Thursday, 29 May 2008

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.


Don said...

Sounds like the puggle point rose up to get you! Sure sorry to hear that.

You're right about the neutrophils - on my last results sheet the reference range shows 1.7 to 7.0.

I'm glad they reduced the thalidomide. I read somewhere that the efficacy of thal is not strongly related to dosage, but side effects are! But the MPT treatment regimen is very widely used and there is a lot of information about it that your docs can research if they need to.

So wonderful that your proteins are returning to a normal range! Go Stewart!

Don said...

By the way, I wish the Scottish Medicine Consortium had seen this press release by the International Myeloma Foundation before they made their Revlimid ruling.