Wednesday, 30 April 2008

Past 4.5 years and today

Suggestion made that I let you see my medical record since diagnosis( 4.5 years ago) to see the kind of things myeloma does/can do. But bear in mind - as all myeloma patients will tell you- the experience is very individual and different for everyone of us. Go to which is the link site from my medi tag - if I need help wherever I am the medics can have a look to see my history etc.

Todays little bit of excitement is confirmation ( its OK Helen - just reporting not worrying!!) that I have a very wee touch of osteonecrosis in my jaw with bone fragments appearring. This is due again not to the myeloma( interesting how many of my ailments have been side effects of treatment - my clots when on thalidomide before, my diabetes due to steroids, rather than direct effects of my condition) but the treatment of bone problems by bisphosphanate drugs ( bone support drugs). In my case and that of others the main culprit appears to be the drug Zometa which I had since the outset. I'm now on a different drug because of the difficulty the nurses have in canulating me ( bad veins after all the chemo). So- no surprise as we were heading slowly down the osteo thingy route but in my case there are no symptoms other than wee bits of bone. So on the scale of things I can forget but keep a watching brief on it.

For those of you of a nervous disposition I need to let you know I have to borrow a ladder to fix my solar panel!

Back on the Cycle and catching up

Right a quick update now that I'm started Cycle 1 of the Thalidomide, Melphalan, and Prednisolone mix (TMP)with a dose of Dexamethasone (steroids) being reduced till I stop that. Next cycle I'll have no Dex and just the TMP.

After no treatment for 6 months its been quite an adjustment and as predicted- the Dex has thrown me immediately back into insulin dependent diabetes( amazing how quickly that happens) and also only letting me sleep for two or three hours some nights- this has been a feature of my Dex treatment- the steroids really do keep me going. ( apologies to those who receive my regular 3 am emails!). Main issue though is extreme tiredness and fatigue- and there is a difference. Tiredness is just the feeling of being tired. Fatigue is the result of the chemical effect on my muscles so a bit weak in the old legs and arms and can't do too much at times. But I know that as I get more into the Thalidomide side of things this should ease off. Also developed a wee tremor in my fingers ( makes my guitar and smallpipes playing a bit interesting!)- all perfectly normal for Thalidomide use.

I also had to have radiotherapy in the week after my 60th birthday party as the myeloma has damaged my sacrum a bit more and I also had to have some radiotherapy on my shoulder earlier. Its amazing how blaze you can get because on the way to get radiotherapy on my sacrum I turned a corner in the car and cracked a rib it appears- I think its the 3rd time this has happened- and again linked to the myeloma effect on the bones.

But the main thing is- I'm still here! and though I'm on my 6th regime of chemo after my transplant ( on the 12th May it will be 4 years since my stem cell transplant, my quality of life is still very, very good and I remain active and still managing some work though intending to do less. Those of you who read my blog before will be pleased to know though that I climb ladders less- and that my solar panels now meet all our water heating needs!( a great buy at £1000).

So- that's where I am just now. As many of you know my history of my various treatments is that I aim for 6 cycles but have never ever made 6- I've always responded well initially but then the myeloma hits back and on every chemo regime I've been on I've never made it passed the 5th cycle. So we'll see this time!

Monday, 28 April 2008

Starting Blog again

Hi All
After a spell of no treatment after the Lenalidomide trial I've decided to start my blog again. I'm now back on new treatment and though not the Lenalidomide I thought you might like to hear about my post lenalidomide experiences and musings. Or not!

I had about 6 months of no treatment and enjoyed that though the myeloma did as well and my paraprotein is now at 28 and I've had more bone issues to deal with involving numbness in my nether regions. I'm now on melphalan, thalidomide and prednisolone as we try to find new means of keeping me here. It was my 60 th birthday on 1st April( yes April Fool's day explains a lot!)and as you know at one time thought I wouldn't make it. But I've now qualified for my winter fuel allowance and intend to make full use of it ( see how low my ambitions are !) The day of my birthday party was a wee bit scary as I had to go in for an immediate scan amidst fears of spinal chord compressions from the myeloma- fortunately the scan showed no spinal chord compression but there is myeloma damage to my sacrum and this was affecting the nerves in that area. Resolved for now by steroids and then back on to the new chemo regime.

I'm also currently on dexamethasone ( steroids) as well as the prednisolone(steroids) and you all know I think of how they affect me- blogs written at 3 in the morning for example! I've also been thrown back by the steroids into being insulin dependent diabetic and having a bit of trouble getting doses right because of the amount and different steroids taken.
More later.