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Mid COVID times

July 20th, 2020 No comments

A quick note. I am blessed with a remission of this nasty little disease when the world has become obsessed with COVID-19. Thank God I got through all the chemo when there wasn’t this little bug around!

Now I live life to the full. I try to be healthy – walk ridiculous amounts of steps – and eat reasonably. I am fitter than I was and my hair has grown back (which isn’t necessarily a good thing in these COVID times!!!).

An old friend Oscar Chalupsky from South Africa is going through the stem cell transplant now – we sailed together in 1986 and I dont know a fitter guy at the time. Just shows how this horrid thing can hit anyone any time. Anyway – my thoughts are with him and everyone else who is suffering from Multiple Myeloma. I removed the passwords from all of my posts today because when I was diagnosed I had more questions than answers. Maybe by sharing my experience someone else can benefit.

Please if you are suffering from Multiple Myeloma reach out if you have questions. I don’t have all the answers but I do have first hand experience. It’s not nice – of course its not – but it is manageable and we can survive and thrive!

I wish you all the best.

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And I’m out!

September 4th, 2019 No comments

But … let us back track a bit. I last left you with a bag of Ice on me head as fever headed into its second day and stubbornly refused to go away.

That same fever lasted another week. It wasn’t the best of weeks. Fever really isn’t fun. They couldn’t figure out the reason. Many many blood tests and X-rays later they finally did a CT Scan and found fluid in my lungs – Pneumonia was the verdict. Explains the coughing up mucus etc. Having diagnosed it they decided the antibiotics I was on were good enough and a few days later (Friday 30) the fever abated and I started to become more “normal”.

Walk in the gardens

Weekend was a nice recovery with walks in the garden (how many laps can I do?) and by Monday 2 September I was deemed to be strong enough to go home – which I duly did with Oliver (stopping at the pub across the road in the vain hope that Uber over charge would reduce if we waited an hour).

Escape!!!
UBER overcharge reduction Guiness

So now I am home. Still weak but getting stronger every day. Apparently still susceptible to infection so have to be a bit careful and avoid crowded tubes etc. But basically I am now off all chemo and while I may have side effects for a while I don’t have the poisons in the body any more which is a very good thing.

They test the blood again after 100 days where they see where the Myeloma is in terms of state. Hoping its more or less gone. Last words from the sister at the hospital is that my blood counts had recovered exceptionally fast and they were very happy with he body’s response to treatment.

Apparently there is no point testing prior to 100 days as things are in a state of flux. So for the next 3 months I simply need to avoid infection and rebuild strength.

Great!!!!

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Too good to be true…

August 22nd, 2019 No comments

Well I cruised through the first 6 days on the stem cell transplant. What’s all the fuss about? HHhhmm….

Let me start with some detail on the actual transplant – as its quite interesting. The cells which were harvested from me a a few weeks ago were returned from the lab. In fact the process took place over 2 days – 6 bags per day. So they arrive in this weird sci fi thing which is essentially a cooler with dry ice keeping the temperature down a long way below zero.

They then need to defrost the bag so that it will flow back into my blood stream. Using a water bath the cells take about 15 minutes to arm up, at which point they are ready for reinfusion.

My stem cells

The process is time consuming and not helped by the fact that the nurse has to manually push the new cells back into me with a syringe – they are a bit lumpy so don’t flow nicely down a catheter. So she sucks them into syringe, flicks the tap at the top and then pushes them into me.

All in all quite interesting and a bit scary if Im honest! So then its all down to waiting. Day zero is the day the stem cells come back which was wed last week. They say the worst is day 5 which was monday. To be honest Ive been almost too fine until late Tuesday this week when things started to go pear shaped. Diahhorea and a total inability to eat doesn’t help. But then last night I got a fever. A fever which is stubbornly refusing to go away.

I sit here now Thursday evening with a bag of ice on my head (really!). Not the most modern plan to lower temp but maybe it works. Despite the fever I feel that things are improving a tiny bit. I managed to hold some food down today – will try again now with a late dinner of a chocolate protein shake and see how it goes!

On reflection the NHS staff are a really nice bunch. Very few of them are English by birth. Nurses seem to be philipino. Cleaners and juniors African. Sisters from Europe and doctors from all over. The activity last night when my temperature crossed the threshold was amazing – tests, cultures, antibiotics and even a chest x-ray! No waiting at 3 in the morning…

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Day Zero

August 14th, 2019 No comments

I was admitted last Sunday night to a delightful double room at St Barts which I shared with a chap who was in a very bad way from the same disease. He made me appreciate how lucky I am that we caught it early. He has been sick for 2 years and only recently did they correctly diagnose the issue.

Monday started with aa 45 minute procedure to insert a PICC line which is basically a semi permanent canula. Basically a tube goes into my arm and 44cm later emerges into the big veins just near the heart. End result is they can put stuff in and take blood tests without making new punctures each time which is a good thing! Apparently it can stay in for 18 months although I don’t imagine its being there that long.

Then came the Methalan along with loads of fluids etc to make it go down with less side effects. 6 bags in all.

They moved me to a single room yesterday – they want to isolate me from infection going forwards. So now I am in Ward 5C Bed 7. I guess I will be here a while.

Today is Wednesday and the stem cells will be re-introduced later today. All the while the white blood cell counts carry on towards zero at which point I will no longer have an immune system. Then the stem cells kick in with new cells and all is hunky dory. The zero day will be around the weekend and will coincide with when I get really sick!

Hair-wise – with it falling out anyway I have now shaved it all off. Picture below with my cap – thanks Brian and Dot!

So all in all I am well and all is good but the storm is on the horizon! Thank you all for your thoughts and those who have visited thanks for coming!

I end with a picture taken by Steve last night. He brought me some medicinal Irish drink …

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Update …

July 28th, 2019 No comments

I spent a few days in Amsterdam week before last.  I had a gaming show and meetings to attend to and also a small break after the induction chemo where I was feeling close to normal so wanted to make the most of it before the next phase of treatment.  Tricia joined me on the Thursday and we had an amazing weekend – was great fun and I came home Sunday rejuvenated. 

Last Monday (22 July) I spent a few hours on a drip being dosed with high dose Cyclophosphamide and a bunch of other bits and bobs to offset its side effects.  I am now self-administering Filgrastim injections until mid next week (31 July) in order to stimulate stem cell production.  

Side effects of the chemo are starting to make themselves known although not too onerous yet – basically loss of appetite so far although there is a rumour that my hair will start to exit at some point. Loss of appetite is in some ways a plus factor!  I do get tired a lot – it’s been like that since I started the induction and I guess will be for some time – I sleep 12 hours min a day and still get tired during the day.  The body is busy …

On Wed 31 July and possibly the following day as well I will have my stem cells harvested (a painless procedure where a machine extracts them from the blood into bags) and then, after a short break, on 11 August I will be admitted for 3 to 4 weeks to have the Autologous Stem Cell Transplant. This involves high dose chemotherapy (Melphalan) to kill the immune system (kills white blood cells etc) followed by reintroduction of my own stem cells to regrow them hopefully without the disease. I will be allowed to return home once I have a certain level of immune system but will be poorly and may get sick easily.

Recovery they say takes 2 to 6 months which is rather a large variance!  I will aim for the 2 month version, but of course I have no idea until I undergo the treatment.

In general, I have weathered the process well so far.  I have been fortunate with a flexible work environment although work has been stressful at times.  At least on the work front I have been surrounded by an amazing and supportive team.  The longest-term side effect so far has been tiredness – when I was on the VTD induction regime I found the end of every week particularly difficult. I also had problems with swelling in the legs and feet and issues with my eyes.  My eyes have this recurring issue where the tear ducts dry up and I have to treat with hot compresses.  I also believe my eyesight is deteriorating although that is hard to quantify.

This week I have had a loss of appetite (which isn’t all bad given that I have put on a lot of weight in the induction process!).  Wednesday is the stem cell harvesting then I presume no meds until the transplant so 10 days to be normal!!!  We shall see….

Overall, I am positive about everything.  I reacted well to the induction with the ParaProtein level falling from 40 to 5 – they say you have to have better than 50% reduction – I say take that!!!!  2.5 is the level at which its relevant (below that its not Myeloma) so 5 is entirely respectable in my view.  To say that I go into the transplant in any state less than slightly terrified would be a lie.  It is an enormous toll on the body and one which scares the hell out of me! At least I will lose some weight (and hair I presume).

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The end of Induction and the start of the Real Thing

July 10th, 2019 No comments

After 6 months of shitty medication I am in the wonderful world where I can now look forward to the really shitty thing! Autologous Stem Cell Transplant. Which basically means giving you your own stem cells.

It’s only half the story of course. Why would you need stem cells?

Because they are the building blocks of blood. And in my case it’s the blood that’s not in good shape. So they basically get rid of it.

Melphalan is administered intravenously in a seriously strong dose. It’s only a day but it does the job. All white blood cells die.

Then after a couple of days they give me my stem cells back. The body does what it does – rebuilding the blood cells hopefully without the disease.

All sounds ok. When the immune system has recovered sufficiently I can leave hospital and recover at home.

Apparently it takes up to 3 months to recover from this. Sounds like a seriously shitty thing! Information is scarce. I guess I will provide the truth in my case through this channel.

So here is my timetable…

22 July 2019 – Cylcophosphamide priming – 4 hours of intravenous meds to prepare stem cells

25 July 2019 – start 1 week’s daily Filgrastim (Gscsf) injections – apparently I do these myself (that’s a new one for me!)…

30 July 2019 – medical review and admittance to hospital for stem cell harvesting

31 July/1 August – on machine for 4-5 hours to suck the stem cells out of the blood. Basically involves blood going out of one arm through the machine and into the other arm. Carries on until enough is harvested.

11 August 2019 – admission for the main event. This day is called T-2. It’s a Sunday and on the Monday they administer the Melphalan. Thats the start of the bad stuff. Mid week I get my stem cells back.

They say it takes 3 to 4 weeks for all of this but the nurse tells me I might be out in 2. Basically it depends on how soon my immune system is ready to cope with the world. Then I go home and muddle on while I improve. Hair will be gone and I may lose some weight (there is a silver lining!).

They say it can take up to 3 months or more to get over this stuff. I will be aiming for a shorter solution!!

To say this is scary would be an understatement. I never wished for this or wanted it. I spent the past 6 months on VTD (Velcade, Thalidomide, Dexamethasone) which is not very nice and has side effects which after a while started to wear me down. Now I have to do this. Not nice. But I will prevail. I have to trust the doctors who say this is the right thing. But it sucks! Big time.

Here’s to September and getting better!!!!

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Cycle 4 and all seems good

June 3rd, 2019 No comments

Visit to the venerable Prof Kavenaugh this morning and he takes the decision that 4 cycles is enough induction – I have been steadily improving (reducing the Para C and other markers) and he is keen to move onto the Autologous Stemcell Transplant. When I came in the Para C was 41 – it was 9 on 20/6 and has now come down to 6. Presumably over this next cycle it will go lower which is good progress and enough for the next phase. In general it should be less than 3.5. So I have one more cycle of induction starting today (5 weeks) after which the heavy stuff happens.

So this cycle ends 8 July after which there is a 10 day period to let these meds escape the body. Then on 22/7 I have chemo to mobilise the stem cells. Stem cell harvesting is 31/7 to 1/8 after which there is a 2 week break before admission as an in-patient for the transplant. The exact date of admission is not yet determined due to availability in the hospital but will be either 11/8 or 18/8 (they like to start on Sundays).

Admission is for 3 weeks. I will be in a sterile ward and visitors will have to wear masks etc. First week I probably won’t be wanting to see anyone but after that would be good to have the odd visitor. Basically on day 2 they wack me with heavy chemo. The idea is to get rid of any remaining traces of the disease with the side effect that it also gets rid of most of the immune system (hence the stem cell transplant)!

Then there is a short delay and they put back some of the stem cells that they took out.

Apparently the 2-3 weeks in hospital and the first week at home are the hardest parts for me. They say it takes up to 3 months to get over the whole thing – shall see about that!

Thank you all (and in particular Dorothy and Tricia) for your support. Induction has been OK – not too many side effects apart from fatigue, but manageable. Not sure I’m really looking forward to the next bit but if it does the job …

There is quite a good booklet on the Myeloma UK website about all this here.

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End of second cycle

April 30th, 2019 No comments

So the paraprotein result is now down to 8 (from 40) which is not bad – it gets slower to reduce as we get lower. Basically 40 at the start, 13 end of last cycle, 11 mid may and now 9. All in the oncologist is happy with the scenario. Seems likely now that it will be 4 cycles not 6 which puts me into late July for the heavy lifting.

Treatment is fine – just have to deal with fatigue and infections are a bit easier to come by – spent the last week with my eyes playing up but happily that’s cleared up.

Its my birthday today so out to celebrate with Tricia and a bunch of friends. Thanks for following the blog!

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End of first cycle

March 26th, 2019 No comments

So this week is the start of the second cycle of induction and a chance to visit the Prof for his take on how its all going. And in his words – “quite remarkable – very rarely see the paraproteins reduce so fast”. In other words its working!

Paraproteins are the measure for myeloma type diseases. There shouldn’t be any, and any significant amount (>30g/L) is indicative of Myeloma. Lower levels typically mean MGUS which is not relevant here.

As you can see the Paraprotein serum is down from over 40g/L when I started treatment to 13g/L. There are still other issues but this at least means the induction is working.

I am in general fine – had a slight cold last week which took a lot longer to shake than usual – but apart from that just more tired than normal. I will continue with these cycles they say for 4 or 6 cycles – it seems that 6 is better than 4 so if I don’t start developing issues I guess it will be 6 cycles (35 days).

Thank you all for your support and messages!

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Going in to Week 4

March 10th, 2019 No comments

Well there is not a lot to tell. The treatment does take its toll a bit. I get tired – super tired towards the end of the week. Friday night I had a bit of a scare with a temp of 38.4 but after calling the help line they told me to take some paracetamol which seemed to do the trick.

Never occurred to me – was thinking it was for pain! But of course we give it to kids for fever so I guess it has dual use.

Nice view of the shard from St Barts

Anyway – this coming Monday is the last injection in this first cycle and then I guess they look at the blood and see how well its working. I see the Oncologist on 18 March so that will be when I know a bit more about what is going on. Until then – soldiering on!

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