Wednesday 16 July… A waiting game

Just realised that I havent posted for a few days. Its been a bit of a torrid week. I had the rituximab as an outpatient last week, so I was hoping for a significant reduction in my white cell count when I went to clinic on Monday.

Alas, that was not the case, in fact they had risen and the conclusion is that the combination isn’t working.
So the plan is to have a short course of more conventional chemo as an inpatient over three days. I was hoping to be admitted yesterday, but there were no beds available, so I am hoping that I will be admitted today.

I was supposed to be going away this week-end for an annual reunion with my university flat mates and friends, but that is on hold at the moment. However I did have a superb evening at a Soul/Motown music festival last Friday – I found the energy for about an hour on the dance floor! 🙂

But I havent been sleeping well, with sundry aches and pains, so I hope that treatment will start soon.

Onwards and Upwards? I hope so! 🙂

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Tuesday 8 July… Clinic!

It has been quite a rollercoaster of a week, from last Mondays decision to start more conventional chemotherapy, to the change on Tuesday to continue with the rituximab, followed by the admission and administration. I had a bit of an anxious weekend – not exactly feeling unwell, but not exactly feeling on top form – I suspect partly by the electrolyte imbalance. I had occasional heart pain, which is probably due to potassium deficiency. I did go home with potassium supplements which seems to have solved that issue!

Im also slightly down on magnesium and calcium, but it is though that they will resolve naturally.

So it was with some anxiety that I attended clinic yesterday, hoping that the reduction in white cell count would have continued. It was with a sinking heart that I heard that they had gone up, quickly followed by an explanation that it was possibly because that the drugs were flushing the white cells out of the lymph nodes into the blood stream, where hopefully they die off. The good news is that my other blood counts and parameters are returning to normal ranges. This explanation accounts for the spike in white cells when I stated the ibrutinib.

So the plan is to have more rituximab this week, but this time as an outpatient (as I didn’t have an adverse reaction) and another CT scan to see what is happening with the lymph nodes.

Time for a quick thank you to middle daughter Katie who took me to, and collected me from hospital last week, and all my other very special friends who have supported me through one or two dark moments, and accompanied me to the clinic yesterday. It means a lot and I am very grateful.

So with the current plan in place (and others in the background, I am continuing Onwards and Upwards!

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Saturday 6 July… Home?

And you might correctly deduce that I wasn’t released yesterday. It seems that my electrolyte balance isn’t correct! I had some magnesium in yesterday’s fluids, and both last night and this morning I had a potassium tablet (and to do my bit, I had a banana with my breakfast!

Yesterday’s blood results did show a reduction in my white cell count – I haven’t had today’s yet, but I hope they will show a continuing downwards trend.

It looks to be another sunny day outside – I am getting to be a impatient inpatient again!

Still, hopefully Onwards and Upwards!

Late update – white cell count down again, just waiting for confirmation that my electrolyte balance is OK.

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Thursday 4 July… treatment starts!

Mixed day today I woke up in the night with a numb mouth (almost like a dental injection effect) and again when I woke. Although it soon wore off, I mentioned it to the registrar who launched into a stroke/TIA (transient ischaemic attack – medical term for a stroke!) assessment. Happily it should nothing untoward and it was thought that it might have been a consequence of the high white cell count (WCC). It seems that my WCC is still increasing which isn’t very good news. I had bloods taken again this morning before the rituximab.

Anyway, the rituximab was started this afternoon, again a half dose to mitigate against Tumour Lysis and preceded by Piriton (which promptly made me drowsy!)

One very welcome visitor this evening, but just as I thought I would be drip free this evening, a bag of saline with added magnesium turned up. I had more bloods taken tonight so I hope they will at least show a slow down in the rate of increase, and at best a reversal.

I get the second half of the drug tomorrow and I hope I will then be able to go home!

So cautiously onwards and I hope Upwards! 🙂

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Wednesday 3 July… All change!

And about half an hour after I wrote yesterday’s post, I had a call from the Clinical Nurse Specialist (CNS) – this time from Amy.

The muli-discipinary team had discussed my case and come to the conclusion that the spike was caused by the rituximab and so rather than proceed with the vinblastine, I should have more rituximab, again as an in-patient so my blood counts can be closely monitored.

So this morning I had a call from the bed manager and Katie took me in – almost home from home 🙂

So feeling more optimistic and hoping that we continue Onwards and Upwards.

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Tuesday 2 July… Rollercoaster time

Well, an emotional roller coaster! I had a quiet weekend – still a bit shocked and upset that the ibrutinib had stopped working after on 4 months. I suppose I should have remembered that studies have shown that it is less effective in relapsed cases. I slept badly over the weekend but I was hopeful that the combination of rituximab and ibrutinib would continue to be effective, so I was looking forward to having the blood test and results yesterday.

Unfortunately the blood resuts showed that my white cell count had continued to increase – from 75 last Monday to over 170 yesterday. The normal range is around 11. There are two possible explanations, one is that the rituximab has caused a brief spike in the count (as the ibrutinib did initially. The other less palatable reason is that the combination isn’t working and the lymphoma is progressing. The is unfortunately no way to tell without waiting, but that really isn’t an option with a count that high, so the plan is to give a short course of conventional chemo followed by another maintenance drug that I haven’t had before.

So I left the hospital in a very mixed emotional state – not in a good place. I did go out that evening, which helped, but I slept very badly with all sorts of dark thoughts going round my brain in the small hours.

However, things always seem better in the morning and I started to think tings through more logically. I think emotionally I waa feat=ring the worst, but logically, while things could be better, this is not a terminal diagnosis. The prognosis might not be the best, but there is an active treatment plan in place.

The earlier today I had a call from the nurse specialists to say that I would be having my first session tomorrow. The drug is vinblastine – a gentler form of vincristine – which I have had before. The side effects are supposed to be minimal so I shouldn’t feel too unwell. It is a group of drugs called the vinc alkaloids, originally synthesised from the Madagascan Periwinkle!

So while I might be down, I’m not out. Onwards and upwards doesn’t seem to quite fit the mood – but certainly onwards, and I hope upwards.

I must record my thanks to various friends who helped me through this rather dark time. You know who you are!

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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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