Archive for the 'Getting My Life Back!' Category

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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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! 🙂

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!


Friday 1st February … A slight set back!

I was hoping to have started the Ibrutinib yesterday, but when I rang the pharmacy I was told that the prescription hadn’t been written and there was a delay “with the form”. This was slightly worrying because I was getting to the end of the steroids and I needed new supplies!

However a quick call to the Clinical Nurse Specialist (Amy) established that there had been an error in the application form (this is a learning curve all round I think!) but it had been resubmitted, and a prescription for the steroids had been raised for collection today.

So quick trip to pick up a reduced does of steroids and the pharmacy say the Ibrutinib will be here on Monday.

So slightly frustrating because I really want to get started on this, but there is nothing I can do to influence the course of events, so I just have to be a patient patient and enjoy the weekend! There are still huge positives, the steroids have helped, and while they have been hugely beneficial, there are long term implications, so it’s good that it is being reduced!

I suppose I’m keen to start because there is also a small risk that I might not respond well, and I’d like the reassurance that I will, but again nothing I can do about it! At least I will know as I expect to see the lump shrink, just as I have with the steroids! Nothing like a bit of re-inforcing positive feedback.

So I think a relaxing weekend and fingers crossed for Monday when we will continue…

Onwards and Upwards!

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Tuesday 29th January…Update and good news!

I had a quietish weekend after the ‘excitement’ of the last three weeks – my parents visited which was good, and I spent some time getting the house back together after my lengthy absences.

But in reality this was just marking time for the follow up appointment scheduled for yesterday afternoon, when I was hoping to find out the direction my future treatment would take. Would it be the Ibrutinib or conventional chemo?

So it was with some trepidation that I turned up at the outpatient’s clinic to see what was happening – but prepared for either. So it was with some surprise and relief that I have been accepted for the drug on a named patient basis. I think the team at Southampton were surprised as they have not managed to get the drug on that basis, so it was purely by the efforts of the team at Guys. Maybe this will provide an ‘in’ for the Southampton team – I hope so for the sake of other patients who may be in the same position. (I will write a page about the politics and background of Ibrutinib).

So the drug has been ordered and should be here tomorrow or Thursday. It is a tablet that I take once a day at home, and go into outpatients for periodic monitoring. It is well tolerated with few side effects, so a much less unpleasant treatment plan that the alternative.

It is a drug I will keep taking for as long as it works. In relapsed patients tis is typically 2 to 3 years (but typical is a statistical type term and applies to populations, not individuals)

So this is buying more time – but in effect that is what my treatment over the last 20 years has done. This does not preclude any other chemo or treatment further down the line, and there are new treatments under development. But this gives me back some control and ability to plan things for (I hope!) the next 12 months or more (provided I respond well to it – which will be revealed on the next few weeks)

So I will keep you updated with progress. I have also released this to the wider internet for the time being – I’ll see how that goes!

A view over Southampton Hospital

So very much Onwards and Upwards! 🙂

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Saturday 26th January…And home

Yes! Made it home! It did take 4 1/2 hours for my ‘party bag’ to be delivered, which was frustrating, but at least I had ordered an evening meal so I didn’t go hungry, but I was getting a little impatient! But Katie and Chris collected me at 7pm and whisked me home where I could settle down and relax. Of the 25 days in January so far, 22 have been spent in hospital!

But I have come away with steroids for the weekend, and the supporting tablets, and a return visit to the clinic on Monday, where bloods will be checked and I hope the direction of the next stage of treatment will be determined. Katie suggests I take an overnight bag with me on Monday – I might well do that!

But nice to be home and sorting the house out. I slept fairly well (although it seems very quiet after the hospital ward!) and today I have done my washing, made some sup and baked 4 loaves of bread – powerful stuff these steroids! Getting a bit of normal life back. And I also have my parents visiting for the weekend!

So it has been quite a month so far – not at all how I expected the year to start, and it has been a bit of a roller coaster. The speed at which this developed has been a shock (no evidence of it at the November check-up) but at least it has been caught and a plan is in progress. It has been odd loosening the links with Guys and the wonderful people there, but good to be with the lovely people at Southampton, and makes treatment much easier for me.

I will continue posting as the treatment progresses, and of course if you wish to add comments, I’m always delighted to receive them! (first comment is held for moderation as an ant-spam precaution)

So – Onwards and Upwards! 🙂

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Thursday 17th January… and home!

Yes, I was discharged yesterday, not without some delay though!

The kidney function test completed at just after 2pm (results to follow) just as a friend, Mark, turned up to visit. (Long term readers of this blog will know Mark as a fellow blogmaster who first set up the blog for me in 2006 as a means of keeping everyone informed about my progress when individual e mailing became too much). Mark happened to be in London yesterday, but it was fortuitous for me as I could cadge a lift home!

So I was all packed and just waiting for my discharge note and ‘party bag’ (medicines to go). I expected a bit of a delay as I was expecting a schedule to wean me off the steroids – but in the end it took four hours before the prescription was written and the drugs delivered from the pharmacy! I suppose in the priority list, medicine for a patient going home or the needs of a sick patient, my needs have lower priority, but it was frustrating. Im the end we sat and had a coffee so the bed bay could be released back to the ward. In the end no steroids were prescribed as I don’t need to be weaned off them as it was only a short course.

But the ‘party bag’ arrived and we caught the train to Richmond where Mark’s car was parked and I got home at about 8:30pm – tired (and to find my car had a flat battery!)

But a long but restless sleep and the sun is shining today and the world looks good.

Of course, while the immediate problem (hypercalcaemia) has been addressed, there is the longer term issue of the lymphoma. The feeling is that it is the blastic form, which indicates a particular course of treatment, but I have a follow up appointment next Wednesday, so things may become clearer then.

I will be continuing the blog – maybe not every day, but certainly when there is something to report!

Meanwhile, I add nurse Liz (who chased up the progress of my party bag yesterday) to the Percy Pig awards for her support yesterday, and my thanks to all the staff on Hedley-Atkins Ward at Guy’s Hospital.

Onwards and Upwards!

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Tuesday 15 January … Part 2

Big update deserving a post of its own!

Just had a visit from my consultant, David Welch. Good news is that my blood chemistry is significantly improved with creatinine down to 140 (still above my baseline of 130 which itself is higher than the average) at the Ca is down to 2.73 (not sure of the units!) which is still high but heading in the right direction.

So with IV stopped, and a PET scan scheduled for tomorrow I might me discharged tomorrow afternoon or Thursday morning!

So then what? Good question, well presented!

The mass is responding to the steroids, but there is still some uncertainty over the diagnosis. It could be diffused large B cell lymphoma (DLBCL) or it could be Blastic Mantle Cell lymphoma (BMCL); both look very similar under the microscope, but have different treatment options. DLBCL would be treated with conventional chemo, while BMCL would be treated with a drug called ibrutinib. Histo-pathologists are stareing down their microscopes as I type!

Ibrutinib has proved to be very effective against conventional MCL, but it’s efficacy in BMCL is less well known and it may be less effective – so maybe I am being a guinea pig!

Anyway grounds for optimism!

There are still some questions to think about – do I continue at Guys where they know me, but it’s a long trip for blood tests, or could I have blood tests done locally, or have the treatment and management at Southampton where I have been treated and have a MCL expert in their cancer centre? But I don’t need to decide that yet!

(Oh yes, I repeated the question about how steroids work in stacking cancer cells, and it seems that the exact molecular mechanism isn’t well understood. What is known is that it works! Good enough for me!)

So very much Onwards and Upwards!

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Friday 4th January – a bit more news

Just after I had written up the blog for yesterday, my chauffeur driven wheelchair was summoned to to take me for an ultrasound scan. Once I had advised the radiologist to stop looking for my spleen (it was removed 19 years ago!) I asked if he cared to share an opinion, he confirmed that there was indeed a mass (!) but more importantly it didn’t seem to be attached to any abdominal organs. He did think it was probably lymphoma related, with an outside chance that it could be a sarcoma.

After transport back to the ward, Rachael popped over to get a list of things I might need and just in time for the consultants visit. The haematology team are definitely veering towards the lymphoma route. However they want to do a biopsy and PET scan first – probably on Monday, so I will be here over the weekend!

I slept fitfully last night – about 2 hours at a time interspersed with a race to the loo complete with IV stand!

Consequently I was a tad washed out this morning and spent most of the morning dozing! (Well I can, so why not?) A junior member of the team popped in to explain was was happening and to confirm the the CT scan results correlated with the ultrasound.

The blood test this morning should that the creatinine and calcium levels are moving in the right direction, and my blood pressure is the highest it has been for some time!

Rachael came in this afternoon with a few goodies shower cream – much better than the China Pharma stuff I was given, some squash – makes drinking water far more pleasurable and (most important) a phone charger!

One big improvement is the WiFi coverage! If you read back to 2006 I was using a dial up modem through the hopital switchboard whoops!) or pointing the laptop out of the windo to latch onto any unprotected WiFi network :).

WiFi point above the bed opposite!

Only thing is that the WiFi won’t let me log into the blog so 4G to the rescue!

And I spotted this at the top of the building – I think it’s a mobile phone mast can’t quite be certain

One other thing I forgot to mention is that a shot of LMDH (low molecular ddensity heparin) is given at night to reduce the risk of blood clots. As an old hand at self administering those, it’s been fun getting my eye back in!

I’m now having fluid out put monitored, roll out the collecting bottles! Actually quite good as I don’t have to dash to the loo with IV stand in tow!

I feel somewhat relieved that we are closing in on a diagnosis as it means treatment plans can be formulated. Of course it’s a blow as well, life has taken a big turn for the better, so I hope that this is just a blip on that path.

So… Onwards and Upwards

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Wednesday 2nd January – Happy New year … from Guys

So it seems that my blog posts are like buses – nothing for ages, then two come along at once! So what, you might be asking, am I doing at Guys, on the Hedley-Atkins Ward in the evening of the second day of the New Year? Read on and I shall explain!

You will recall that I had a check up about seven weeks ago and all was fine, but about 3 weeks ago I noticed a lump near my navel which looked s bit like an umbilical hernia.

I made a an urgent appointment to see my GP who thought there was something else going and referred me to Winchester Hopital to see the Colo-Rectal Consultant and to have another blood test as my Creatine levels were high. She came to conclusion that it wasn’t bowel related related, but that a CT scan would yield more information.

Meanwhile I had given the Guys team a heads up and they brought my next review forward from May to January 9th – and then when my CT scan date was confirmed, forward again to today.

The scan was on Monday but when I arrived today the results hadn’t been sent through – however I had a full set of bloods (amazed I still have any left!) and a comprehensive examination which showed that I didn’t have any enlarged surface lymph nodes (groin, armpits) – which is good news! I will probably have another PET scan in the next couple of weeks – I think my 23rd!

So I was sent on my way but instead of catching the next train, I called in to have lunch with youngest daughter. While there, I had a call from Guys asking where I was and could I come back for urgent treatment to reduce high blood calcium levels. And here I am, admitted overnight in Hadley Atkins Ward opposite Samaritan Ward, where I had all my transplants 12 to 20 years ago.

It feels strange but oddly reassuring to be back, a lot has changed! The ‘shabby chic’ (more shabby than chic) retro look of the 1960s has gone as the wards have been completely updated. The food, about which I had strong opinions – see ‘About…Hospital Food’ – is tasty and cooked in the hospital premises instead of being sent by slow boat from St Thomas’s and then re-heated. I have just had beef goulash and Plum and Apple crumble. So it seems that the catering department has realised and embraced the notion that hospital food is meant to promote patient recovery, not hinder it!

What hasn’t changed are the wonderful nursing and medical staff.

As for me, the last three weeks have been a worry, especially as my personal life in the last three months as taken a decided turn for the better.

So in time honoured tradition,

“Onwards and Upwards”

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