Archive for March, 2019

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! 🙂


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. 🙂

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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