Wednesday 13th February… And still no Ibrutinib

So a call to the Oncology Pharmacy this morning and this afternoon confirmed that it hasn’t arrived, but I was assured that they are looking out for it and will let me know when it arrives. One problem is that while drugs from a distribution centre arrive at a set time, this comes independently (presumably by courier) so the time of arrival is not known.

So the plan for tomorrow is to go into the hospital early for a blood test (which if I’m really early, means that i will be nearer the start of the analysis queue and wait for the results to see if the blood chemistry has changed. There is also the hope that the Ibrutinab will be available for collection!

So Onwards and Upwards to another day! 🙂

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Tuesday 12th February… Post check up

Yesterday was supposed to be the first check up after starting the Ibrutinib – scheduled for last week! However it went ahead anyway so that the overall state of my blood could be monitored.

The consultation was with the Clinic Nurse Specialist, Mairead, and very though it was too! Long chats about how I was feeling physically and emotionally, and perhaps one outcome is that although I feel well in myself, I am actually quite unwell (Yes, I know that sounds like a statement of the blindingly obvious, but sometimes the blindingly obvious needs stating!). We talked about the efficacy of the Ibrutinib in my circumstances, and the reassurance is that if it wasn’t thought to be worth doing, it wouldn’t be being done! The reason for the delay was explained (it does come direct from the manufacturer on a compassionate basis, but the NHS Trust needed assurance that this would continue for as long as the drug is effective – which was confirmed last Saturday. The current forecast is sometime on Wednesday – we shall see!

The blood test results came through in stages while I was there. The blood counts were good, but the blood chemistry was less good. Calcium is still stable, but there was evidence that kidney function was less good, and also an impairment in liver function, and an increase in one of the cancer markers, LDH. (Lactose Dehydrogenase). Creatinine levels hadn’t been reported when I left, but as an interim measure, my steroid dose was increased for two days and another blood test scheduled for Thursday, by which time the Ibrutinib should have arrived. Apart from that, I had also lost a bit of weight, so I need to increase my food intake (regular meals!) and also pay more attention to my hydration to help my kidneys and liver.

So a very useful consultation, lots to think about, but overall still very positive.

(I also noticed that the drugs listed on my discharge note on January 25th have not been added to my GP repeat prescription list, so I spent an hour or so getting my fax machine working (no e mail address!!!) so I could fax a copy to them.)

So Onwards and Upwards!

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Wednesday 6th February… More frustration, but maybe some progress?

I resolved not to chase things up today, so I was pleasantly surprised to receive a call from the the CNS office apologising for not calling me back yesterday, but saying the Ibrutinib was here and ready for collection (Clinical Nurse Specialist) – but she would check that it was in the outpatient pharmacy before I came out to get it. Great excitement – until I received a call 5 minutes later to say that it wasn’t there and it wouldn’t be here until next week. I don’t know if this is because of the conditions of supply or just a bureaucratic mix up, however I have a clinic appointment next Monday (supposedly to review how I was getting on with it) so I may be able to do some digging then – not that it s likely to speed things up. So somewhat unsatisfactory.

I do have a plentiful supply of the steroids so I’ll keep going on those. I suppose it doesn’t help that I have had a bad cold for the last three days, which is making me feel a bit lethargic and wary, I don’t really want infections at the moment (although I’m not neutropenic) but I hope I will be on the mend by the weekend.

So feeling a bit disgruntled at the moment, although I have some reassurance that the situation is being monitored more closely and I hope my name is near the front of the minds of all those people involved in the procurement!

And on the plus side – more toast and marmalade! 🙂

So, rather slowly, Onwards and Upwards.


Tuesday 5th February 2019… Frustrated and impatient

As you might guess from the title, still no sign of the Ibrutinib. I waa told on Friday that it would be here on Monday. Yesterday I heard that it was probably at the oncology pharmacy (where it goes to be dispensed and then sent to the hospital pharmacy for me to collect). So today, I rang again and eventually discovered that there was some hold up at the oncology pharmacy who suggested that “I ring the consultant’s secretary to find out what was happening”. Excuse me – who should be doing that?? Still, I can’t fault the outpatient pharmacy who have done their best and kept me informed.

Anyway in the spirit of enlightened self interest, I did ring the medical secretary and got a very helpful and proactive response. It seems that there is still a hold up with the paperwork, and while I don’t know for certain, I suspect that the the delay might be in an already identified non-proactive department. Very frustrating.

Meanwhile, I have been doing a bit more research into Ibrutinib (I will post a page!) and it seems that (like several other drugs) it interacts with grapefruit and seville oranges! So it looks like

for a while. And while I like marmalade, I hope it will be a long while as it will be while I am taking the drug. Still, every cloud has a silver lining, while I’m waiting for the paperwork to be sorted, I shall be enjoying

But this situation is very frustrating. I just hope it arrives before the clinic follow-up next Monday!

Onwards and Upwards (albeit somewhat slowly at the moment)

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Friday 1st February … A slight set back!

I was hoping to have started the Ibrutinib yesterday, but when I rang the pharmacy I was told that the prescription hadn’t been written and there was a delay “with the form”. This was slightly worrying because I was getting to the end of the steroids and I needed new supplies!

However a quick call to the Clinical Nurse Specialist (Amy) established that there had been an error in the application form (this is a learning curve all round I think!) but it had been resubmitted, and a prescription for the steroids had been raised for collection today.

So quick trip to pick up a reduced does of steroids and the pharmacy say the Ibrutinib will be here on Monday.

So slightly frustrating because I really want to get started on this, but there is nothing I can do to influence the course of events, so I just have to be a patient patient and enjoy the weekend! There are still huge positives, the steroids have helped, and while they have been hugely beneficial, there are long term implications, so it’s good that it is being reduced!

I suppose I’m keen to start because there is also a small risk that I might not respond well, and I’d like the reassurance that I will, but again nothing I can do about it! At least I will know as I expect to see the lump shrink, just as I have with the steroids! Nothing like a bit of re-inforcing positive feedback.

So I think a relaxing weekend and fingers crossed for Monday when we will continue…

Onwards and Upwards!

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Tuesday 29th January…Update and good news!

I had a quietish weekend after the ‘excitement’ of the last three weeks – my parents visited which was good, and I spent some time getting the house back together after my lengthy absences.

But in reality this was just marking time for the follow up appointment scheduled for yesterday afternoon, when I was hoping to find out the direction my future treatment would take. Would it be the Ibrutinib or conventional chemo?

So it was with some trepidation that I turned up at the outpatient’s clinic to see what was happening – but prepared for either. So it was with some surprise and relief that I have been accepted for the drug on a named patient basis. I think the team at Southampton were surprised as they have not managed to get the drug on that basis, so it was purely by the efforts of the team at Guys. Maybe this will provide an ‘in’ for the Southampton team – I hope so for the sake of other patients who may be in the same position. (I will write a page about the politics and background of Ibrutinib).

So the drug has been ordered and should be here tomorrow or Thursday. It is a tablet that I take once a day at home, and go into outpatients for periodic monitoring. It is well tolerated with few side effects, so a much less unpleasant treatment plan that the alternative.

It is a drug I will keep taking for as long as it works. In relapsed patients tis is typically 2 to 3 years (but typical is a statistical type term and applies to populations, not individuals)

So this is buying more time – but in effect that is what my treatment over the last 20 years has done. This does not preclude any other chemo or treatment further down the line, and there are new treatments under development. But this gives me back some control and ability to plan things for (I hope!) the next 12 months or more (provided I respond well to it – which will be revealed on the next few weeks)

So I will keep you updated with progress. I have also released this to the wider internet for the time being – I’ll see how that goes!

A view over Southampton Hospital

So very much Onwards and Upwards! 🙂

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Saturday 26th January…And home

Yes! Made it home! It did take 4 1/2 hours for my ‘party bag’ to be delivered, which was frustrating, but at least I had ordered an evening meal so I didn’t go hungry, but I was getting a little impatient! But Katie and Chris collected me at 7pm and whisked me home where I could settle down and relax. Of the 25 days in January so far, 22 have been spent in hospital!

But I have come away with steroids for the weekend, and the supporting tablets, and a return visit to the clinic on Monday, where bloods will be checked and I hope the direction of the next stage of treatment will be determined. Katie suggests I take an overnight bag with me on Monday – I might well do that!

But nice to be home and sorting the house out. I slept fairly well (although it seems very quiet after the hospital ward!) and today I have done my washing, made some sup and baked 4 loaves of bread – powerful stuff these steroids! Getting a bit of normal life back. And I also have my parents visiting for the weekend!

So it has been quite a month so far – not at all how I expected the year to start, and it has been a bit of a roller coaster. The speed at which this developed has been a shock (no evidence of it at the November check-up) but at least it has been caught and a plan is in progress. It has been odd loosening the links with Guys and the wonderful people there, but good to be with the lovely people at Southampton, and makes treatment much easier for me.

I will continue posting as the treatment progresses, and of course if you wish to add comments, I’m always delighted to receive them! (first comment is held for moderation as an ant-spam precaution)

So – Onwards and Upwards! 🙂

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Friday 25th January … Home?

And that is the question of the day!  Will I be allowed home for the weekend, to return as an outpatient on Monday?

That will depend on the blood results, due later this morning, but meanwhile I thought I’d share a selfie taken last night…

Not looking too bad though I say it myself!

It was quite quiet yesterday afternoon after the discussions about treatment and starting the steroids. Amanda popped in to visit – I’m glad to say that I was much brighter than the night before, and that the stomach cramps have not returned. Of course if there was a partial obstruction caused by the enlarged nodes, the steroids should help relieve that at the nodes shrink back a bit.

But I slept well last night, no stomach pains and feeling good (that will be the steroids!). The drip came down just before I went to sleep so I was untethered!

Not had bloods done yet, but I have just had my morning meds which included the more steroids.

I’ll update this later as events unfold, but as always,

Onwards and Upwards!


Yes, going home this afternoon and then coming back on Monday to see how things are. Treatment will start a bit later.  If it’s Ibrutinib, that needs to be ordered, if it’s ‘conventional’ then I need a slot in the outpatient schedule, which may take a couple of days, but in either case, the steroids are providing a quick fix (think bandage on a wound, slowing things down temporarily, but not no substitute for sutures!)

O&U 🙂


Thursday 24th January… A disturbed night!

I was still in a bit of pain when I settled down, lots of gurgling but not much relief,  I had something to damp down stomach action and a bit more oromorph, which helped dull the pain, but of course did nothing to alleviate the underlying cause.

But all went reasonably well (although very broken sleep) until I woke at about 4 this morning feeling a bit sick – and promptly was 🙁 .  Nurses were great at a speedy bed change and once I settled down again, I felt much more comfortable, gripes had gone and I slept really well until 8ish this morning when the usual bloods, obs, breakfast routines started.  I’m not on a drip at the moment, so I’m not tethered to my pole and have a bit more freedom of movement!

And hot off the press, just as I was writing this, Dr Lown popped in with an update.

They are still waiting to hear whether the manufactures of Ibrutinib (Jansen) will supply the drug for me, and that decision is expected this week.  If the answer is yes, that is the route to go (it will take a couple of days to get it).

if the answer is no, then there are other options, localised radiotherapy to shrink specific nodes, but of course that is not a systemic fix.  But there are some new chemo protocols which have been developed and used with success in relapsed MCL.

And there is talk about discharging me as an inpatient and possibly starting chemo (if the Ibrutinib is not forthcoming) next Monday.  The chemo routines seem a standard 3 days every 3 weeks cycle.  Part of the decision making for that will depend on my latest calcium levels.

Meanwhile I will have another short course of steroids just to shrink them down again.

So movement and progress and therefore very much (yes, you’ve guessed 🙂 ) …

Onwards and Upwards!


Wednesday 23rd January … Impatient Inpatient

I’m beginning to get impatient now – I want to start the treatment!  I had a visit from  junior member of the team today saying that they would probably start tomorrow – nothing today apart from more fluids.

i haven’t felt too good today, stomach pains (‘gripes’) and a feeling of bloated ness or trapped wind.  It got so bad that I had to have a small amount of Oromorph this afternoon.  Trouble is that opiate pain killers slow bowel movement down which can compound the problem!

But it was good to have visitors this afternoon!  Chris (son-in-law) popped in for an hour on his way home from work, closely followed by Amanda.  Sorry I wasn’t quite as lively as normal.

I am still feeling a bit under par, so I think I’ll settle down early and hope I feel better in the morning.

Onwards and Upwards!

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