That's it!- been out on my bike at long last and all OK. I can feel the pin in my leg aching a bit but nothing of a problem. So hope to build up to more cycling and getting a bit more exercise. I can use the next few days before I start my new cycle on the lenalidomide to get some cycling in.
If anybody knows anything about solar panels( the photovoltaic ones) I wouldn't mind being able to ask some advice. asquith48@blueyonder.co.uk
Monday, 30 April 2007
Drug free and solar panels
Not a lot to say- now in the drug free week and all OK. Minor issue at end of week with lots of tiny " blood blisters" mainly on my arms- indicative of maybe having low platelets according to research nurse so we'll keep an eye on them.
Given that I had no steroids last week and now no revlimid/Lenalidomidi until Thursday- feeling pretty good. Today is a big day- about to see how I get on on the bike as I intend to go for a short leg testing trial ride.
Other main issue- had to take down my wind generator- too much vibration on the wall and noise when it was very windy so I'm going down the solar panel route. What I don't understand is why Maureen my research nurse at the Western went white when I told her I'd been up on the roof dismantling the genherator and securing the solar panels!!
Given that I had no steroids last week and now no revlimid/Lenalidomidi until Thursday- feeling pretty good. Today is a big day- about to see how I get on on the bike as I intend to go for a short leg testing trial ride.
Other main issue- had to take down my wind generator- too much vibration on the wall and noise when it was very windy so I'm going down the solar panel route. What I don't understand is why Maureen my research nurse at the Western went white when I told her I'd been up on the roof dismantling the genherator and securing the solar panels!!
Thursday, 26 April 2007
Paraprotein result
Just heard that my recent paraprotein result is still 7. You'll recall that after only one cycle it dropped significantly from 20 to 7. The paraprotein test done last week was two weeks in advance of when it would normally be done for the study so no disapointment( though it would have been good to see it falling again!) as we might get a more accurate statement next week when I'm back for the monitoring at clinic.
Gas at a low peep, xmas lunch and security guards
Now in the drug free week of the cycle. As I had the steroid dose reduced its also meant that the past few days have been steroid free and means there will be no big crash tomorrow or the day after. So a week free of things to deal with. However, haven't got off quite scot free as I've had a chest infection for a couple of days now - did wonder why I was sleeping 8 hours or so then sleeping through the day - but its being dealt with by the trusty anti biotics. I have a supply at home as we know I need to start them quickly without having to go to hospital or the doctors- quick phone call or email to confirm starting them is usually enough. But my gas has certainly been at a low peep for a couple of days and antibiotics tend to make feel a bit low sometimes as well as queasy.
Three of us met for Xmas lunch- been trying since before Xmas to make it. One of the others is also a myeloma patient and its always difficult not to try to catch up and compare notes. Means though that the third member of the xmas festivities is well versed and well aware of myeloma and its implications. There 's something delinquent and pleasurable about having xmas lunch in April.
Also been working through the process for getting my car from Motability. Part of the process involves taking a form to DWP for certification etc. This involved today going to the Job Centre( why the job centre?). Although job centres are much better equipped and much more user friendly there is still an edge to them that makes them a bit unpleasant for all concerned. Even before I was allowed in I had to let two security men know why I was there. Once in there were more security guys walking about and in one case one of them went to stand "meaningfully" beside one guy disagreeing with a staff member. Really can't be much fun for either staff or clients working in such conditions. It also occurred to me though that as there are now no behind screen staff- its all open plan- the issue of staff security must be a consdieration. Bit depressing though.
Three of us met for Xmas lunch- been trying since before Xmas to make it. One of the others is also a myeloma patient and its always difficult not to try to catch up and compare notes. Means though that the third member of the xmas festivities is well versed and well aware of myeloma and its implications. There 's something delinquent and pleasurable about having xmas lunch in April.
Also been working through the process for getting my car from Motability. Part of the process involves taking a form to DWP for certification etc. This involved today going to the Job Centre( why the job centre?). Although job centres are much better equipped and much more user friendly there is still an edge to them that makes them a bit unpleasant for all concerned. Even before I was allowed in I had to let two security men know why I was there. Once in there were more security guys walking about and in one case one of them went to stand "meaningfully" beside one guy disagreeing with a staff member. Really can't be much fun for either staff or clients working in such conditions. It also occurred to me though that as there are now no behind screen staff- its all open plan- the issue of staff security must be a consdieration. Bit depressing though.
Monday, 23 April 2007
"Yew trees and Steroids-more good news".
As some of you know, Elspeth my wife was treated for breast cancer and she too was/is involved in a drug trial. She was given Taxitere in addition to her other chemotherapy, radiotherapy and surgery. As we understand it, Taxitere is derived from the yew tree. To cut a long story short - we were back at the WGH( this time for Elspeth!) on Friday as part of the ongoing trial monitoring and she has been told she no longer needs to be monitored as she is as clear as anyone can be. Great news and another box off the checklist. She is still taking Tamoxifen but that is also to be reviewed shortly. Given she/we had a scare in January about possible return of the cancer this is great news.
In terms of the lenalidomide trial, decision made- even before I asked about it, that I remove one of the four day blocks of steroids from my 2nd cycle. This is all within the protocols of the study though as I understand it once there has been a dose reduction, it can't be increased again. Given the very positive result from the first cycle I have to confess that reducing the steroid dose is pretty welcome given what it was doing to my BMs etc/. The crash days were getting harder to recover from and also getting harder to keep my BMs down despite additional insulin dosage.
Great weekend in the Highlands and made it to the top of Cairn Gorm ( by the mountain train I hasten to add !). Also went to Perth to see the football -St Johnstone v Queen of the South. So again- whatever else- the lenalidomide hasn't stopped me getting out and about.
In terms of the lenalidomide trial, decision made- even before I asked about it, that I remove one of the four day blocks of steroids from my 2nd cycle. This is all within the protocols of the study though as I understand it once there has been a dose reduction, it can't be increased again. Given the very positive result from the first cycle I have to confess that reducing the steroid dose is pretty welcome given what it was doing to my BMs etc/. The crash days were getting harder to recover from and also getting harder to keep my BMs down despite additional insulin dosage.
Great weekend in the Highlands and made it to the top of Cairn Gorm ( by the mountain train I hasten to add !). Also went to Perth to see the football -St Johnstone v Queen of the South. So again- whatever else- the lenalidomide hasn't stopped me getting out and about.
Friday, 20 April 2007
Crash day and viaducts
Yesterday was a real crash day- the second day off the steroids and not unexpected. But I had two hospital appointments so again got very very tired. By the end of the day my battery was really empty and I could hardly speak. I'm writing this the next day at 6 am and already feeling much better and on the way up again.
First appointment was at Ward 5 for a review of my bloods etc for the Lenalidomide study. Again all is looking good and whatever else is happening I do seem to be tolerating it all pretty well. Even the research nurse was as excited as I am about my paraprotein results so another extra paraprotein was taken yesterday to see if it continues to come down at a rapid rate of knots. The issue of whether my Dex levels might be reduced was also raised and that is to be discussed with Huw my consultant- might be that I don't in any case need such high levels and given effect on my blood sugars might be good to reduce them a bit.
The other appointment was at Clinical Oncology where they are keeping an eye on the lesions in my arms and legs. In short, radiotherapy has helped the pain in my leg but the actual pin insertion surgery itself still giving me a bit of a problem. Also- CO has been told that my left wrist might also need plating or pinning at some time and so is being monitored by orthopaedics- again impressed by how my care is all " joined" up across departments and hospitals.
You all know how much I'm looking forward to getting on the TGV to the South of France- on my wish list. Also on the wish list is to see the Millau Viaduct. We've just discovered the Viaduct is only an hour from where we will be staying so a trip is on the books - great stuff! You can see it at http://en.wikipedia.org/wiki/Image:Wiadukt_Millau.jpg and more info at http://en.wikipedia.org/wiki/Millau_Viaduct#Description
OK- its not the South of France but we are away to a caravan in the Highlands this weekend- and looking forward to it as much as the TGV! So Blog silence for a few days!
First appointment was at Ward 5 for a review of my bloods etc for the Lenalidomide study. Again all is looking good and whatever else is happening I do seem to be tolerating it all pretty well. Even the research nurse was as excited as I am about my paraprotein results so another extra paraprotein was taken yesterday to see if it continues to come down at a rapid rate of knots. The issue of whether my Dex levels might be reduced was also raised and that is to be discussed with Huw my consultant- might be that I don't in any case need such high levels and given effect on my blood sugars might be good to reduce them a bit.
The other appointment was at Clinical Oncology where they are keeping an eye on the lesions in my arms and legs. In short, radiotherapy has helped the pain in my leg but the actual pin insertion surgery itself still giving me a bit of a problem. Also- CO has been told that my left wrist might also need plating or pinning at some time and so is being monitored by orthopaedics- again impressed by how my care is all " joined" up across departments and hospitals.
You all know how much I'm looking forward to getting on the TGV to the South of France- on my wish list. Also on the wish list is to see the Millau Viaduct. We've just discovered the Viaduct is only an hour from where we will be staying so a trip is on the books - great stuff! You can see it at http://en.wikipedia.org/wiki/Image:Wiadukt_Millau.jpg and more info at http://en.wikipedia.org/wiki/Millau_Viaduct#Description
OK- its not the South of France but we are away to a caravan in the Highlands this weekend- and looking forward to it as much as the TGV! So Blog silence for a few days!
Tuesday, 17 April 2007
Teeth and tiredness and bikes
Better news at the WGH Dentist- less concern about the healing of my tooth socket and so less concern about things like " osteonecrosis" -so hopefully we can eventually cross off the checklist of things to keep an eye on. Another review in a month but all looking much better.
Been very, very tired today and kept falling asleep and this is me on steroids! Discovered my blood sugars were away up again- at a high 22- and this despite giving myself even more insulin. I guess there is an accumulative effect of the Dexamethasone by the end of each 4 day block. But I might ask if- as other studies are showing- whether a reduced dose of Dex might be a possibility. The baseline however is that I don't want to do anything to interfere with what seems to be positive effects from the Lenalidomide. I have a blood monitoring session on Thursday so might raise it then. Also be good to have some sense of how others are doing on the trial.
Not been on my bike yet- left leg still not healed properly from the insertion of the pin. Maybe by the weekend I might get out on it. Almost there and its a bit frustrating not to have been able to cycle in the good weather we are having here.
Been very, very tired today and kept falling asleep and this is me on steroids! Discovered my blood sugars were away up again- at a high 22- and this despite giving myself even more insulin. I guess there is an accumulative effect of the Dexamethasone by the end of each 4 day block. But I might ask if- as other studies are showing- whether a reduced dose of Dex might be a possibility. The baseline however is that I don't want to do anything to interfere with what seems to be positive effects from the Lenalidomide. I have a blood monitoring session on Thursday so might raise it then. Also be good to have some sense of how others are doing on the trial.
Not been on my bike yet- left leg still not healed properly from the insertion of the pin. Maybe by the weekend I might get out on it. Almost there and its a bit frustrating not to have been able to cycle in the good weather we are having here.
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