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.

22/05/20 (2)

Heard from Springfield today - my new prescription will be available Tuesday afternoon (26th) when I go in for the next set of bloods. So we start on Wednesday.

If things go as usual, I'll have to wait while a pharmacist brings the stuff over from the main building and goes through all the pills, how I should take them, side effects, etc. That'll take nearly as long as a Zometa drip would, and will bring me into prolonged close (well, 2m) contact with someone from the main hospital building. And yet I can't have Zometa once a month because "it's all about minimising the time in the hospital" as someone from MyelomUK told me when I phoned them about this. Doesn't make a whole lot of sense to me.

22/05/20

Nothing much yesterday or today so far (01:17) apart from Sue's birthday yesterday. The weather was good and all the plans worked out well.

I'm now pretty much reconciled to going from intravenous Zometa to oral sodium clodronate, despite the low and unpredictable absorption, the possible new side effects, and the need for a rather more disciplined approach to meal timings. Despite that I've heard of three hospitals (Addenbrookes in Cambridge included) which are either returning to Zometa or never stopped it. I think my best bet is to go with the new pills for a few weeks until - I hope - enough places have gone back to Zometa drips that Springfield will be forced to follow. Or perhaps a side-effect will be bad enough to produce a change of mind...

Yesterday afternoon we intended a walk along the Essex Way near us (mainly because it's well-shaded and the temperature was above 80F). When I got Victor the all-terrain Veloped (walker) out of the garage, he had a flat tyre. Same one that got a puncture a couple of weeks ago. So I ordered two more 14" inner tubes and a 12" one (for Walter the other walker, just in case of need). Later today I'll investigate further, and may have to put the repaired tube from last time in as a temporary measure. Sometimes I regret the passing of the days when I could go out for a walk with just a stick, or even nothing at all...

Otherwise, I'm just waiting for delivery of the new pills (Lenalidomide, Dexamethasone, and Sodium Clodronate) so we can get the new regime under way.

20/05/20

I've been learning a bit more about the new oral bisphosphonate pills I'll be starting soon. They are necessary to counteract the bone-destroying effect of steroids like dex at high doses.

They are going to make a mess of our morning routines. You have to take the first one of the day first thing in the morning with plenty of water, and then you can't eat or drink anything except  more  water for an hour. So there goes my early morning cup of tea! I'll have to have it with breakfast rather than before. It's likely to mean even later breakfasts than usual for us, and Sue won't be too happy about that. I could try to compensate by getting to bed half an hour earlier (against all my natural instincts)  but with the prospect of more dex-sleepless nights to come, that may be difficult. OTOH, the very late dex-induced nights did get better as the four cycles of DVT went along, so maybe it won't be as hard to cope with this time.

I'm advised by my rheumatological friend (who knows a thing or three about this class of drugs) that in order to avoid the common side-effects of dyspepsia and sickness it's best to spend the hour after taking the pill staying still sitting or standing. Well, apart from brushing teeth, washing face, shaving and spending a few contemplative minutes on the throne, I expect to be at the computer taking my temperature, checking the news sites, my email, Facebook, etc. for the rest of the hour. That's pretty much what I usually do, but not for a full hour. I'm not yet sure whether I should take the pill before tooth-brushing etc. or whether to get that "activity" out of the way first, which would make the gap between waking up and breakfast ten minutes or so longer.

 I don't yet know whether I'll have to take a second pill later in the day (but I expect so). That will mean no food or drink apart from water for two hours before and one hour afterwards. Possible, but it will impose a bit more structure on the day than we're used to.

This is all a lot more complicated than just turning up at the Springfield Oncology Centre once every 28 days and sitting in the treatment area for the best part of an hour while the Zometa drip goes in. Dr. Ch seems to think it's worth it for the reduced hospital time and associated COVID-19 risk and I suppose I have to take his advice. If it were up to me I'd stick with the Zometa perfusions, but there's no point having a specialist if you don't respect his advice...

19/05/20

In order to keep hospital visits to a minimum, my haematologist suggests swapping the monthly Zometa drips for an oral bisphosphonate (sodium clodronate + calcium tablets). I understand from the Facebook Myeloma group that this used to be the standard before intravenous Zometa came along with the promise of fewer side-effects. I asked about people's experience with it and most people seem to have been fine but one or two reported quite bad reactions including somebody who threw up within 20 minutes of her first dose. But considering the reports of side-effects from other drugs that I've tolerated with very little trouble, I'm not too concerned about that. The worst thing, if some of what I've read online is to be believed, is that I shall have to forego my morning cup of tea, as instructions are to take the pill with a glass of water first thing in the morning and then to eat or drink nothing apart from more water) for an hour. It usually takes me about that long to wake up, brush teeth, wash, shave, check Facebook and the online news sites, and etc.. before breakfast anyway so no big deal. I'll just have to postpone tea until with breakfast rather than before it. Everything I've read suggests this is a  daily pill (or two) rather than the once-a-month Zometa.

18/05/20

Had a good walk/roll yesterday on the edge of the neighbouring village of Leaden Roding. It included going round the edge of the cricket ground - it's the nearest one to us but not, perhaps, in the best of condition:

If you open up the full version of the image you can see the old thatched pavilion next to the clubhouse, and on the left of that the collapsed metalwork of the nets, which need a complete replacement. The roped-off square is just about visible if you know what you're looking for.

Of course no village cricket is being played as yet this year (if at all) because of the infernal virus.

After that we explored a new trail and found some splendid woodland we didn't know about before. The paths are flat and make for easy travel with the cross-country walker which also coped well with the one tricky  down-and-up bit to cross a ditch that we needed to do to get back to the road we started from.

When we got home I decided it was time to check the tyre pressures on both Trionic walkers, as the one with the new tube seemed by finger pressure to be a little lower than its partner. So I did all eight wheels (that is the correct total for a four-wheeled walker and a three-wheeled one, don't ask me to explain) and had some trouble getting the end bit from either of my pumps to fit the valves and stay on without leaking. That's because these small wheels don't allow a lot of room between the valve and the hub to get a straight-on thingy (not sure what you call the bit on the end) to fit securely onto the valve. The non cross-country walker with the 12" wheels has valve stems angled outwards, presumably to avoid this problem, but there's a kind of sheath around the valve stem that doesn't leave enough exposed thread for any of my connectors (that's the word!) to get a firm enough grip. So I've been on to Amazon to find a 90 degree solution and also for a set of steel tyre levers as the plastic ones I had were not up to the job with these small tyres.

So there we are. I'm trying to get on with life and stay sane, even if that does mean breaking strict interpretation of the lockdown rules for the extremely vulnerable. I'm using - I hope - good judgement of the risks, and thinking more about the infernal virus than about my cancer. Even if Dr.Chowdhury's plans mean a return to Dex nights and 5am blog posts...

16/05/20

Thanks to a copy of my consultant's letter to my GP, we now have a clearer idea of the plan for the next stage. Transplant is postponed indefinitely subject to COVID-19, relapse, and - I suppose - my age and general health. This is the relevant part of the letter:

13/05/20

Something interesting from one of the Facebook Myeloma groups:

Apparently UCLH London have discovered that myeloma patients who are on lenalidomide maintenance who have caught Covid 19 have recovered without needing intensive therapy. Those of us who are on lenalidomide (revlimid) maintenance have so far been advised to stop if we get covid symptoms, may be worth checking this out with our consultants.

I am checking it out with my consultant. No hint of number of patients involved, or of any other statistical or methofological rigour, of course, but interesting as I'll be going onto Lenalidomide soon.

11/05/20

First, the good news - the results of last Tuesday's blood tests show the paraproteins as still undetectable, and everything else is normal or not too far off.

The nearly as good news - the left hip problem that has been bothering me for a few weeks has moved on a stage. It was OK first thing this morning, got a bit worse, and then while I was starting to make the morning cappuccinos I had a vicious sharp stab of pain in the area, followed immediately by a collapse of that side and another slightly lesser stab (and a certain amount of bad language...) It felt very much like the groin pain the day this all started - the kind that tells you something bad has happened deep inside. Except that whatever happened seems to have been good - I've had no more trouble with it today. For weeks I haven't been able to bend as far to the left as I can to the right, but today that's evened out completely. I'm not celebrating too much, because it remains to be seen how it is tomorrow morning.

I finally had the 'phone consultation with haematologist Dr.Chowdhury. We decided not to do any further investigation of the hip problem at this stage, and also to put off any thought of going ahead with transplant for the foreseeable future. He also agreed that with all the new treatments coming along, there may be a case in a year or so's time for changing direction and avoiding transplant altogether. Despite all the effort (and taxi fares) that went into stem cell harvesting etc. at The London Clinic I'm actually a little relieved to think that the transplant may never happen. There are risks, as well as the very long recovery period. I'll still go through with it if it seems to be the best way to go but TBH I'd be happy to avoid it given a decent alternative.

In the meantime, rather than waiting for the paraproteins to start creeping up and going back to a couple more cycles of DVT chemo (more than six cycles are not recommended, and I've already done four), his advice is to go onto a "maintenance" treatment in the hope of keeping the PPs down and the myeloma inactive for as long as possible. That means low doses of Lenalidomide (aka Revlimid) and the familiar steroid Dexamethasone. He says he has one patient who's been on that for seven and a half years, and it's what I would have been on post-transplant. There's some paperwork to get through because Lenalidomide is a variant of Thalidomide, manufactured by the same people, and carries much the same risk for pregnant women. It's also not available on the NHS (except for trials), and the fact that you can only get it privately in the UK is one of the main reasons why we decided to go private. That may have been a wiser decision than we thought at the time.

So, after a long period of "limbo", things are starting to move again. I should be starting the maintenance treatment next week, and then with a new drug and combination there's a whole world of potential side-effects that I may be hit by...

10/05/20

At last, something to write about. Dr.Ch sent me an article from The Lancet Haematology "Management of patients with multiple myeloma during the COVID-19 pandemic". The two main points are:

(1) to postpone transplant for up to six cycles of chemo, which for me means two more i.e. ten weeks (late July) if we went straight into Cycle Five next week. Or longer if we can hold off the start, and the blood results due tomorrow will help decide that. Patients should be tested for SARS-CoV-2 infection before transplant (surprise!)  My feeling is still that if at all possible we should delay transplant until we're well out of the pandemic, and that could be a year or more. On that basis, I might be into second line chemo at least .

(2) to reduce steroid dosage because of negative effects established during earlier coronavirus outbreaks

There's also a suggestion that Velcade (Bortezomib) should be switched from subcutaneous injection to oral so as to reduce hospital visits. However, a quick search found nothing beyond a mention of a "mid-stage study" of an oral form of Bortezomib so I doubt that it's available. The other possibility mentioned is self-injection at home which I'd be happy (well, prepared) to do, but if the routine at Springfield is anything to go by, the injection has to be prepared within a very short time of the injection so I'm not sure how that would work at home.

09/05/20

Phone consultation with Dr.Chowdhury now put off until Monday.

Yesterday afternoon Sue and I mowed the grass on our big back lawn - first time I've used a lawnmower for well over a year. The big one is self-propelled with a push-button start and a lithium battery. I haven't been able to cope with a pull-start since I broke my left shoulder back in 2017. It has no manual choke (automatic, I presume) and no primer bulb either and I was a bit concerned about stale petrol still in the tank, but I topped it up with fresh(ish) fuel and it started with a cloud of blue smoke on the fourth attempt. Not bad, under the circumstances.

The problem with this mower is that it's either stopped or full speed ahead - almost impossible to find and hold a speed somewhere in between. Full speed is a little too fast for me now, so I have trouble keeping up and if I drag behind that lifts the front wheels so the blade doesn't cut properly.

Anyway, that got me down to the dragonfly pond and pleased to see a few dragons and damsels about this early in the year. Now to bed, and I hope I wake up without too much damage from the afternoon's efforts.

07/05/20

I had hoped to report on the promised 'phone consultation with my haematologist, but unfortunately it didn't happen as promised. Try again tomorrow, I suppose.

Good news about the near neighbour with suspected COVID-19 - his test was negative and I hear he's feeling better. Can't help wondering exactly what it was that sent his temperature up above 40C in quick time.

06/05/20

Went to Springfield Hospital yesterday for my three-weekly bloods to be taken - results expected Friday. All nurses I saw dealing with patients were wearing face masks (as I was) but other staff weren't using any PPE.

Had a reply from Dr.Ch to my email of a few days ago - he suggests a 'phone consultation later today or tomorrow. Of course the three problems (left hip / low back, left knee, stiff neck) have all improved a bit. But I remember the two lesions / pathological fractures I believe I had before the big left hip lesion appeared back at the beginning. One in upper back, the other in a posterior rib (I thought it was the shoulder-blade). They were both bad for two or three weeks and then went away by themselves...

It's almost a relief to be able to think about myeloma again instead of COVID-19. And on that point, a near neighbour has developed a high temperature (40.3 C is the last figure I've heard) which came on very quickly. He's getting a virus test early this morning (that's early by normal standards, not mine). Fingers crossed for a negative result - it would be a little too close for comfort otherwise. Hope he's OK.

04/05/20

01:54, and that ache in my toe has gone away. Fingers crossed for later in the morning...

03/05/20

Earlier today I sent Dr.Chowdhury an email  because a few things have been going on that I'm starting to get concerned about. Here's the main part of the message:

For a few weeks now I’ve been having trouble with my left knee and left lower back. With the PPs undetectable and the myeloma presumably inactive it seems unlikely that these problems could indicate new bone lesions developing but…

Left knee - it's the joint I have for years thought likely to be first in line for replacement if I ever get that far. There is an erratic tender spot (sometimes I can feel it, sometimes I can’t) if I run a finger down the inner edge of the patella, and another tender spot and slight swollen bump in the hamstring more or less below that. Range of movement is a little less than normal (and than the other leg) and the knee sometimes gives way while walking. I haven’t gone up or down stairs without at least one hand on a rail since this started.

Left lower back - just stiff and sore. Not too far away from that big left hip lesion that started all this off. As for the knee it feels like a muscular / soft tissue problem rather than anything in the bone, whereas with the hip lesion I knew that it was something wrong inside the joint. Anyway, putting this together with the bad knee makes getting out of a chair difficult and slow.

Generally these two things are worse in the morning and to some extent I can “walk them off” during the day (but not the getting up from sitting thing).

A stiff neck (again mainly left side) - to some extent explained by having to do a job or two around the house above head level - something I’ve never found easy. That’s improving now but more slowly than I think it should.

Under normal (and pre-myeloma) circumstances I’d have taken these problems to an osteopath, but that’s impossible under lockdown. My instinct is that they are all muscular / soft tissue and not myeloma-related but I’m starting to wonder whether they should be checked out just in case. What are your thoughts? 

Any "checking out" would mean some sort of imaging and that would require at least one extra hospital visit with the associated coronavirus risk - something to be avoided if possible. We'll see what Dr.Ch has to say about it.

On top of all that, my left big toe (the one that tends to get an involuted nail, although that's OK at the moment) has developed a persistent dull ache that seems to be right in the middle. No external tenderness or obvious inflammation. I'm just hoping that will go away by itself, can't believe it's anything to do with the myeloma.

01/05/20

Average number of posts per month September 2019 to March 2020: 42 (there is no particular significance to this also being the answer to the ultimate question about life, the universe, and everything  - as far as I know...)
Number of posts last month April 2020: 20. Fewer than half. I think that says it all about the current state of limbo where very little is happening, and most of what there is to write about is COVID-90 rather than Myeloma.