Peter’s Hospital Diary

Not a lot to report on the health front – still popping my four tablets a day without an apparent side effects. On a health related note though, I have been told that I can continue diving and Im waiting for my medical certificate as I write this.

In other news, I spent a fun four days in France last week. Mark (fellow blogmaster who has featured here before) and I went to his house there where we did a bit of work in converting an attic

Before

And after

area into a bedroom (a lot more to do – that was part of one wall!), as well as mowing grass and some swimming pool maintenance.

The pool

All good fun and a change from my normal daily routine! All part of ‘getting my life back’ to normal.

Onwards and Upwards!

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So a quick trip into Southampton today, where I saw Professor Davies – the last of the three haematology consultants and someone I hadn’t seen before. They all seem very keen to see me – or maybe they draw lots and he got the short straw. Interestingly he trained with Dr Welch, the last consultant who saw me at Guy’s.

Anyway, blood results were all good – creatinine was lower, although not as low as I had hoped, but definitely a downward trend. There are no reasons why the Ibrutinib should stop me diving, so I obtained a set of bloods for the diving medical referee, so I can apply for my medical certificate… another positive step.

And my next consultation is in two months, although a blood sample is required in a months time. And finally, it was decided that they would like a CT scan, scheduled for some time in the next 6 weeks! We did have a discussion about CT and CT/PET scans – CT onlty are less expensive, and Guys are at the forefront of PET scanning (Professor Davies knows Professor Sally Barrington – a pioneer/ambassador for PET scans at Guy’s)

So I came home very happy and definitely feeling that things are going Onwards and Upwards! 🙂

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It’s a lovely sunny day outside, after a mixed week, both of weather and activities!

You may recall from the last post that although two months of Ibrutinib had been prescribed, only one had been dispensed. I sent an email to the Clinical Nurse Specialists who rang back to say that at the time the script was written, the pharmacy didn’t have sufficient stock to dispense two months, but the second month had been issued and was ready for collection.

So, armed with that knowledge, I popped into the hospital on Thursday to pick up the next months supply and have my blood sample taken ready for my appointment tomorrow. I have been making a an effort to increase my water intake, so I hope my creatinine levels will be lower and closer to my baseline level. I also want to ask whether I can carry on diving while taking Ibrutinib.

Friday was a sad day – going to the funeral of my cousin Margaret (first cousin once removed). I travelled up to my sister and then we travelled together to Birmingham. She was a remarkable lady and it was good to meet some of her relatives and celebrate her life.

But life goes on – and as always, Upwards and Onwards!

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Its been a few weeks since I last posted, and I’m glad to say that all is still going well, with my next check up next week. However the bank holiday means that there will be a five week gap between appointments and prescriptions and I run out of medication next weekend. This was anticipated by Dr Lown at the last check up and my last prescription was written for two months supply, but only one month was dispensed, so I will be asking for an early prescription so I can collect it (and do a blood test) before the next clinic.

I was reading back through the recent posts today, and I noticed that back in January I said that there were two possible diagnoses – one was that the mantle cell lymphoma had developed into a Blastic form (BMCL) or it was a new lymphoma, Diffused Large B Cell Lymphoma (DLBCL). I didnt explicitly say that the diagnosis waa refined down to the Blastic form of mantle cell lymphoma which is why I was a candidate for the Ibrutinib.

Meanwhile, I had a great Bank Holiday Weekend, with a 60th Birthday party of a friend from my university days! Great party with some other uni friends there, so a lovely catch up. I was thinking on the way back that I am vey blessed to have such supportive friends who are still in touch with me (and that I am still around to see them!!). I have another reunion with the friends I shared a flat and house with in those days, so that will be a good weekend later this year.

I must also thank other friends (some of whom live locally) who have been very supportive and of course my lovely children. 🙂

So … Onwards and Upwards! 😀

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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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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! 🙂

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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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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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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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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! 🙂

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