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Bonjour!!

Well we made it- we are now in the South of France having travelled on the TGV and also having already been to the Millau bridge. TGV a bit disappointing as we seemed to be on an older one- bit threadbare carpets etc. A trick to get a seat on the TGV- make your spots obvious!!(though they are now disappearring). The Millau Bridge is stunning- a real mixture of function and design and well worth the visit.

We are in a small sea side town about 30 km from Montpellier- lovely place and suits us better than Montpellier itself.

So again- for you lenalidomide takers- whatever else it does to you it needn't stop you getting out and about. On my return my next job is to install our solar panel kit at a great saving from a professional installation.

If anyone from Celgene reads this- what is the reaction to the lenalidomide symptomatic of? asquith48@blueyonder.co.uk

a bientot

Spot check and a rash decision

Had a spot check on the rash I have. The bad news is that the spots I have from the lenalidomide ( we think) are more extensive than even yesterday but since tonight is my last of the 21 days followed by what is now a two week drug free spell, I hope they will vanish by the time I start ( or should) start cycle 4. I would normally have a week drug free but since we are to be on holiday this is now two weeks. You'll gather the good news is that we are going on holiday on Saturday and I'm looking forward to the TGV as much as the holiday ( boys and their toys according to Ward 5 nurses!).

The really good news is that my paraprotein has dropped again to 5 so in 2.5 months it has dropped from 20 down to 5- a pretty good result and explains why I don't want to be booted off the drug trial.

Also been at the WGH Dentist today who is keeping an eye on this tooth issue- still got a bit of exposed bone and also a tender bit where the bone underneath the gum is pushing against the skin. But general optimisim its just a slow healing issue and not a case of osteonecrosis. Speaking of which there is a new set of protocols for the use of bisphosphanates from the Mayo Clinic- a useful article and one you can see at- http://www.mayoclinicproceedings.com/inside.asp?AID=4344&UID

On another medical front, you will know I'm permanently on warfarin and also that I am difficult to get blood from. I've explored the use of INR monitors ( bit like blood sugar monitors) and discussed with my health practice. Upshot is that they are to buy a monitor so that they can take INR readings from difficult folks like me just from a finger drop of blood and also without sending it away to a lab. The result is also immediate so warfarin dosage can be sorted out there and then. Seems to me to be the way to go and surely must be more cost effective than the current system which involves me going in to the practice to give blood, the nurses struggling to get blood from me, the blood being sent for analysis, me calling in later for the result, a doctor having to read my file etc. Surely a great saving in time, money and frustration!

Right , getting ready for France.
A bientot.

Radio silence

Apologies for the wee period of radio silence. As I said I wasn't feeling too well last week and had to cancel a couple of things. My steroid dose was reduced again and the benefit is that I feel much better just now. Also means that I have time to fully recover from this cycle before we go on holiday to France on Saturday morning. I'm assuming we are going though I'm going in for a once over to the Western tomorrow morning to make sure all is OK.

My usual strategy when I don't feel too good is to do some physical work and this weekend Chris my son and I replaced the old lead water tank in our house for a super duper plastic one. Don't let anyone convince you that taking out a lead water tank is an easy job! Very heavy.

And when we come back from France my plan is to install a DIY solar panel kit which arrived yesterday. So whatever else, the drug trial hasn't stopped me doing things. My fear with myeloma has always been that it would stop me doing manual work which I like doing- its also the Scot in me- £900 for a diy solar panel kit is a lot cheaper than £3000 for a basic kit professionally installed!

No idea if my paraprotein has dropped any more yet and it may be that we take a reading tomorrow. One concern at the back of my mind is that in all the four different chemotherapies I've had I've never made it to the 5th cycle. I'm beginning to wonder with the recent reaction to the Lenalidomide ( lots of spots) whether I'll make the 5th in this drug trial. We'll see.

MAGIC apology

Apologies to the MAGIC nurses I was meant to be speaking to tomorrow. Been at hospital today and decision made that its probably best if I don't come along to the MAGIC day in Glasgow. Number of reasons- one is I have spots! Spots are probably ( we think) associated with the lenalidomide and apparently if they cover ( which they don't yet) 50% of my body I could be withdrawn from the drug trial. I'm also still very tired and decision also made to down my dosage of dexamethasone again. I was a bit concerned that I was being a real failure on the trial but apparently the heavy regime of steroids is hitting a number of folks. Some of my bloods are a bit lowish -and again if they drop any lower then I might need to stop taking the lenalidomide at least temporarily until I recover ( maybe with the aid of GCSF)

Add to this that I've been having chest pains and my 14 year old dog is walking up hills quicker than I am - suggestion I go back to using a GTN spray. I had an angiogram in December and suggestion then was that I didn't have angina but maybe heart issues were to do with so much chemo and other treatments. Seems again ( after a clear ECG this morning) that same kind of symptoms are back- though we know one of the side effects of lenalidomide is that it can go for the heart a wee bit. So all in all- quite a full day. But we are still going on holiday next week!!

In a spot?

Bit of a problem- I've come out in spots! Over my arms, body and legs. This actually happened at the corresponding stage of my last cycle but we put it down to a possible reaction to antibiotics. But I'm not on antibiotics this time and the spots are more pervasive than the last time- any suggestions in a brown paper envelope please!!

It also puts me in a spot as I'm meant to be giving the patient experience to a group of MAGIC ( Myeloma Advice and Guidance in the Community) Nurses in Glasgow on Friday. Fortunately I have a hospital appointment tomorrow so we can explore it there. In terms of going to speak to the MAGIC Nurses I did wonder how many would stay in the room when I went in. According to the nurses at Ward 5 at the WGH they all try to go for coffee when I come in!! ( they all know how difficult I am to canulate).

In general though I have to say that I am getting a bit tired and it does appear to be taking longer for me to get over the effects of the steroids than previously. It may also of course be the case that the lenalidomide is making me tired as fatigue is of course one of the side effects. So- always difficult to separate out the effects of the lenalidomide, steroids and my diabetes.

Boats and things

Just back from our weekend at Pittenweem- if you haven't been to any of the fishing villages in the East Neuk of Fife- get yourself there. I've always been a sucker for fishing boats and harbours and Pittenweem has working harbour so ideal for folks like me ( who even carries a VHF radio ). We were also rewarded with the sight of an old broad beamed wooden sail boat ( what kind?) which looked as if it was coming into Pittenweem but then decided to turn and head up to Anstruther ( unfortunately under power so the huge red sail came down). We of course had to follow it up the coast and watch it coming in ( a bit precariously given the swell) to Anstruther harbour. Quite a sight with the main mast broader than the men on the boat.

Great to get away but again I seem to be taking longer to recover from the either the effect of the steroids or of the accumulative effect of the lenalidomide( or both). Even on Sunday- six days since my last steroids- still pretty tired and a wee bit weak. But again if the lenalidomide is doing its job then I have no real complaints. But given the timing of our trip to France on the 26th May- getting a wee bit concerned about how I'll be when we are meant to be travelling. But we are going to France!!!

Still crashing

This is the longest post steroid crash I've had and I've felt pretty wobbly today again and with no strength or energy to do anything. Again the difference between fatigue and tiredness comes to mind- and this isn't tiredness! It appears I'm not the only one on the trial one experiencing steroid withdrawal - the dose is after all pretty high and there may be a cumulative effect.

Big Crash

Yesterday was the first day off steroids after my four day block- had my biggest crash yet and by the end of the day could hardly get upstairs to bed. Don't know how much this is the steroids or the diabetes or both but it was certainly a hard day. As you'll all know by now I try to keep physically active but guess I may have to do less as I come off the steroids.
Phew!

Down again, cars and transplants(+ John Martin)

Got my latest paraprotein count and its down again- just down to 6 from 7 but remember the first cycle dropped it dramatically from 20 to 7 so in total so fater two cycles on the lenlidomide that's me down from 20 - 6. Pretty good going. As we all know this isn't a cure but it will hopefully be buying more survival time. All very positive. Be interesting to see whether ( and in which direction) the recent reduction from three four day blocks down to two four day block on dexamethasone will have an effect. Some studies are showing a very positive effect of the lenalidomide with a lesser rather than bigger dose of steroids.

On Wednesday I also get my motability car. You'll recall that my main problems are all down my left side- plate in my left elbow; pin through my tibia and now a bit of concern about another lesion in my left arm. The changing of the clutch and the changing of gears a wee bit problematic so moving to an automatic car will help considerably I hope.

The big event is that on May 12th at 2 pm it will be three years since my stem cell transplant at the WGH. Given that I thought I might not be here on my birthday ( 1st April) this is major event for me and also time again to acknowledge the role played by everyone in my survival- what is clear about myeloma is that treatment is a real team effort with all playing what I think an equal role- the nurses giving me my treatment and struggling to canulate me through four chemotherapy regimes; Liz my transplant coordinator holding it all together on a regular basis and even now becoming a Brechin City supporter; Maureen taking me through the Myeloma IX study and now the Lenalidomide trial; Huw my consultant always there when needed and maiking the key decisions about where we go next; the regular and comforting contact with Brenda the Ward doctor; the care from Helen the WGH dentist who has a special awareness of the myeloma issues and works in close contact with the haematology team; Mr Porter the orthopaedic consultant at the Royal who has seen to my successful plating and pinning surgery; Dr Yuille who organised and monitors my radiatotherapy need etc.; the diabetic clinic who also keep in contact with haematology. Add to this the help from my Health Practice who are kept in close touch with the hospital and now the link with Barbara at the Marie Curie hospice.

This is quite a list of individuals and I have always felt that there has been joined up working. They will I hope forgive my gentle harassment when I want to know what's happening and what's next on my agenda. But in short I owe them a big thanks and without them Brechin City might by now have lost a sizeable proportion of its support!!

+ John Martin- steroid induced insomnia last night but listened to a programme about John - had forgotten what great songs Sold Air ( really 30 years old) and May You Never are.

Counts- diabetic and political, and hornygollochs!!

Counts- diabetic. As usual despite giving myself almost 10 more insulin units my blood sugars have gone up to 20 since I took my dexamethasone(steroids) at 7.30am (when they were 7.6). Pretty dramatic effect and I always know when my counts go up as my vision begins to get fuzzy a bit till the insulin kicks in.

Counts- political. Also a dramatic result with the SNP gaining more seats than any other party though we don't yet know how that translates into government. Could be that the Scottish Nationalits have more seats but can't form a government if they can't persuade others into a coalition. So maybe they've had the negative effect of high counts as well- hope they don't have a political steroid crash. And yes- to "come out" - I voted SNP. And why was it spoiled a bit by such a disaster in the voting process. Donald Dewar the father of Scottish devolutuion once said that devolution was a process, not an event. He must be turning in his grave at last night's embarassing debacle or "burach*" as Brian Taylor the BBC Scotland political editor called it using the more descriptive Gaelic word.

* PS there are some Scottish words I love to say- so satisfying in their expression. One of my other favourites from younger days in Angus was "hornygolloch" for the forkietail insect with lots of legs- I can never remember which. Maybe I'll write the next post in the Scots I used as a child- I've always claimed that at base level English is my second language- ever since the day I was belted at school for using "kirk" instead of "church". (Goodness where did that long held grudge come from!!) Seeing a hornygolloch almost qualifies as an atom of delight because you can use the word!

Clinic and cycle 3

Down at Ward 5 today for my IGG infusion. Despite the difficulties the nurses generally have canulating me, Tracy ( pretty much as usual) managed first time! But she is going off on maternity leave- how could she!! Decision made though that I can stop IGG infusions ( and resume them as needs be) and won't be going back on the zometa ( bone support drug) just yet. And when I do go back on it it will probably be a pill equivalent rather than continue infusions. So no more canulas needed for my treatment- thank goodness.

At clinic in the afternoon and again I will be having less steroids in cycle 3- one "pulse" less ( i.e. one block of four days less). Keen to see what my paraprotein is as it was tested today though takes a couple of days for the result to come through and since its a bank holiday weekend I will have to wait till Tuesday. Hopefully its gone down again.

One of my friends- who was at the xmas lunch last week is now also going on the lenalidomide trial- be interesting to compare notes and I might get him ( Fred) to write a bit in the blog.

So cycle 3 starts tomorrow with the steroids and having felt so well over the past week or so with no drugs its quite a thought to start again- but made easier in the knowledge I have less steroids to take.

As you know I also have to take warfarin for the rest of my life and just as I'm difficult to canulate I'm also quite difficult to get blood for my INR - the test which determines warfarin dosage. So I've been exploring again ( I did this last year) the possibility of buying an INR blood monitor- works on the same principle as a blood sugar monitor- just needs a drop of blood rather than ( as Hancock would say) an "armful" for lab testing. Checked with folks at WGH about its acceptability and also discussing with my GP as my practice would need to support me. But the idea of just calling in with a result rather than having to go to give blood; having to go through the difficulty of giving blood, waiting for the result; calling in for the result and involving both doctor and nurses really quite appeals. Unfortunately whereas my blood sugar monitors cost about £12, INR monitors cost about £350 just now. Mmmm. You can see more about the INR monitors at www.coaguchek.co.uk

The big issue up here in ZScotland is of course whether we will wake up in the morning with the Scottish National Party in power and Alex Salmod as First MInister. Can't believe how the BBC have ignored this possibility and the long term implications it might have for the UK.

Clinic and cycle 3

Down at Ward 5 today for my IGG infusion. Despite the difficulties the nurses generally have canulating me, Tracy ( pretty much as usual) managed first time! But she is going off on maternity leave- how could she!! Decision made though that I can stop IGG infusions ( and resume them as needs be) and won't be going back on the zometa ( bone support drug) just yet. And when I do go back on it it will probably be a pill equivalent rather than continue infusions. So no more canulas needed for my treatment- thank goodness.

At clinic in the afternoon and again I will be having less steroids in cycle 3- one "pulse" less ( i.e. one block of four days less). Keen to see what my paraprotein is as it was tested today though takes a couple of days for the result to come through and since its a bank holiday weekend I will have to wait till Tuesday. Hopefully its gone down again.

One of my friends- who was at the xmas lunch last week is now also going on the lenalidomide trial- be interesting to compare notes and I might get hime ( Fred) to write a bit in the blog.

So cycle 3 starts tomorrow with the steroids and having felt so well over the past week or so with no drugs its quite a thought to start again- but made easier in the knowledge I have less steroids to take.

As you know I also have to take warfarin for the rest of my life and just as I'm difficult to canulate I'm also quite difficult to get blood for my INR - the test which determines warfarin dosage. So I've been exploring again ( I did this last year) the possibility of buying an INR blood monitor- works on the same principle as a blood sugar monitor- just needs a drop of blood rather than ( as Han cock would say) an armful for lab testing. Checked with folks at WGH about its acceptability and also discussing with my GP as my practice would need to support me. But the idea of just calling in with a result rather than having to go to give blood; having to go through the difficulty of giving blood, waiting for the result; calling in for the result and involving both doctor and nurses really quite appeals. Unfortunately whereas my blood sugar monitors cost about £12, INR monitors cost about £350 just now. Mmmm. You can see more about the INR monitors at www.coaguchek.co.uk

The big issue tonight thopugh is whether we will wake up in Scotland with the SNP in power and Alexd