Saturday, August 21, 2010

1st low dose Chemo

8.20.10  Okay I thought my visit would be a blood test wait for the results then a quick 15 min. chemo then home, 1.5 hrs. Well it turned out to take about 5 hours.
Kristy came with me for my first one and that worked out really well as we had a meeting with another one of 4 BMT (Blood Marrow Transplant) docs. Dr McGurk, he is head of dept and a really nice guy. He also knows Kristy from her day job and was sad to meet her in 'his' dept. We met with him for about an hour we found out because of a DNA test I have a chromosome 13 which doesn't give you any particular illness but in my case having MM brings percentages down by 20% for a good prognosis. And he was looking at a 60% chance of long term remission before, so that comes down to 40%. That having been said all this data is made up of MM patients who are much older than me and the low dose chemo Velcade that they are using now and having better results with doesn't figure into those stats. So the stats don't worry me that much. Getting down the cell level (which I listen a little blankly to) in hard to explain but normally when you get MM the errant plasma attacks two parts of your DNA 'light chains' and 'heavy chains', I have problems only with 'light chains'. Which as luck would have it slightly worse.....statistically.
More information yesterday was that the 6 weeks of low dose chemo we were told to expect is unusually short and standard is 9-12 weeks. So everything is possibly pushed back another 6weeks making the total low dose period 3 months.
So at the end of the day Kristy felt a little discouraged which I can understand, it's hard to look at 40% even though it is most probably inaccurate. It has not discouraged me in the least, I feel at this point like an abnormality in this game/race fight whatever way you want to look at it. I'm younger, fitter and am positive, and that has got to help boost those bloody stats!
So on the drug side effects Dexamethasone, it is a steroid which they mix with an anti nausea, this takes 15 minutes and goes in IV before the Velcade. The Velcade is only a 3ml (Approx.) syringe and is pushed in in about 5 seconds. Dex was supposed to stop me sleeping but I slept till 4.30 - which is only 30 or 45 minutes different from normal which was great! They say that I may have mood swings and a short temper....Kristy can let you know if that happens. With Valcade they said nausea vomiting and neuropathy in hands and feet and sure enough at about 9pm last night my toes were numb. No nausea by I did take an anti nausea pill before sitting down to a wonderful meal at Bob & Mary Lynn's complete with my favorite coconut ice cream - homemade!
Okay one more negative before the positive. MM has attacked my Kidneys which are still only working at about 50%, it has also affected my bones and they have found one of my vertebrae T8 or 9 has a compression fracture. They say this is pretty typical in MM suffers but also could not conclusively  connect it to MM so I could have done this along while ago (maybe years). Right now it give little of no pain so he said no lifting heavy weights and keep an eye on it.
Positive now: This morning when I woke up having slept 5.5 hours which is longer that the usual 3 then pee, all though the night. I checked my resting HR which was 60 way down from the 82 it has been and the neuropathy in my toes has disappeared! So hopefully the drugs are having some effect on my kidneys too, my Creatinine level (which shows kidney function) is 1.8 and back in Feb. was .8 (which is a normal reading and something I really hope I see .8 again. So we'll see!
A quick note to all who have contacted me and are sending good thoughts and prayers my way. Thank you, you have no idea how much it helps.

4 comments:

  1. Brian,

    You are right to ignore the statistics. The pool of people included is so broad it almost becomes meaningless.

    You also know your body far better than the average person. Heck, you taught me about the importance of measuring my heart rate to improve my running.

    Listen to your body and it will tell you what it needs. It may get harder before it gets better, but it will get better.

    The coffee is on me next time.

    All the best.

    Keith

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  2. Brian,
    We're still shooting out prayers for you and the family - recovery, positive attitudes, few side effects, emotional health.

    Love your blog - hate the reason for it.

    Here is yet another reason I retired. Call anytime for help with the kids, errands, or just need some quiet time or exercise breaks.
    Cathy

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  3. Praying for you and your family, Brian! So glad we serve a God that is loving and all-powerful... I truly believe He can cure both you and Travis! Stay positive and keep your hope in God!

    Jaclyn

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  4. You have a great attitude. Keep up the good work and dont let things get you down. Please let us know if we can help, we are right down the street!

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