flushed. 12:00 Cleaners 12:15 Lunch and drinks trolley 13:30 Drugs trolley ( fluconazole + dexamethasone ) 14:00 Obs ( and visiting time ) 14:30 Drinks trolley 16:00 Visiting ends 17:30 Drinks trolley 17:45 Dinner 18:15 Obs 18:30 Visiting time ( Mom + Dad ) 19:00 Next batch of cyclophosphamide fitted 19:30 Gareth arrives 20:30 Visiting ends 21:00 Drinks trolley 22:0...

I mentioned yesterday that I had a bit of fluid retention and you may be wondering how they monitor this. Well it's a pretty basic equation measure what fluids you have taken in and what comes out. Input is a matter of keeping track of how many jugs of water and cups of tea you have drunk plus any fluids in your drip (more of which anon). To get the output figure everytime you go for a wee you have to do it in a bottle, put your name on it and leave it in the bathroom, the nurses can then weigh the bottles and convert that to a volume in litres. The bottles are actually those cardboard vases so the bathroom isn't quite 'ten green bottles hanging on the wall' My fluid balance was +3litres at midnight Saturday and this is a bit high. I mentioned my slight breathless to the doctor and he listened to my chest and checked my ankles this was all fine but he wanted to shift that fluid balance as a precaution. I was weeing well ( 4.7 litres ) the problem was I had drunk a bit t...

The drug regime is certainly picking up. Starting yesterday at 07:00 I was given 660mg of cyclophosphamide in 500ml of saline infused over three hours in my drip. Then another dose of the same at 19:00 This is a powerful cytotoxin ( literal translation cell killer ) to attack the cancer cells. This along with the dexamethasone steroids are two of the drugs to attack the cancer. The steroids are pretty impressive in how quick they work. 24 hours after 1 dose the largish lump at the side of my ear that you could feel is pea sized instead of walnut sized. To counteract the side effects of these drugs I am now taking:- Allopurinol - one tablet a day to prevent gout caused by vincristine I'll be taking shortly Lansoprazole - one tablet a day to reduce acid reflux and protect stomach because lining is damaged by the cyclophosphamide Fluconazole - two tablets a day to prevent fungal infections in the mouth while my immune system is being suppressed Chlorhexadine Gluconate - mouthwash fou...

I had a visit from Gareth, Andy and Paul in the afternoon and from Mom, Dad and Gareth in the evening yesterday. Dad had popped round to my flat to pick up a few things for me and he spoke to my downstairs neighbours to let them know what was going on. They said they thought something might be up and wished me all the best. I must drop them a note to explain the details of being in and out of hospitals or at mom and dad's now and then. I was planning to let them know in the gap between having my line fitted and coming in for my first cycle of chemo, but of course there was no gap. At about 19:15 last night my central line was connected to a pump on a drip stand to be able to give meds intravenously. I was then given 1 litre of saline to infuse over 10 hours. This just to fully hydrate me ready for the cytotoxins that will start attacking my lymphoma cells. It also gave me a chance to practise walking round with a drip stand before they connect anything expensive. There is a definit...

Just a quickie for the techno geeks amongst you. Having seen the style this bedside terminal uses to display messages I figured it was using X windows and Linux. Sure enough the system is called Medivista by a company called Lincor and it runs Linux. How apt for me. Just google for medivista and Lincor if you want to know more.

Had my first visitors last night, first Mom and Dad then Gareth. It was great to see them though overall I kept myself quite busy during the day and can chat to fellow patients. I didn't start my chemo yesterday after all. The drug i was going to have called retuximab is a new fangled mono-clonal antibody and because of the cost they need to do 'named patient' funding i.e. only apply for drug once patient is definitely ready. having been snuck on the ward as it were , the docs tried their best to rush the paperwork through but did not succeed. I wonder if some accountant wants to get it in the new budget that starts in April? The retuximab is one part of my treatment the other part is the more traditional hyperCVAD so they will start that today. the doctors don't seem too concerned about the order of the treatments. I've just had my first drug, a tablet that is a preventative to gout that could be caused by the hyperCvad. It's called allopurinol , not sure of ...