Here's where I'm at after 13 days..
Absolutely no cough. Today I had to hack-saw an ignition barrel off a steering column in place. There was no room to get a decent stroke on the saw, so I was sawing away, short strokes, like a mad man for a couple of minutes before I had to stop with fatigue. I think anyone would have been exhausted let alone me. As I sat there regaining my breath I realised that not only was I not coughing, but I was not at all asthmatic. There was not even a hint of a cough. This is unheard of for me in the last couple of years.
No itch. The only time I itch now is either from habit or a genuine non illness related everyday itch that is gone the moment I scratch it. My hands used to feel really good when run under hot water, it would sooth the itchiness and actually gave some pleasure. Now it just feels hot.
No fevers. My temperature is now solidly down at around 36 to 36.5C This is completely normal. Previously it would be up around 37C+ and I had to take paracetamol to reduce the fever. Sometimes it would rise to over 38C and I would get chills and rigor.
No sweating. I no longer sweat profusely for no apparent reason (at the time). I'd always assumed it was the antipyretic (reducing fever) action of the paracetamol. My sense of ambient temperature has returned. I can tell the difference between a hot day and cold one and no longer have to ask people if it's hot or cold because I was sweating at an odd time.
I do have a few problems related to the Adcetris. Left side flank pain remains, however the lower back pain is greatly reduced. This was accentuated by the back injury from a few weeks back.
I get stomach aches sometimes when I've eaten. I'm avoiding certain foods to help with that. It's a lot better than it was in the first week though.
There's a small increase in neuropathy in my toes and fingers, a slightly cold pain and numbness. To be fair most of it appeared prior to the Adcetris and was probably caused by the vinorelbine chemo I had before Christmas.
I'm think that there's also been a slight increase in my tinnitus (ringing in my ears) too. It's too minor an increase to be absolutely sure but the fact that it's started to become noticeable again suggests it has increased. I mentally block it out as it's been with me for years but got considerably worse after a round of cisplatin chemo in Germany in 2008.
Mornings are hard. Everything aches and I generally feel like crap, but by midday I start to perk up and by mid to late afternoon I'm feeling great. That's probably a mix of the prednisone and whatever I've taken for the back pain. Ibuprofen works great but I'm not supposed to take that with low platelets and prednisone, however I do sneak the odd one in.
To be honest I'm extremely surprised (and pleased) to have such amazing results after just one cycle and only two weeks in.
It bodes well for a lasting remission. It's still early days yet but it would appear that this really is a wonder drug in my case.
As of today I've further reduced my prednisone dose to 17.5mg a day as it's apparent that my recent lung problems are not BOOP related. This will help strengthen my immune system, something that's very much needed as one known side effect of adcetris, albeit very remote, is the reactivation of the often fatal PML virus. So the lower the dose the better. However prednisone must be reduced very slowly once at 15mg as my adrenal glands will have atrophied completely and it can take up to a year to reduce back to zero without complications.
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