Saturday, 31 March 2007

Phew- whacked!

Seem to have hit a real tired couple of days- two days since I stopped my last steroids and also after 21 days on the Lenalidomide. Bit tired and feeling fatigued. For those of us myeloma patients- there is a big difference between being being tired and being fatigued. I feel a bit fatigued. I don't think I'll paint the guttering today!

And for those of you who wondered what this "shigles" condition that I referred to in an earlier post - it is of course the "shingles!" though "shigles " does have a nice cuddly feel to it.

Thursday, 29 March 2007

Marie Curie Hospice links

Meant to say- and this might be useful for some myeloma folks- I have had contact with my local Marie Curie Hospice. About a year ago, my transplant nurse suggested she get the Marie Curie team to contact me. I have to confess I wondered what was happening- are they not telling me something!! Became even more paranoid when in the same week my GP also contacted me and suggested I do that. Its clear that in the future I will/may have to call on the hospice for help and may have to spend time there. However, the suggestion from my nurse and GP wasn't the result of some background conspiracy but a new approach to putting possible hospice patients in touch with Marie Cure workers earlier than in the past. This means there is face to face contact/relationship build up before it becomes a critical/emergency issue.

In my case, Elspeth and I ( importantly- its a service for the family and not just me)were visited by Barbara from the local hospice. To cut a long story short we learned about the hospice, what it might offer me later but also what it could offer me and our family just now- alternative therapies/treatments/respite etc. Barabara also encouraged me ( with great foresight I have to say given current problems with my left side) to go for disability allowance/blue badge/bus pass etc. And by putting the Marie Curie stamp on my applications I had all these in hand within a couple of weeks and have also taken it further to have an automatic motability car made available to me( what a great service motability provides). I also of course now have a contact at Marie Curie and we keep in touch but not just for emergencies- so its proven very very useful and I hope other regions offer such a community based Marie Curie service. I have to keep repeating that I have been really impressed by the quality of care and joined up service provision my wife and I have experienced in Edinburgh.

First Three weeks on Lenalidomide- pretty good

I've now reached the end of the 21 day block of Revlimid and dexamethasone and now enter the rest week Reviewing all that and thought you might like to know my thoughts etc. First though- to answer a question put to me yesterday- am I in any pain? As we all know Myeloma hits us all differently. In my case, though from the outset I've known that I have lesions in my arms, legs, spine, pelvis and skull I have been very fortunate in being occasionally sore but never really in much pain at all. Certainly not as much as other myeloma patients. The only pain I've had has been as a consequence of the lesions and not the lesions as such. So Ive had broken arm pain and surgery pain but even then that's been manageable. The worst pain I had was the effect of a badly infected Hickman line ( my third) and great relief when it was removed. Even now I'm relatively pain free. My display of Myeloma has usually been in the form of strings of infections, shigles three times ( which I confess to finding my last lot pretty sore) and high temperatures- usually resulting in stays in hospital for couple of days etc. Fingers crossed this pain free route will continue.

What has the first three weeks been like on the lenalidomide? Actually better than I thought it would be. Keeping my diabetes under control has been an issue but now that I seem to have that sorted its working out OK but I clearly need to take more insulin at the start of the days when I'm on dexamethasone. When I look at what I've been up to in this first three weeks I'm really quite pleased with it all. So- although on Revlimid and Dexamethasone I've-

lifted a laminate floor and prepared skirtings for sanding folks
replumbed a new immerser circuit for my alternative energy sources
designed and built a home made wind generator
converted my exercise bike into a battery charger as a power source
entertained an American colleague for three days
had three days worth of work style meetings involving fair bit of travelling
been having fun travelling round Edinburgh getting value from my new bus pass- but able to negotiate all buses
still recuperating from the insertion of the pin in my leg and this has slowed me down a bit
been out for meals
also been listening a lot more to music and actually hearing it rather than treating it like musak- a real treat
also keeping the blog going!

As you know I don't want the lenalidomide to be effective only if I have to stay in a darkened room- that wouldn't be much fun and I'm pleased at the way its seems to be letting me carry on doing things. I have various coping strategies which are now a matter of course- I do pace myself more and I also use labour saving devices as much as possible- eg electric screwdrivers/electric saws( not necessarily a good mixture of devices for someone permanently on warfarin!). I warn people at meetings that I might need a break in the middle. Anything to allow me to keep going within the limits of my energy

As for the lenalidomide as such - I don't really know yet what effect it is having on the myeloma or the paraprotein level and that will come after my next bloods. The only sign I am on the lenalidomide ( and this happened when I was on the thalidomide and dex regime )is that I tend to get very florid and bear a passing resemblance to a strawberry lollipop. I have also been very tired on occasion but that may be as much a lack of sleep with the steroids. I've also- again probably as the dexamethasone throws me into higher sugar levels and I mimic diabetes- lost about 4 or 5 kilos-not a hardship for those of you who know me!

So all in all- pretty good so far. My life has always been a mixture of practical, outdoor and work stuff and I still seem to be able to keep that going though limit it all a bit more. Hope it keeps going like this AND that the paraprotein comes down. Now we'll see how the week without drugs go.

Tuesday, 27 March 2007

Am I bloggered? Is this face really bloggered?

To those of you who know of Catherine Tate's catchphrases( and indeed the Prime Minister's after Comic Relief) you'll understand the pun. To the others it won't make any sense at all!! But it fits the mood this morning. Am I bloggered? Yes I am- I'm well and truly caught up in writing this wee diary and more of that in a minute. But first a quick catch up.

All under control though more difficult this time to keep my blood sugars down- I guess there is a cumulative effect of the Dexamethasone I have to take into account when settling on my insulin doses. But not a major problem. The main issue for me though is how good it is to be able to do some work again when still getting treatment and the hope I can keep this going. Working on an exciting initiative that I'll tell more of in later posts but a very positive day yesterday which I'm sure contributed to my only having two hours sleep last night- felt like a wee boy at Xmas time!! More work meetings today and if I can pretend to stay awake I'm looking forward to them.

In terms of being "bloggered"- I'm finding writing the diary quite useful for me and not just for sharing experiences with others- I can be that selfish! One of the difficulties we as a family have found with Myeloma is that you never quite know what is going to happen next or indeed when it is going to happen- there is an inbuilt " uncertainty" factor. This has a number of implications for family and friends and in particular I'm sure there is an element of myeloma support fatigue and people never quite know when to hit the emergency emotional button for us. My style as you know is to be as open as I can about what's happening but there is a fine line to be drawn between underplaying what's happening or indeed overplaying it. For example, we want our children to know everything but equally don't want it to diominate their lives- so sometimes we don't tell them I've ended up in hospital until its clear I'll be there more than a day or two. Nor do we want to have all our social things dominated by myeloma ( my TMTMTM principle). So the blog is proving to be more than just letting me be the showman in my blood- its also a good way of keeping folks in touch without making it a big issue.

Its also a good record for me and a means of introducing things that I'm doing during treatment which are important elements in my life. If the revlimid were very effective but I had to sleep in a darkened room and have no contact with the world - I wouldn't want that. If it lets me do normal things as much as possible - even if it were for a shorter survival time- I'd much prefer that and allow family and friends to not feel that every event needs the emergency button. Not just about clinical success but more importantly about how it helps quality of life. My wife and I feel a wee bit like the holders of the nuclear bomb key- both of us have to agree when to press the red emotional button!

I should also point out this blog has the facility at the end of each post for you, reader, to post a comment- feel free to do so if anything comes to mind from my ramblings.

Sunday, 25 March 2007

Steroids and work

1st day of the last block of steroids this cycle. Blood sugars immediately up up but under control again. I've been confident enough from the first couple of days to arrange three days of work commitments at the beginning of the week so we'll see how that goes. Have to say that when I was off the steroids this week I actually slept very well so maybe /hopefully a good pattern falling into place.

All buoyed up by the fact that Scotland beat Georgia at the weekend. Now for Italy mid week!

Friday, 23 March 2007

First Bloods and TGV

Had the first blood monitoring bit of the study yesterday and in short all is well. Won't have a paraprotein test done till next time but pleased at the way things are going. In fact, all seems good enough for my wife and I to now plan one of the things I have on my wish list- to travel by TGV to the South of France. So that is being organised now as I write! Looking forward to my fast train journey.

I missed the Myeloma UK 10th Anniversary event on Wednesday- I was being cavity wall insulated ( and I feel all the better for it!). Congratulations to all at Myeloma UK and many thanks from many of us who have depended on you.

You might also like to know the blog is being watched by folks from around the world- there is a little tracker right at the bottom of the front page- its public and by clicking on it you can see how many folks are watching/reading/where they're from etc.

Wednesday, 21 March 2007

Redressing the balance and TMTMTM

I'm conscious of maybe sounding a bit negative given the various hiccups of the past few days or so- given lesion and bone issues etc. I do though also need to point out that I'm still doing some work though conserving energies as usefully as I can; involved in a couple of exciting initiatives; and of course totally hooked on wee alternative energy projects. The fact I'm still here is in itself not a bad thing! As my wife and I agreed last night- whatever else is happening we actually have a very good quality of life. As you 'll know from my earlier pieces- my TMTMTM ( There's MoreTo Me Than Myeloma )principle is one that has been very useful in keeping a perspective on things and reminds me that I'm not just a myeloma patient. In many respects, my myeloma and my wife's own experience of cancer have given us opportunities for experiences we might never have had.

And if I can tolerate the rest of the revlimid trial as well as these first two weeks I'll be well pleased. Certainly seems more manageable ( though its early days) than when I was on the Thalidomide/Dexamethasone regime.

Tuesday, 20 March 2007

Todays' contribution to the saga and bus pass

Last week I had news that I have another lesion in my arm that may need to be dealt with- not enough bone! Today I've been to the hospital dentist and a wee bit of concern that a tooth I had out 6 weeks ago not healing as quickly as it should be- maybe too much bone growth! because of possibility of osteonecrosis linked in with my Zometa ( bone support drug). Only a possibility at this stage but having had only a couple hours sleep last night because of the steroids it does seem a bit never ending. Interesting again- its the left side of my body where all my other bone issues are.

The silver lining to my mobility issues is that I now have a free Scotland wide bus pass and have used it for the first time today- three times! One of my friends has just got one as he has turned 60 so we are planning to explore Scotland by bus!

Monday, 19 March 2007

Revlimid/lenalidomide cycle

Been asked by someone to make clear what the cycle is I'm on.

Its a 28 day cycle and it goes-

Days 1- 21 Lenalidomide and also Allopurinol
Days 1-4, 9-13 and17-20 - 40mgs of Dexamethasone ( Steroids) - so 20 tablets each morning
Days 21-28- a rest week

Then start the next cycle. Each cycle is the same except that I think I ease off on the Allopurinol after 6 weeks or so. The study means I'll also be monitored quite regularly for blood/paraprotein etc changes.

Revlimid/lenalidomide cycle

Been asked by someone to make clear what the cycle is I'm on.

Its a 28 day cycle and it goes-

Days 1- 21 Lenalidomide and also Allopurinol
Days 1-4, 9-13 and17-20 - 40mgs of Dexamethasone ( Steroids) - so 20 tablets each morning
Days 21-28- a rest week

Then start the next cycle. Each cycle is the same except that I think I ease off on the Allopurinol after 6 weeks or so. The study means I'll also be monitored quite regularly for blodd/paraprotein etc changes.

Sunday, 18 March 2007

Steroids are good!!

"I don't care how well you're feeling and how well your leg is healing- I'm not getting in that thing again!!" ( Dillan the spaniel)

I think I'm maybe looking at the world the wrong way. I'm now back on the steroids and they are certainly buzzing me up and interfering with sleep etc. However, the four days I was off the steroids ( its a four day on - four day off regime) I had really forgotten how you can crash after the boost of the steroids. I'd felt pretty low and tired and really couldn't get going at all. I could see my wife had simply assumed I had resumed membership of the grumpy old men brigade. Looking ahead to how long I'd be on the steroids in the study didn't much appeal given the way I was feeling. Back on the steroids I feel much better, more sociable, able to do things and though having trouble sleeping, managing to plan my nights to be sure I have plenty distractions (like writing blogs at 3.30 am!). So I think rather than view the steroids as a problem and look forward to being off them, I'm now viewing the days on steroids as my good days and will adjust what I do and can do when I'm off them on what I might need to rethink as my less good days. So steroids are good! Maybe the Scotland France rugby result hasn't helped!

My wife and children have given me a great early birthday present- an Ipod Nano- surely a classic mix of design and function. I've built up a library of some of my favourite music and have also now entered the world of podcasts. During the day I locate radio podcasts to listen to during the night and have even managed to set up a subscription to certain podcasts which automatically up date when I attach the Ipod to the computer. Clever stuff. One of the first podcasts was an interview with Lynn Truss ( author of Eats Bamboo Shoots and Leaves). All about the funnies in the English language- especially where the role of the apostrophe is involved in statements as in the sign which read "Residents refuse to be put in bins" which reads very differently from the one with the apostrophe- " Resident's refuse to be put in bins". What the programme set my wife and I off on was a family nostalgia trip about gently humourous signs we'd seen. Our favourites include simple ones like those on display in shops which say " Sorry, no dogs". Have they run out of dogs? My own favourite was spotted in Ireland when I was doing some work there, drove round a corner past a garage with the sign " Punctures, a pound"!

Hang on a minute Stewart- this is meant to be about the drug trial. It is- filling in the time is a part of it as is the support of family in finding distractions. Right, I'm off to listen to Kate Adie- there must be a war some place.

Thursday, 15 March 2007


Bit of a bugger. New lesions discovered in my arm today and so being monitored again with a view to possible more internal scaffolding. Interesting- its all mainly my left side of my body where the damage is appearring most. I'll need to remember not to fall off my bike on that side. Might however have to think of an automatic car to address all this. Need to find out whether the Lenalidomide can stop all the bone damage occurring or whether its too late for that now.

Spoke too soon ? and powering the national grid!

Now a week since I started the trial and it seems the steroids are hitting me harder than I thought. Despite not having had any Dexamethasone since Monday they must still be rattling around my system and I've had pretty broken sleep and feeling a bit spaced out on them. Informal review of my blood sugars has been done with research team and diabetic practice nurse and decision still to keep at the high level of steroids but to be reviewed. ( For those of you interested I'm being sent a leaflet specifically on Diabetes, Blood Sugars and Dexamethasone- so clearly not a unique situation I find myself in). But at least my blood sugars do seem under control. Difficult to know at this stage what effect if any the Lenalidomide is having- that's where my first set of blood tests next week will be interesting.

Still trying to keep some form of exercise up though hampered by the pin in my leg which is also being reviewed today. Can't get out on my bike yet but have resorted more and more to my exercise bike. And since I'm such a good stereotypical scot and don't want to waste energy I've attached it to a dynamo which now charges 12 v batteries to be used in my alternative house energy system. If interested let me know and I can send plans for such a set up. It won't power the national grid nor reduce Scotland's fuel bills but its good fun. Also now building a wind generator. Next plan is to harness the dog up to some kind of energy tapping machine.

Two things are coming clear even at this early stage of the study. One is that we myeloma patients do seem to attend lots of clinics. In my case I go to Haematology, Diabetes, Clinical Oncology, Orthodpaedics and am also part of a small group being monitored by the hospital dentist because of the possible negative effect of my Zometa ( bone support drug) on bone formation in the jaw etc. Quite apart from dealing with the myeloma, its a time consuming business and the demands of the study will emphasise that. The other is how many businesses in the medical world have contacted me by spam email since I put the blog up. What's a bit concerning is that even Patientline ( hospital bedside TVs and phones firm) have software which seems to have trawled my address book for forwarding addresses urging all to buy into their business. I'll need to check my security software.

Monday, 12 March 2007

1st Four day block

That's the first four day block of steroids and lenalidomide and things are good. Blood sugars roller coastering but getting them under control. Sleeping better than I've done in the past on steroids so hopeful this is the pattern for the future. What helps I think is that as an early riser I can take the steroids early in the day and wear off some of the later effects. I'm also using an exercise bike as I get my pinned leg back in shape so that maybe helps too.

Main problem is the medics have nothing to help me recover from the defeat of Scotland by the Irish rugby team at the weekend or the draw of my favourite Brechin City Football team. So there are limits to modern medicine after all.

Saturday, 10 March 2007

Early days

As anticipated after even one day on the steroids my blood sugars jumped up from my very stable 6/7 to almost 16. This has happened any time I've been on steroids but the advantage I have now is that as I'm insulin dependent I can control that through dosage changes and hope not to have some of the effects I had the last few times. The bad news for my wife is that the pile of ironing left out to see me through the night remains undone as I slept straight through! This might in part be because one benefit of the steroids is that they have helped ease the pain/soreness I am still having from the pinning of my leg done just over two weeks ago. So every cloud.....

Thursday, 8 March 2007

Start of the Trial

Today is my first day in the Lenalidomide( Revlimid) Trial. But even before I got to the point in the day where I actually began my involvement, it had been a bit eventful. As well as starting my Lenalidomide I've also had my monthly Zometa ( Bone support drug) and my IGG infusion to support my immune system. My main problem- as some of you already know - is that I'm very difficult to canulate and it took six attempts and three nurses before the canula was in. All the nurses involved are very good at canulating but having had so much chemotherapy my veins do present a real challenge even for them- enough for the suggestion to be made that I might need to think about having a Hickman line again. I really don't want another line- I've already had three and all were removed for infection reasons and so we'll need to explore other possibilities. I do feel though like a one man drain on NHS resources with so many nurses involved.

In terms of the Lenalidomide trial I now know that in each cycle I'll be taking the Lenalidomide every day for 21 days and will be taking high doses of dexamethasone ( steroids) on days 1-4; days 9-12; and days 17-20. My main concern is not so much with the Lenalidomide but with the steroids. I'm now diabetic ( since April of last year) and that can maybe be put down to the steroids I was taking last year tipping me over the edge ( diabetes does run in my family) and I'm now insulin dependent. So one issue for me to watch out for is the effect of the steroids on my blood sugar levels. An other concern is of course one that all myeloma patients know about- the need to stand beside an open fridge door to feed the ravenous appetite the steroids bring on. And because my past experience is one where I know I'll have bouts of high energy- this may explain why my wife has left out a flask of tea and a pile of ironing to see me through the night.

Right- I now declare this trial launched and I'm off to have my first lenalidomide pill.

Wednesday, 7 March 2007

Less serious before the trial starts

And for those of you who have already asked whether the dog really has a trailer..... The serious side of all this though is just how much will the Lenalidomide let me do normal things like getting out on my bike. We'll find out soon enough!

Past history

To those of you intending to follow my blog (and many thanks to those who have already contacted me- that was quick!!)- it might be useful to have some more medical info about my myeloma journey and what went before my involvement in the Lenalidomide study. When I was still working I did a fair bit of travelling and with the help of my hospital created a website that could be useful to medical folks elsewhere when I was working- generally abroad. I can't travel quite as much just now ( understatement!) but have kept the site pretty much up to date out of habit. You can see it at . Just gives a bit more detail about how myeloma has gone for me. One thing you quickly learn from other myeloma patients is just how differently the condition expresses itself in different people.

Right - I'm off to worry the neighbours by cleaning my mountain bike in anticipation of getting back on it.

Tuesday, 6 March 2007

About to start the Lenalidomide (Revlimid) Trial

All being well, on Thursday I will finally start my involvement in the Lenalidomide ( Revlimid) Drug Trial. I find it interesting that though I know I need to do this and that there might be very few options left for me, there is a slight ( very slight I should add!!)bit of reluctance that I'll be starting on a whole new therapy once again. I've already had C-Vadd, a stem cell transplant, been on Thalidomide, had Velcade and was latterly on an Idarubycin( check the spelling Stewart!) mix. The wee bit of reluctance is simply that- as I'm currently not on any therapy- I actually feel remarkably well. As many myeloma patients say- its sometimes the treatment that's harder work than the condition. However, any reluctance I might have is tempered by the fact that I'd rather stay around a bit longer and I have quite a few things still to do on my wish list as well as spending more time with family and friends. I don't have the old boat or Range Rover I spoke about in " You've got fleas" but I do manage to keep the risk level up and keep my neighbours worried by getting out on my mountain bike and have also now invested in a trailer to tow our old dog along with me. And they said eccentricity was dead!

My plan in this blog/diary is to keep a record of how I feel going through the Lenalidomide trial and what effects it has on me and my family- I've always been keen to include the effects that drugs have not just on me but also on my family as they are influenced just as much as I am by what the various drugs do to me. Even the dog gets included here- if I don't feel so good- less walks for the dog and no trailer rides!

If you'd like to get back to me for any reason then just email Stewart .

More to follow after I begin the treatment on Thursday.