Archive for June, 2019

Friday 28 June… Going home!

Well, that’s the plan! I had an early ward round this morning with Dr Lown. It looks like a good response from the rituximab/ibrutinib combination and my blood chemistry is moving in the right direction, although maybe a bit more slowly than before. The theory is that the rituximab remains-sensitises the cells to the ibrutinib – the key is the combination. So I have another outpatient clinic on Monday. The midterm plan is to have rituximab every three weeks as an outpatient every three weeks for 3 or 4 cycles and then maybe move onto monthly or two monthly maintenance treatments – but that will depend on the response.

I was slightly alarmed to notice a patch of blood on my stylish NHS PJs this morning. It looks as if the injection of heparin (blood thinning drug as an alternative to compression sock to mitigate the risk of deep vein thrombosis) self injected last night bled a bit and I have a large bruise at the site! First time that has happened!

So all being well I am being discharged today once the last drip has finished, the paperwork completed and I have my party bag!

So I’m in good spirits – I was a bit down on Monday so thank you everyone who helped me pick myself up and continue Onwards and Upwards! 🙂


Thursday 27 June… feeling good!

I’m writing this from the same ward, but in bed at Southampton General Hospital (or more correctly, University Hospital Southampton!) after being admitted on Tuesday night. But I get a bit ahead of myself…

Tuesday was a bit of a low point while I mulled over things – disappointed that the ibrutinib was losing its potency (or that the disease was developing immunity) so soon) and sorting out a few things, but my spirits improved throughout the day and at around six pm I had a call from the bed manager to say that there was a bed for me and could I get in by 10pm that night? Katie (middle daughter!) kindly drove over and dropped me off at the hospital and I arrived on the ward at about 8.

Bit of paperwork, bloods and usual adminstrative stuff and I was in! By midnight I was on a drip to make sure I was properly hydrated for the treatment.

Yesterday was slow, but I saw the senior registrar in the afternoon and had a chat. The CT results were back and confirmed what we knew – several enlarged lymph nodes in my abdomen – not surprising because I have a high white cell count and the cells reside in lymph nodes! A physical exam should an enlarged node in my neck but nothing in my groin or armpits.

So I had my first dose of rituximab last night with the pre-treatment with Piriton which makes me drowsy but given to reduce the risk of an allergic reaction to the drug. (I have had rituximab before without side effects so I wasn’t too worried) and in went the drug, followed by a saline flush. I also had Raspuricade (which has been dubbed raspberryade!) which is given IV to reduce blood Uric Acid levels and mitigate against tumour lysis.

One of the reasons for having the drug as an inpatient is because of the risk of tumour lysis (which I discussed in an earlier post) but no side effects so far!

And just interrupted by a visit by the registrar – my white cell count has reduced – it was 77 on Monday, 95 yesterday but down to 73 today which is good news! The rituximab has been divided into two doses – yesterday was the smaller one given over an hour (again to reduce the risk of allergic reaction) Today I will be getting the larger dose over an hour and then I hope discharged tomorrow.

Longer term I may have the rituximab as a maintenance dose every couple of months or so, or on a three week cycle, but that decision hasn’t been made yet.

So much better news in that there is a positive response to the drug which will keep me going! It is likely to be maintenance to keep the disease under control while other options are explored. We haven’t discussed those options yet!

Meanwhile Onwards and Upwards!


Tuesday 25 June… Not so good news

Bit of a set back. I had a bit of a dizzy spell on Saturday, which although it passed did alarm me a bit, and on Sunday I thought I could feel a small lump in my abdomen. I had an appointment for a CT scan yesterday so I gave the Lymphoma Nurse Specialists a call and they suggested I pop in to see them before my CT scan. I did so and provided a blood sample before going off for the scan.

I arrived back in the clinic after the scan and discovered that my blood chemisty is out of spec with a large increase in my lymphocyte count. Interestingly the last test had also shown a slightly elevated count., so the conclusion is that the lymphoma is on the move again. Disappointing after only 4 months, but it is known that the response in relapsed Mantle Cell Lymphoma is not as good as when it is first line treatment.

Anyway, the plan is to give me a monoclonal antibody (rituximab) in conjunction with the ibrutinib. I have had rituximab before in 2004 so I know I can tolerate it. However there is a risk of an adverse reaction, so after a phone call this morning, I am likely to be admitted as an in-patient and given the drug over two days.

Not the best of news as I had plans for various trips away, some of which will ned to be cancelled (no flying), but it is what it is, so I hope we continue Onwards and Upwards and this little setback.


Monday 17 June… A few days away in France!

I have returned from a few days away in France, helping Mark doing some work on his house. You may remember that I was there a few weeks ago, this was a trip to complete one job and carry out a couple more. The first one was putting up more insulated plasterboard on the sloping roof (this room will eventually be the main bedroom.)

That was followed by some work to run central heating pipes from the cellar to the new room…  Drilling te holes through the tiles, concrete and wood into the cellar was reasonably straightforward and quick.  “Ah” we thought, “this is going well!” Alas it was not to be as the next photo shows

Where drilling through the ceiling was not straightforward, not helped by the failure of two power tools! And that was just the start as we drilled into a waste pipe in the up stairs bathroom  –  which  slowed  us  down  a  bit! However we did get the pipes run in – they just need to be boxed in.

We did a bit of slab laying on the last day, and some work in the garden with the ride on lawnmower and the grass cutter on the tractor.

Healthwise, all seems to be going well, I have an eye appointment at Southampton (my eyes have been better recently – which could be the Ibrutinib as it can be used to control GVHD, or I might be being a bit more careful in applying the various eyedrops etc. Next week I have my CT scan, and I should get the results at my next check up in July. I haven’t heard anything about my recent blood test, so I am taking that as good news!

Onwards and upwards!

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Sunday 9th June… some sun at last!

It was certainly wet wet wet for the last couple of days, and before that it was quite windy, which was a pity as I was supposed to be diving on an old Mulberry Harbour as part of the D-Day activities. Sadly it was too windy to launch the boat.

Other than that, little else to report. It is a month since my last check up, but the team don’t need to see me, but just require a blood test. I’m quite busy this week (more later!) so I had the blood test last Wednesday and picked up my next month’s supply of Ibrutinib. No comments from the hospital, so I assume that the results are all OK. 🙂

And that’s it for this post! Off the enjoy the sun – Onwards and Upwards!

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