Just a quick note to say Labs on Wednesday showed my Liver is getting back to normal since I stopped the chemo Thalamid. All my other counts are where I'd expect them to be and my Kappa Light Chain numbers came in today at 2.76 which isn't far off remission! Which is where I'd like to be going into transplant, last month is was 11 and remission is under 1.9 so great news there! My doctors here decided on one more round of Cytoxin and Velcade before NY and hopefully that should tip me into full remission. That's all for now - thank you for the messages of support they are very much appreciated.

6.19.12   So This is a little sooner than I had planned....

Well lots has happened since my last post. I had hoped I would never continue this blog but here we are. I'll need to update the photos as we are all looking a little older - mostly the kids...

So a quickish update. In June last year I planned on 10 years of remission, so I set about making some changes. The kids were starting preschool and parents day out and therefore needing me less, so I decided it was time to even the score on people taking blood from me and signed up for a 6 month Phlebotomy course at Johnson County Community College. I did my clinical experience at Olathe Medical Center (OMC) and got a full time job there starting two days ago....which was all a great plan because I really enjoyed the class, enjoyed sticking needles in people, and got child care sorted...however the cancer was not playing ball. My doctors here, whom I trust completely, encouraged me to seek out other opinions for treatment options, so I went to see doctors in New York and Boston.  I tried to treat it with more chemo and that didn't seem to be working as my cancer markers went up despite doubling then quadrupling Velcade (although Velcade might be slowing down the progression). Revlimid stopped working, Thalidomide was too toxic to my liver, and the jury is out on Cytoxan so far. So anyway, none of these drugs would cure me and eventually they will all stop working. It is hard to quantify how long they would keep me alive but I was going through them quicker than I had hoped and felt I was being painted into a corner. 

So while my kidneys were still able to get me through a Matched Unrelated Donor (MUD) stem cell transplant we decided to go for it. My hesitation has always been the age of our kids (3.5 and 5.5), if I don't survive they would not remember me which is a sad thought...certainly not James, maybe Sophie would remember a little. Anyway, the 2 years I thought I could wait until transplant have disappeared and I found out last Friday that I will be having a T-cell depleted allogeneic stem cell transplant from a MUD on July 22 or 24th at Memorial Sloan Kettering in NYC, which means I will be staying in or around the hospital there for 4 months.  My doctor there will be Dr Koehne - it feels kind of weird to start receiving treatment from doctors other than the ones here...  So I called OMC and explained my situation to Rozenia, my intended manager, who was really great; calling Friday afternoon to say you're not starting your job on Monday is not fun for anyone. I got sooo close to being a phlebotomist! Well maybe in a year I'll be back knocking on doors looking for a job.

The risks are different from before, 20% die in the first 12 months, but 80% live 2 years or more and of them 20-25% are cured - which is of course what we are aiming for. MM is not something that could be 'cured' up until now as other peoples cells are not normally used. Certainly my first transplant was autologus (from myself), which is the conventional treatment for MM.

Okay so maybe not as short a catch up as I thought, but all that said... I feel fit and up for the next battle.

I'm a realist though, and I know how hard a fight this is going to be. 
Not a lot else to say right now but I'll be updating and posting photos as we go forward.

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.

Tuesday May 31st 2011.

Things have been quiet around here, partly because of a bug on blogspot didn't allow me to login. So anyway, my next appointment isn't for another 8 days or so. It's my 180 days (6 months since transplant) check. Which means lots of tests, well lots of x-rays and blood and urine tests plus a bone marrow biopsy. At my last check on May 23rd all was fine. I started the ball rolling for my second opinion trip to Boston, hopefully we can organize it for the beginning of September. All my counts were fine, platelets were 160 which is getting to the lower edge of normal but as this was the only number on the low side my N/P thought it was probably because of one of my drugs if been on since transplant, they have a tendency to suppress platelets. Happily after 6 months post transplant I can stop them. Soon I'll be on hardly any drugs until maybe they decide to put me on a low dose chemo drug, my old friend Revlimid. My hemoglobin was 9.8 which is still great. I can't remember the others so they must have been fine. I also had my last Pentamidine treatment. Still working out on the bike and the numbers are still getting better. Up to an Av of 16.44/hr on the trainer. Still slow but getting better. Resting HR down from 100 to 68...so far.

Fun in the Pentamidine tent!

Wednesday May 18th - BMT Clinic

They say working out cannot help your hemoglobin level, well maybe they'll find a link at some stage because mine is going through the roof! Well not the roof...it is still not even normal but at 10.1 it is at least in the same neighbourhood as normal (13.5 - 16.5). I think it had been dancing around 7 point something for over 6 months, then when I get back to an hour on the bike a day it only takes 3 weeks to get to 10.1! Whatever the reason I'm happy. Other numbers WBC 4.7, Platelets 198, ANC 2.87 all are a little bit down but still in the normal range so nothing to worry about. Blood Urea Nitrogen (BUN) is showing I'm a little dehydrated still - which is amazing as I'm consciously trying to drink more. That being taken in to account my Creatinine at 1.82 is pretty good I think. I'm hoping if I manage to drink enough it will show below 1.7!
So that is all the boring, hard to understand medical stuff. I weirdly enough understand most of it now and pay close attention to my labs.  And what the numbers are telling me my body has already let me know, I feel great and I'm getting stronger. On Sunday I dusted down my outdoor wheels, put them on my road bike, put on all my cold weather gear (it was cold and windy out) and rode out to Shawnee Mission Park. It is a hilly ride and not that much fun given my current level of fitness but I wanted to get out and back without getting off my bike on the hills. I also wanted to gather information on my Garmin to compare back and forward to plot my progression. Well I made it there and back without putting my feet on the ground. My average speed was...unprintable but I was pleasantly surprised I didn't feel worse. I'll be training on longer flatter rides for a while I  think. On the trainer in the basement I do an hour with 1 minute standing intervals every 10 minutes and that is feeling better. My distance is increasing (in an hour ride) from 13.4 to 15.27 miles, still a long way to go though.
I am starting to look at setting some goals on the bike which is great. For a while there the goal was to get on it again and now I can imagine it will be a bit more, although I've not figured out what my new goals are yet.
It feels like I can start to resume my life now, well a more normal 'my life'.