The best laid plans o' mice and men........

You'll have noticed the absence of blog entries for a few days now. There I was in my last entry waxing eloquently about how well I thought the second cycle was going and then it hit me! The day after I finished week one of cycle two ( which involved the melphalan, prednisolone and Thalidomide) I really crashed and felt very unwell and extremely tired. To cut a long story short this got worse and I slept around the clock and could hardly walk into our garden. On the Sunday I also developed a temperature and it was off to hospital again where I stayed for another three days. Usual scenario- this involved IV antibiotics and also the decision to reduce the thalidomide dose from 100mg to the original 50 mg. It may be that I'm one of those who don't tolerate thalidomide as well as the treatment regimne demands. So I'm back on the same level of thalidomide as in the first cycle and also with more antibiotics as I seem to have another chest infection or " basal crackles" as my gp note puts it.

I'm still pretty tired but one of the more difficult things about my hospital stays is that ( as you all know) I am very difficult to canulate and this hospital stay produced some records. It took over 3 hours to get a canula in and involved 12 attempts- my veins have had enough I think.

I'm home- as you'll gather but still pretty weak and having to take it easy until I get my strength back. What's also interesting is the difference between hospital wards in terms of reactions to my condition. Ward 8 at the WGH is where I usually go but there were no beds. I ended up in Ward 3 in a single room because I was deemed neutropenic( neutrophils at .7- you normal folks have neutrophils I think at 3 0r 4 etc- I hope that's right). Ward 3 nurses were very concerned about the low level of my neutrophils and so I wasn't allowed out of my room at all so for three days lay around, didn't move and quickly got cabin fever. When the haematology doctors came to see me- they were much more relaxed because for them .5 is the threshold where they begin to worry. Interesting the difference between different bits of the hospital and different disciplines. For information my neutrophils were .6 the day I left hospital.

But it seems that despite this being pretty hard work- and more anticipated- the end result is that my paraprotein has actually come down again. Within the first 6 weeks of this regime my paraprotein has dropped from 28 to 14 and now to 10. Quite a good result despite the hard work. So I'm still here and still resisting the odds.

Day 6 cycle 2

Day 6 of cycle 2 and this is clearly much easier than cycle 1 was. Main difference is I think that the prednisolone - whereas it throws my blood sugars all over the place, actually allows me to sleep unlike the Dexamethasone. So I don't have the tiredness to cope with as well as the effect of the drugs. I do still get wobbly about lunch time- had to cancel some lunch time things- and this probably the diabetes and me not yet getting the insulin dose settled as I should. But tomorrow is the last day of week one of cycle 1 in any case and I stop the prednisolone then so that should settle down as well.

Day 5 Cycle 2

Now on day 5 of cycle 2 and certainly seems much better/easier than cycle 1. Remember on cycle 1 I was also on dexamethasone but on cycle 2 no dex and just the prednisolone, melphalan and thalidomide. The prednisolone is still a high dose steroid ( 18 x 5mg tablets in the morning ) but it doesn't seem to have the same crash bang wallop effect as the dexamethasone. It does however still throw my blood sugars around and I'm still have difficulty settling on the right doses of insulin. But in general its much easier and I don't have the tiredness and fatigue I think the Dex brought on.

The thalidomide is now up to a 100mg a day but that too seems manageable so all in all, cycle 2 does seem a much better than cycle 1. Here's hoping it also has the same beneficial effect in reducing my paraprotein again.

Shoulder becoming painful again so probably heading down the radiotherapy route for a zap or two there. Interesting though that I am now hardly aware of the plate they put in my left arm and the pin they put through my left tibia though I only drive our automatic car now and find it awkward driving with a gear stick and clutch. But then- that's why we got an automatic car!

Elspeth, Day 2 of Cycle 2 and puggle point

What some of you may not know - especially from this self centred blog is that Elspeth my wife had breast cancer just before I was diagnosed. She was successfully treated also at the WGH and has just come off the 5 years of tamoxifen follow up after her surgery and chemotherapy. As part of the trial protocol she is in she now moves to Letrosol as a followup to the tamoxifen- and this lasts for another 3 years. So though the blog gives a statement of where I am, it doesn't fully let you know just what is happening in the house generally. But as I'm the biggest beneficiary of Elspeth's care and love, then its important for me to let you know now and again just where she is.

Yesterday took the prednisolone, melphalan and Thalidomide for day 1 of cycle 2. Prednisolone has the same effect as the Dexamethasone in that my blood sugars immediately went away up ( 19.6) and I had to start taking insulin again. I also took the thalidomide at double the dose of cycle 1. Effect of the thalidomide which I take at night because of the sedative effect is that it probably helped me sleep and I got through to 5.30 before waking up- by my standards on steroids that's not bad.

Day 2- - can't be sure but I don't feel as tired as I did in cycle 1 so I'm hoping that this cycle might be a bit easier- this is where the infection risk ( my white counts are pretty low) becomes a key factor. In any case, the main aim is not necessarily to have a good cycle but to bring down the paraprotein to whatever plateau it reaches. I know we'll never get it down to an unmeasurable point- I'm too realistic for that- but hope the plateau might be below the 14 we reached after just cycle 1.

Also have to recognise that my puggle point is quite low just now- i.e. the point at which I feel puggled or tired. Did a number of jobs today and reached my puggle point a bit earlier than I wanted to. So need to keep an eye on how much I do and need to pace myself a bit more than usual.

Better than expected news!!

Had my review of Cycle 1 today. Bear in mind I have found it pretty hard work. However, the good news is that after one cycle of the thalidomide, melphalan, and prednisolone mix, my paraprotein has dropped from 28 to 14. This was completely unexpected but of course well received in the Asquith household and clearly worth the hassle of the last few weeks. I also acknowledge the last few weeks were made more difficult by having to take Dexamethasone all the way through so hope it might all be a bit easier this time.

Cycle 2 however requires that the thalidomide be cranked up a bit and I move from 50mg to 100mg a day so we'll see what that does. Also it appears that the TMP mix has lowered my neutrophils and that throughout the following cycles I might be even more susceptible than usual to infections etc- so it means the old thermometer will be used a lot and I have to alert friends and visitors to this.

Also my history of treatment has been one in which the first cycle usually has very good results followed by a tailing off of any benefit. So Huw my consultant is hopeful we might have three or so good cycles and then the gain might not be worth the pain. But even if my paraprotein didn't drop anymore, today's result means I already should have longer on planet earth.

But great news and completely unexpected.

PS- if interested in seeing how widespread the list of folks are who read the blog- scroll right to the bottom of the page, you'll see a maroon bar and in that bar will be a box- this is my counter. Click on it and you can see how many folks log in, when , even what kind of screen they use! The interesting one for me though under GEO is the number of countries readers come from.

4th birthday, Polish and British Prime Ministers

As I said it was my 4th anniversary on Monday of my stem cell transplant. Had a nice visit when I was in Ward 8 earlier of some of those from what has come to be known in certain circles as Team Asquith- the nurses and docs who have looked after me. A nice 4th birthday card and also nice cakes. What Team Asquith didn't know is that the cakes they brought were my favourites and what I turn to when I need a treat- Tunnocks Tea Cakes! I was also able to tell them that when I started my first job in Lanarkshire in 1971 on the induction week I was to visit key institutions- some of which were children's homes, old folks homes etc but it also included the Tunnocks Biscuit factory!! Thought I'd died and gone to heaven.

But a pretend 4th birthday and the fact that my tea persons were Polish also set me off on a train of thought. With a name like Asquith I regularly get asked if I'm related to the liberal Prime Minister H.H.Asquith. The answer is no for at least one major reason- my father was not Asquith. The other reason is that I'm not sure if the Asquith who married my mother was from that dynasty though there are rumblings about black sheep etc. But it in part explains why I grew up with an interest in ( which I never understood) the Tennants of the Borders and also the Bonham Carters- particularly Helena Bonham Carter. Tennants and Bonham Carters were related to Asquith through marriage I think. So no Alf Tupper experience suddenly discovering I'm from aristocratic background!( If any of you recall Alf Tupper let me know or if you want to know who Alf Tupper was- drop me a line).

OK so no link to a British Prime Minister. What about Polish Prime Ministers then and why if so?No I'm not related to a Polish Prime Minister ( where is this going Stewart?) but my father was apparently Polish ( which I didn't discover till well into my teens) and I never knew him. But ( here's the link!)when I was about 4 or even younger I remember being shouted to by bakers who worked in the bakery next to our house " Hey Paderewski" and they called me Paderewski whenever I met them. Always wondered about that- very few people in Brechin are called Paderewski!! But of course when I later discovered my father was Polish pieces of the jig saw began to fit. Why I was referred to as Paderewski was easier to understand and also that it wasn't said maliciously at all. Amazing man Paderewski- had a highly successful career as a concert pianist particularly in the states where he was greeted by huge crowds but was also hailed as one of the great international statesman of the interwar era.

So this all came from my pretend 4th birthday and the fact I got my tea and biscuits from two Polish folks. Serious side though is that having been to hospital a lot I've been regularly asked that inevitable question " Is there anything in your medical background which might explain......" The answer is I don't know because I have no knowledge of half of my parentage. Was there any evidence of myeloma related issues from that line for example? The other is that ( and I've always believed that what we do reflects our earlier lives in some way) most of my working life has focused on children's and especially in Eastern and Central Europe. So I've visited or worked in most central or east european countries- with the exception of---- yup you've guessed it- Poland ( Right Sigmund, can you explain that?).

I think I'm away for another lie down!

Scottish Medicine Consortium

Decision announced by the SMC NOT to license Revlimid in Scotland for first line therapy. This is quite a blow because in my own case the first cycle saw my paraprotein drop from 20 to 7 - a remarkable drop. Again it also makes me realise how fortunate I was to get on the trial and get Revlimid- there is no doubt it lengthened my time on planet earth.

PS- I'm now home- a bit early but on a promise not to do too much.

Big Day- 4th Anniversary and SMC decision

At 2 pm today it will be 4 years since my stem cell transplant.

Scottish Medicine Consortium also make a pronouncement today whether they will licence Revlimid/Lenalidomide ( the drug I had on the trial last year). Haven't seen
any statement yet.

Sunday night - quarantined

Signs of shingles now appearring- as they often do when my system goes down. So now quarantined. Not expecting any of you to visit but just in case- you shouldn't come if you are pregnant or not had chickenpox.

Sunday morning

Still in Ward 8 at WGH and looks like I might have `to be in for a few days yet. Had to get the doc last night as my temperature went up to 39.4- a tad on the high side. It appears I may have atypical pneumonia( I don't do typical)- which the medics tell me is a situation where you have pneumonia but few of the symptoms of it. So-that's why its known for old folks as the silent killer.- I have a high temp but no sore chest, no real sweats, no chesty cough etc.

cycle 5- almost didn't make cycle1 !!!!

As you know I have never made it past cycle 5 of any of my chemos. I almost didn't make it past cycle1

Woke up on Thursday morning- last day of cycle 1- with a temperature reaching 39 and also had a bad case of the rigors. I've had these before and if you don't know what they are they're severe shaking of the whole body- not tremors but shaking and trembling from deep within. I think its the body's attempt to reduce the temperature. To cut a long story short- a quick call to Ward 1 at the WGH Edinburgh and within an hour I was on high dose IV anti biotics and then a couple of hours later I was admitted to Ward 8 where I still am ( Saturday night). My concern was that I might not get to continue on treatment but Huw my consultant is confident this is just a blip and that we'll start my cycle 2 a week later.

The good news- though we haven't got the full paraprotein result yet- is that Huw can infer from other biochemistry thingies that it does appear that even after cycle 1 my paraprtein might have down even a small bit- which is after all the name of the game. Probably for that reason- though I won't get the melphalan and prednisolone till next week - I'm to continue taking my dailly thalidomide dose. I wont get home quickly as they'll want to be sure my temp doesn't yoyo( one of the nurses got a reading of 39.2 earlier).
No easy this stuff!

End of Cycle

I'm heading for the end of cycle 1 so time for a review of what this first cycle was like. To remind you- I was already on Dexamethasone ( to address my spine issues) before I started the PMT( Prednisolone, Melphalan and Thalidomide) regime. You aren't allowed to come off Dexamethasone suddenly so for the first cycle I've been taking a tapering amount of Dexamethasone- its meant though that I've had two lots of steroids in the first cycle- and I don't like what steroids do to me. But from Cycle 2 I won't be taking the Dex so hoping its a bit easier. I should also explain that this PMT regime has been referred to by my consultant as " the old man's regime"- i.e. its meant to be a bit easier and so more tolerable for older people. In my case I'm on it because I've already had 5 different types of chemo regime ( C-vad, Velcade, Revlimid, Z-dex and Thalidomide) and of course my stem cell transplant( on May 12th it will be 4 years since my transplant. The idea I think is that my body has had such a chemo hammering that anything too strong might not be too good for me.

I've had all the usual signs of Thalidomide side effects ( a good statement of these is at http://www.cancernews.com/search/fulltext.asp?cat=6&aid=199&Type=all&SearchStr=myeloma&Archives= ) and the main problem has been the extreme tiredness. Having said that for the past couple of days I'm aware of my body picking up and feeling much better so I'm hopeful that the next cycle might be easier- that's the suggestion anyway- that cycle 1 is needed at a lower level of Thalidomide ( 50mgs) to allow the body to adjust and then the medics crank up the dosage- the optimum being I think 200mgs. We'll see.

I've also had the added difficulty of again being thrown into diabetes by the Dex but with the tapering dosage its been very difficult to set a good level of insulin so my blood sugars have been all over the place. I also have to take allopurinol to protect my kidneys and also was given anti sickness drugs. I haven't actually taken any of the anti sickness pills- in fact through the four and a half years of all my treatments- including my stem cell transplant- I think I have only been sick once-been fortunate in that respect.

So in short a bit harder than I expected but now getting ready for cycle 2 which without the Dex should be a bit easier.

Thanks to Megan, Phil and Marie

Congrats and thanks to Marie, Phil and Megan ( that order in the foto) for doing the BUPA Fun Run today in Edinburgh on behalf of Myeloma UK.

Their Justgiving donation site is at www.justgiving.com/megslegs

A 1950s Ferguson!

For those of you who don't know the old Fergusons( the Fergie). Great thing about Harry Ferguson is that he wasn't just building a tractor- he saw the Ferguson as contributing to alleviating world poverty by making available a cheap but efficient cultivation tool. When he invented the three way linkage - the tractor could then take universal fittings for all kinds of tools. etc etc. Interesting- eh?

Ferguson, Ferguson, Ferguson and Ferguson

Great thing about being on steroids is that I have time all night to write my blog. Bad thing though is that I get pretty tired not sleeping and also don't like the changes in face and body shape ( vanity rules OK). But it does mean lots of free time.

Its a Ferguson week- Barry Ferguson now takes Rangers to the UEFA Cup Final. Alex Ferguson now takes Man United to the Champions League Cup Final. And I've been reading more about my favourite tractor ( quick somebody pass me my anorak!)- the classic little grey Ferguson tractor ( thanks for the photo of the 1950s model Steve). I first learnt to drive on a Ferguson in the tattie fields in Angus and when at school worked on farms driving wee fergies and other like machines- explains my addiction also to the old Series 1 Landrovers. The fergies have a very distinct sound and if you want to hear one used as a musical instrument you could listen to Dougie McLean's " Strathmore" which starts with a Ferguson firing up and then providing the rhythm for the rest of the track. My last Ferguson reference is that its the Anne Ferguson where I attend some of my clinics at he Western General in Edinburgh and where many a coffee is drunk when getting the old myeloma body checked over.

Elspeth and I had news of a good friend who is awaiting some cancer related results and we were discussing how in many respects my myeloma is almost no longer an illness- or at least it feels like that. Its become more something simply to deal with as and when things arise- and with myeloma things do arrive quite regularly and at uncertain times. As I've said before- TMTMTM- There's More To Me Than Myeloma- and I try to treat what happens simply as something to be dealt with and with little emotional hassle. The baseline - to put it bluntly- is that unless I get hit by the proverbial bus, the myeloma will kill me and getting to that point means there are some things I'll have to go through. But I've always known what might be coming and as signs get clearer Elspeth and I have planned accordingly- eg getting rid of the bath and having a wet room; having power tools for everything- screwdrivers etc; making sure I can get to the back garden without using the back steps; having an automatic car because of my left leg and arm etc; even stopping climbing ladders!. So there is less an emotional but more a practical response and it does mean that I can forget about the myeloma and also do my other things. The fact that Elspeth also had cancer treatment means and that she too simply carries on being herself of course suits us both well. I've never been one to chase up alternative therapies etc -though I do think my scatty half brained ideas involving solar panels, landrovers and Ferguson tractors are my own form of alternative distraction- because that has always seemed to me to make the cancer /myeloma the focus which I don't want it to be.

Right, I'm off to book accommodation for the Portsoy Traditional Boat Festival in June- went there last year, had a great time and didn't think I'd be here for it this year. But I am!.