Tuesday 9th April… Check Up time!

I had my monthly check up yesterday and I’m delighted to say that all seems to be going well! I went in fairly early in the morning for my blood test, well ahaed of my appointment in afternoon so they would be ready.

I saw Dr Lown in the afternoon who confirmed that my blood counts were all good, as was my blood chemistry, with the exception od creatinine levels which have crept up a bit – the answer is to drink mire water as I have backslid a bit on that.

We reviewed my supporting medication and decided that I no longer need the Lansoprozole or Allopurinol, which simplifies my drug taking regime. I had my new prescription for the all-important Ibrutinib (two months worth!) which I will pick up tomorrow.

We discussed the need for a PET or CT scan and decided that it was unnecessary as it would add nothing to the clinical picture at the moment (all the lumps have shrunk, and no sinister abnormalities in my blood count or chemistry, so no further action, apart from a check up in a months’s time! He did remark that when Ibrutinib works, it works well, and he wants to present my case at a meeting with the drug manufacturer in the next few weeks.

So very much Onwards and Upwards!

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Friday 29th March… All going well!

I’ve had a couple of emails remarking on the fact that I haven’t updated the blog recently and was I OK? Actually all is going very well and there hasn’t really been much to say! I am taking my four tablets of Ibrutinib every day (along with one or two supporting medicines) and just getting on with life! I’m not aware of any side effects (I have read the patient leaflet very carefully!) and all seems well. My weight is increasing slowly and all is good. I think the fact that I am now only seen monthly is an indication that there are no immediate concerns about the drug.

I did have a sore mouth when I had my last check-up. Normally I take fluconazole to sort out that, but it is one of the drugs that interacts with Ibrutinib, so I was prescribed Nystatin in its place, which quickly solved the problem. This has helped eating, and has made swallowing the tablets and capsules much easier! I have also come off the steroids, and while there were a useful short term fix, high doses over prolonged periods do have side effects. The one that was starting to affect me was thinning of the skin, causing painful cracks on my finger tips, but they are starting to heal after three steroid free weeks.

It was my birthday last week and I celebrated at a Nepalese Curry house in Winchester – lovely food and a reminder of how much better my health is than it was 3 months ago!

So a check up in two weeks, and then possibly a PET scan sometime after that just to get an internal view of how things are going.

Meanwhile, Onwards and Upwards! Its a lovely sunny day as I write this, so time to go out and enjoy it! πŸ™‚

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Tuesday 12 March… More (good) results!

I had my three week check up yesterday! I went into the hospital in the morning for the blood test so the results would be available for the clinic appointment in the afternoon where I saw Professor Johnson – head of the haematology department. I first met Professor Johnson in 2004 when I asked for a referral to him from Guys for a second opinion – and again in 2007 when I was an emergency admission to Southampton after a round of aggressive chemo caused some problems, so it was a pleasure to meet up with him again. (Details of that saga start here)

The results are all good, with the possible exception of creatinine which has crept up slightly – the solution is drink more water!

So my next appointment and blood test is in a month’s time. I am down to three days of Ibrutinib, so I need to pick up new supplies from the hospital pharmacy this week, so I hope I dont have the delays I had last time!

So very much Onwards and Upwards!

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Wednesday 6th March… Results

I received the results of my blood test late Tuesday afternoon (after my post) and all is good!

The blood counts are fine, with the lymphocyte count falling, and the chemistry is good with the remaining liver marker back in spec! My creatinine levels were slightly up on last week (note to self – drink even more water) but much less than two weeks ago and only slightly above my normal baseline level.

So all good. πŸ™‚

Onwards and Upwards!

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Tuesday 5th March… Feeling good!

And 19 days since I started the Ibrutinib! The visible enlarged lymph node is no longer visible, and I’m not sure that I can still feel it under the skin, although surface anatomy is not my strong point :)! But good news anyway!

I had a blood test yesterday, but I have not had the results yet – however I’m sure that if there was anything worrying, I would have been told by now, so I’m just being curious! I am hoping that the last remaining abnormal liver marker will be back in the normal range, ad that the creatinine levels are similar (or better!) than it was last week.

My weight is still a bit low, despite my attempts to eat more – however as today is Shrove Tuesday, i shall be mostly eating pancakes this evening!

On a technical note, the gallery button doesn’t work – this used to link to photographs that I hadn’t posted on the blog. Unfortunately at some point when I was rebuilding the server, the database became corrupted and I’m looking to re-import it from the backups. This is not a trivial task because of the way te databases are stored (one big file) and I don’t want to risk compromising the blog database. However it remains a work in progress.

Finally, thank you to everyone who has added comments to the posts – they are very much appreciated!

Onwards and Upwards!

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Wednesday 27th February… Good results!

I have been playing telephone tag with the Clinical Nurse Specialists for the last two days, but today I managed to speak to Amy about the results from Monday’s blood test.

And its good news! The improvement trend continues, with one of my liver markers back within range, and another one nearly within range, indicating improved liver function. The kidney markers (Urea and Creatinine) are also significantly better – Creatinine at 125, which while above normal range is lower than my normal baseline of 130. This I think is because I’m making a big effort to drink more (water!).

So really good news after 12 days of Ibrutinib. My next blood test is scheduled for next week, with a clinical follow up the week after that – so it will be interesting to see what the results are then. Meanwhile my weaning off the steroids continues – I have developed dry skin with little cracks on my hands, but that should improve once the steroids stop. I’m on 10mg for another two days, then 5mg for 5 days.

So very much – yes, you have guessed – Onwards and Upwards! πŸ™‚

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Sunday 24th February… Ib+10

Its been a few days since I lat wrote, simply because there hasn’t been a lot to report! I seem to be tolerating the ibrutinib well, and wahat was a visible abdominal lump – an enlarged lymph node – has shrunk back to the extent it is no longer visible, although it can be felt just below the skin/muscle layer, but a much smaller mass.

I feel well in myself, and my daughter came round today and said I looked much better than I did when she last saw me in Guy’s! πŸ™‚

My weight is still a bit low, despite trying to eat more so I need to work on that!

Tomorrow I have another blood test, I will go into the hospital for that (because it will be analysed within hours rather than days if I go through my GP) but I’m not expecting to see any of the clinical team, although I will ring up later to see how things are.

So all in all things seem to be going Onwards and Upwards!

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Monday 18th February… Ib+4 and a Result!

It was check up day today, 4 days after I started taking the Ibrutinib. (this morning was the fifth dose). One of the questions I asked was how long it might take to start acting, but as the response is variable, there wasn’t really a definitive answer, but I was hoping that there might be some evidence today. However, yesterday I thought could sense some changes in the shape and nature of the visible enlarged lymph node. My concern was that I was seeing what I was looking for, but this morning I was convinced that I was’t imagining things, so it was with some excitement that I attended the outpatient clinic for blood tests and a check up.

The results are good – very good! The visible lymph node has shrunk and is softer (and its reasonable to assume that any other enlarged but non visible ones will be shrinking too). But the blood chemistry results sowed a reversal of the past deterioration, particularly liver function and some other markers. My kidney function (creatinine clearance) has also improved, but I need to keep up the hydration which will help improve things.

So a very good day. πŸ™‚ My next check-up is in three weeks, but I will be doing a weekly blood test at my GP – this is to ensure that I’m not in danger from the breakdown products of the cells, (tumour lysis syndrome).

Longer term, I’ll probably have a PET scan in about 3 months or so to see where we are with the lymphoma.

So very much Onwards and Upwards πŸ™‚

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Saturday 16th February… Ib+2

Day three of the Ibrutinib, and I’m pleased to say that I haven’t detected any of the possible side effects! πŸ™‚ . On the other hand it is very early on in the regime, so I will continue to look out for them. Similarly I haven’t noticed any reduction in the size of the visible lymph nodes, but again early days. I have another check up on Monday, so it will be interesting (such an understatement!) to see if the chemistry has stabilised, or better still, improved.

Meanwhile I am reducing my steroid dose, down to 30mg a day until Monday, when I reduce it to 15mg for 5 days, then down to 10mg. This gradual reduction should reduce any unpleasant side effects of steroid reduction (such as the oedema) that can occur after a course of relatively high steroid dose.

I’m feeling well in myself, and eating well, and more importantly, drinking plenty of fluids to ease the load on my kidneys – I hope there will be an improvement in creatinine clearance as well as some of the liver markers on Monday.

Onwards and Upwards!

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Thursday 14th February… It’s here! (Today is Ib0!)

I’m sitting in the cafe area of Southampton hospital having just had my blood taken for the blood test, and I have just heard from Mairead that the Ibrutinib has arrived! It will take abou 90 minutes for it to be dispensed down to the outpatient pharmacy, butby that time the blood test results should start showing so once I have collected them, I’ll wander up to the outpatient clinic to see how they are doing! Good news though!

And this is what I had waiting for me at the outpatient pharmacy! πŸ™‚

My daily dose

My blood results were OK, and hadn’t deteriorated too much since Monday, but there has been a deterioration since the end of January, particularly kidney and liver function markers. However I hope that now I have started the drug, that will start improving. My next check up is on Monday and I’ll post after that!

Onwards and Upwards! πŸ™‚

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