31/05/20

My good luck with side-effects appears to still be in working order. Nothing unpleasant (as yet) from the new pills. The only thing is that the ankle/foot oedema caused by the dex is showing a little, but not as bad as last time. I'm only on half the dose I was on before, and only one week so far, but I think I'll ask the GP for some more diuretics so I can get on top of it before it gets to the point where I can 't get shoes on again...

We should get the last set of  blood test results in tomorrow.

28/05/20 (3)

It really is rather remarkable. I've been up and down the stairs twice, alternate legs, without using the handrail. A couple of days ago it was slow and tentative, right leg leading all the time, and hanging on to the handrail. And I can get out of a chair without having to push myself up from the arms. Just like old times. Whether it's the dex or something else, it's very welcome. I've felt like a wreck since that hip/back problem started a few weeks ago.

28/05/20 (2)

No unpleasant side-effects so far, and the hints of constipation have not developed.One surprising thing - just possibly a positive side-effect - concerns the problem I've had around the back of my left hip for several weeks which has made getting out of a chair rather difficult.

Yesterday - the first day of steroids - it improved substantially and that has continued today. I'm standing up from sitting very much better.

Today we went out for a drive (shades of Dominic Cummings...) and ended up with a short walk/roll around Writtle Green. This is where the Writtle Jazz Festival should have been happening this year...

We've moved to a new version of "Blogger", the software that lies behind Blogspot blogs. There's a bug because clicking on an image posted using the new Blogger no longer produces a larger version of the image. If that worked properly you would be able to see that approaches to social distancing vary considerably...

UPDATE: It does work properly now, because I've gone back to the "Legacy" version of Blogger. I hope they'll have fixed that bug by the time we're forced onto the new "improved" version.

28/05/20

The dex sleeplessness is back. Went to bed about 02:15 as usual for me, not feeling anything out of the ordinary. Then woke up 03:15 with the full effect. As before, when under the influence of dex sleeplessness you know there's just no point resisting it. So I'm in my study at the computer and I'll stay here until I feel like trying again. The snag now is that I have to be up at 08:15 for the Bonefos pill and an hour of not eating/drinking before breakfast at 09:30. If I have sleep to catch up, I'll just have to do it later in the day or tomorrow.

Otherwise, no effects yet from the new pills although there are hints that the constipation issue may be returning. Depending on how tomorrow goes, I may be back on the Senna, Fybogel, Laxido routines again. And on that happy note, it's back to the Big Bang Theory on Netflix. I'm up to series 8 episode 1. Four series or 120 episodes to go, and with luck I'll be off the dex indefinitely by the time it ends - 112 days of the new chemo, and the dex effect shouldn't last for more than a couple of days each week. I hope.

27/05/20

I've taken the first two Bonefos tablets. They come with a line across the middle to break them into two to "make them easier to swallow". I'm OK with large pills so took the first one whole and had a very hard time getting it to go down despite using a lot of water. So I broke the second one in half and took one at a time. Very much easier, and lesson learned for tomorrow.

As for side-effects, one lady on the Myeloma Facebook group said she threw up 20 minutes after taking her first one. Well, I'm doing better than that. No sign of any trouble yet, four and a half hours later.

I also took 20mg of dex this morning, so it could be back to long sleepless dex nights again. OTOH that's it for the week (no dex tomorrow, unlike last time) so maybe the effect will be less. I think I'm repeating myself there, which I hope doesn't indicate memory loss...

The first Lenalidomide/Revlamid will be just before midnight. Anything might happen, and if you believe the side-effects list in the patient leaflet, probably will. We shall see.

27/05/20

Yesterday was another very hot day, and it was a delight to sit by the dragonfly pond at the end of the garden and watch the first of this year's damsels and dragons doing their thing. Early signs are that we're going to get a better variety and numbers than we did last year. That was very good for my state of mind, which is just as well considering what came later...

I arrived at Springfield right on time for my appointment. The doors are automatic,and I pushed the lift buttons with my Safekey (a brass gadget you can use to push buttons, work door handles, etc. without touching them) and rang the bell. One of the nurses appeared and sent me off to the waiting room, where there were two others already. The chairs were arranged so that we were just about the regulation two metres apart, but no more. I had a face-mask on, but neither of the other two did.

A pharmacist arrived with my bag of new pills and gave me the usual talk about them then took them through to the chemo nurses. After another wait, one of the nurses called me through to the treatment room. The first thing she asked me was "Are you on steroids?" I said "No, but I should be from tomorrow." They had checked the contents of the bag and found no Dexamethasone in there. Full marks for the chemo nurses, and rather less than that for the pharmacists...

Cue a couple of phone calls, until the Pharmacy admitted an error. I was asked to go over the road to the main building after my appointment to collect the necessary Dex from the Pharmacy but I objected saying I'm supposed to be "shielding" and didn't want to go into the main building unless absolutely necessary. My nurse said "OK, no problem, I'll go and get them." Which she did, so another set of full marks to the cancer side of the road.

Then we did the obs and bloods, and I made my point about switching from the well-tolerated Zometa drip onto the new oral Bonefos - pointing out that if "minimising time in hospital" was really critical, I'd already been there for the best part of an hour and a half - plenty of time for bloods and a Zometa drip - and nobody was going into panic mode about my having been there unacceptably long...

She said she agreed completely, I had a perfectly valid point etc. , and suggested staying with the Bonefos (sodium clodronate) for the first four-week cycle and reviewing after that, which is the approach I had already decided on. With any luck, by that time the pressure to go to oral bisphosphonates will have dropped quite a bit - I already know of several hospitals (including Addenbrookes in Cambridge) that have already returned to Zometa.

The Bonefos pills require eating/drinking nothing but water for two hours before taking them, and the same for another hour afterwards - because effective absorption requires an empty stomach. I'm relieved that I have to take them only in the morning, which means little more than delaying morning tea until with breakfast rather than before it. Having to organise that around lunch, tea, and dinner would have forced us into a rather more rigid timetable than we're used to.

We start in the morning. Bonefos, Dex, and Revlemid/Lenalidomide. The Dex is 20mg for one day only rather than two as I had before, so I hope its impact on sleep, constipation, ankle oedema etc. will be less  than before. Not to mention appetite and weight gain...

26/05/20

Again, nothing significant to report. Springfield 'phoned to change my appointment later today from 10:30 to 15:00 because they're awaiting a delivery of Lenalidomide. And that's as much excitement as there's been for the last few days. I should have more to say later after the appointment.