Wednesday June 29th 2011 - 180 day follow-up visit

Today we received the long awaited results from my 180 day check where I had blood tests, 24hr urine and a bone marrow biopsy. Of course Kristy was able to check them early so we knew I was now in complete remission, which is better than at 100 days when I was in 'good partial remission'. I can now stop taking my prophylactic meds and may or may not take a low dose chemo drug in the future. This will be one of the questions I'll ask Dr Richardson in Boston. Normally someone in my position would take Revlimid to prolong remission but this is metabolized through the kidneys and as mine are affected by myeloma it may not be a good idea, we'll see what he says.  Also, since I'm in complete remission, that would be another reason we could potentially postpone taking Revlimid at this time. In the future I will be having blood checks every month and cancer marker checks every three months for the rest of my life. Blood work today was encouraging: hemoglobin 12.5, wbc 5.1, platelets 233 and creatinine 1.61.
So that's about it. I'm in remission!  The statistics say that on average someone with Myeloma stays in remission for 5-6 years. I have a chromosomal abnormality which means that average stats for me are not that good. Of course statistics are by definition immediately out of date and group all kinds of people together. I am hoping  to help make those stats a little better.
So this blog should get quiet for some time...a long time hopefully, nothing to report will be nice. The last year has been an interesting one. Thank you to all the people who have helped us along the way, it would have been so much more difficult without your help. My experience of cancer so far has mostly been highlighted by good people, from my doctors to my friends and family... with a little sickness thrown in. So that's not such a bad deal.

Friday June 24th 2011

I went in to the clinic on Tuesday to have a strep test and a cbc (basic blood test), the reason being I have a sore throat which is a little concerning. Strep was negative and counts were good: Hemoglobin 11.7 Platelets 195 and WBC 5.4. So it looks like a simple cough/cold/sore throat. I also moved my 180 follow up meeting to next week.

6 Months Checkup - June 7th 2011.

James & I on a family outing to see Thomas.

I had my 180 day check up at the BMT clinic at the Westwood campus.  I was able to do everything there without going up to the main KU hospital which was great. First job of the day drop off my 24hr urine bottles (yes I'm a 2 bottle man). Then down to X-ray for 40 minutes or so for a full skeletal survey. Then blood work at the Lab. By this time I was so ahead of my schedule we went to the coffee shop to kill some time and some oatmeal raisin cookies! The 'we' today is my Dad and I, he is visiting from Ireland at the moment. It was nice to show him where I've been spending my time over the last while. While we were waiting around with our coffees I got the results of the X-rays (pretty fast!) and nothing has changed since my 3 months check which is the news I was hoping for. Also blood work showed: Hemoglobin 11.4, WBC 4.3, Platelets 186 and Creatinine 1.73, all great news. The wbc is a little low but nothing to be too concerned about at the moment as all the other numbers are good. Numbers will fluctuate a little, and as long as all the numbers aren't going down it is just the natural ebb and flow of my body recuperating.
Next was the bone marrow biopsy which was fine, it's my 4th I think and in case anyone has to have one (and I hope you never do) they do not hurt that much. I had heard stories of pain and suffering on a grand scale and in all four cases this did not happen. I've had more painful dental work.
The results from the 24hr Urine and the biopsy will trickle in over the next week and I will get the official results on June 21st when I meet with a doc to discuss the full results.
One more encouraging result I got today was that in one of the blood tests my kappa light chains (cancer marker) were in the normal range for the first time which is amazing! To give you an idea of how things have changed when I was diagnosed my 'score' was 397.5, at 100 days post transplant I was 2.7 and now I'm 1.5 and to be in the 'normal' range you have to be under 1.9. So as I said amazing news and interesting that there has been an improvement from 100 to 180 days.
Generally I am feeling tired, I'm pretty sure the weather/heat has a lot to do with this. I'm still able to workout, but not as hard as I would like. But given some patience I'll get there.