Cooper Harrison Loland Arrived

On August 18th, 9 PM and some change, Cooper arrived, healthy and kicking. The delivery was relatively easy, but of course that is easy for me to say. But definitely easier than both Christian and Alex. He is a little smaller than our previous other two, but length wise the same. He scored 90% in length and 50% in weight. But importantly, from a CML perspective, he is for all we can tell, a perfectly healthy Sprycel baby.

This is significant, in that there are not that many Sprycel babies, since the drug was only approved for usage in 2007 I believe, and the label still states that men (and women) should not have kids while on the drug. But working with my fantastic team at OHSU, this was ok'ed and planned. We never knew if we wanted another child, in fact, some days 2 very active boys seems too much, but once I reached a very stable low level CML (last 4 tests since Oct 10 have been weak positives), we made the decision that life isn't going to be put on hold.

On a different note, I just had my 2 year on Ariad, or Cycle 24 as they call it. Ariad goes by a 28 day month, so it's not a full 2 calender years. It's amazing how time has gone bye, I ran into Nancy, she is one of the nurses in charge at OHSU, and I got to talk to her at some length. She was the first nurse I had down there, the first day. The first day still rings loud and clear in my mind, the fear of taking a compound that hasn't been tested that much on humans, the anxiety of not knowing what it will do to you, an the fear of what it will do to you. Will it work, won't it work, and is all this for not...All history now, but reminds me that this is a life long journey. It was so nice to share what has been happening with Nancy, since she spent the entire first day with me, drawing blood every hour, and listening to my story. Walking through the halls down there, I realize that nurses are either amazing at remembering names, or they actually do take interest in patients. I had 3 nurses call me by my first name, just walking around. When I think back, I have spent a lot of time at OHSU over the past 2 years.

So while no results are back of course yet, other than my CBC's that are on the lower side of normal, I did learn that I am now going to start going to OHSU every 6 months instead of every 3. They still will require a biopsy since my abnormal chromosomes that have shown up in the past year, but if not for that I wouldn't even need a BMB. Maybe one day I will be completely boring, oh, that sounds nice...

10 days off Sprcel

October 26

Oct 28th - 10 days off Sprycel and other updates

Being off Sprycel was kind of the reverse of going on the drug in the first place. Some mild headaches, that easily went away with Tylenol. Once through that, I am feeling better, and my weekly checkup numbers have shown that my White Count has increased slightly from 2.2k to 2.8k, and my platelets have gone up from 44k to 58k. My hemoglobin has also gone from 9.7 to 11.3, which is correlating to more energy.

 

On a different note, our friends gave us an absolute wonderful weekend. Between babysitting, bringing food, watching the kids so that Cynthia could finish up a project in the house, and a great round of golf, it was a very good weekend. Christian especially loved the sitters, he asked me today 'where are the guys' ?

 

So Plan A is still the drug study at OHSU. Hopefully we sorted out some insurance questions today, I've been told that I may start as early as this week. I'm eagerly awaiting a start date, we're ready to get going on this study. My numbers are slowly going up, so we're not greatly concerned, but I feel somewhat unprotected not taking any drugs. But with the T315 mutation, I know now that none of the existing meds would do anything for me long term.

 

On another note, during my blood draw today, Dr. P stuck his head in (I was only supposed to see the nurse), and he said "you better be nice to Tanya" ...it really caught me off guard, since I wasn't expecting to hear anything yet. While there is another test they do, he is pretty confident that she is a 10/10 match for me. We haven't heard back from Kristine yet, but having just one of them being a great match, is grealy comforting. I knew I had a good chance to find a good match on the registry, but of course a sibling match is ideal. Transplant is still Plan B, but it's nice to know that I have Tanya as a good match for me.

 

3 month biopsy on Sprycel

Just a quick note, today was my 3rd BMA (Bone Marrow Aspiration) since Diagnosis. At least I know what to expect each time now, and the dr's have it down to a relatively simple procedure. I had been toying with the idea of not taking one of the 2 pain medications, but sure glad I did. He had to do it twice today, and it was a little more painful than I remember on the 2nd try. But I think they got some good samples, now I wait for a week until I see him next week to talk about the results. Normally he would simply call me, but this time we're going to meet.

 

The reason to meet, is that he wants me to have a CBC (Complete Blood Count) run again, this one is pretty straight forward, and happens everytime I walk into the building. Draw blood, and the results are ready by the time I see him upstairs. The reason he wanted to run CBC again, is that my White count has dropped even further, to a new record low of 2800 and my platelets that seemed to have done a drop from 200 to 80, then back to 90, are now at 48k. Pretty much all my numbers dropped, also making me a little anemic and fatigued. I must be more plugged into my body lately, since I had been feeling more tired than usual.

 

So, again, in this game anytime you're numbers are dropping, it's usually a good thing. He thinks our discussion in a week *may* include dosage if I fall too low, possible a short break, or just a reduction from my current 100 mg a day. Both scenarios are totally normal, and it seems like a majority of CML patients have experienced these situations.

 

I'm just coming off the drugs, so my hip throbbing in pain, but that too shall subside....

2 months checkup on Sprycel

Had a checkup last week, with Dr. P. My WBC have stabalized at 3k, and the platelets were back down to 80k. Since they had bounced a little back and forth, he's comfortable that it's stablized with this new baseline. On Gleevec, my platelets held around 200k, but on Sprycel they seem to be in the 80-90 range. The other WBC numbers are also staying steady at around 50% less than Gleevec. The data guy in me wants to do a time series analysis, but I'll leave it with 'something is going on'.

 

My next appointment is 6 weeks out, in end of September to do the always fun Bone Marrow Aspiration. This will be my first since Sprycel, although I keep hearing dr. Dukers voice say not to expect too much in the first 3-6 months.

Something must be going on

After my last appointment where my platelets had dropped from 200 to 81 in 2 weeks, my dr. scheduled an 'in-between' 2 week check, to see if I had bottomed out and starting to increase, or continue downwards. He's actually on vacation, so I saw his RN. I'm starting to appreciate what I have learned, so that I can at least read my numbers and know what to look for.

 

The good news is that my platelets went back up to 98 (from 81) so that is definately good. I asked about sports, and all she said was to avoid a direct hit. Since we're playing a soccer tournament up in Bellingham this weekend, I didn't want to be too specific, this don't ask, don't tell approach works for me.

 

What was interesting, is that most all my white counts have had a reduction in the past 4 weeks. As you may know, a Stem Cell will turn into multiple types of cells (White/Red/Platelets), and the White cells turn into multiple types again. So in my mind, a reduction across the board (of white cells), is actually an indication that the source of the cell is being affected. At least that is what I'm telling myself. The real indicator won't show up until we do another BMA, which would be in September at the earliest. Even then, Dr. Druker and my own dr. said not to read too much into a lack of progress, these things take time. This is truely hard for someone that is impatient with regards to some things, especially CML....

 

So here are my numbers and the corresponding reduction over the past 4 weeks.

 

	June	July	Reduction
Platelets	205	81	60.49%
WBC	5.23	3.23	38.24%
RBC	4.82	4.55	5.60%
Neutrophils	2.83	1.23	56.54%
Lymphocytes	2.11	1.75	17.06%
Monocytes	0.37	0.19	48.65%
Eosinophils	0.05	0.03	40.00%
Basophils	0.1	0.03	70.00%

Dr. Drucker visit and 1 month checkup on Sprycel

Sorry for not updating the blog lately, it's been busy to say the least. So much has happened in the past month, so I've decided to break this entry into two sections. The two big events are my 1 month checkup on Sprycel, and my visit to OHSU (Oregon Health & Science University). We got to spend 1 1/2 hour with Dr. Druker down at OHSU, and it was both a sobering experience, but also an incredible opportunity to be educated on what CML is, and specifically what is happening in my situation. it's clear that every situation is unique, although there are always similarities in the different cases.

July 2nd Visit - OHSU, Dr. Druker

We drove down to Portland the night before. You'd think that we'd immediately look for sleep without the kids around, but we took the opportunity to go to the hotel restaurant for a late night bite. It probably had a great view of the river, but it was too dark. The next morning we had to scramble to OSHU. It was only a couple of miles away, but it sits up on a hill and is a little confusing to find. The campus is clearly older, especially compared to SCCA. Looked like something you would expect an old University to look like.

My blood pressure was way up, something we clearly could contribute to the fact that we were running late due to traffic, and being late is probably one of my worst stress factors. It was 150/90 (later you'll see where I normally range). We spent some time with his nurse before the visit, and she was incredibly knowledgeable and clearly had a lot of experience in treating CML. She immediately called out that there was nothing in my medical records that indicated that anything was missed, which isn't always the case. I have a lot of confidence in SCCA and Dr. P, so it wasn't a surprise that I've already been in great hands.

Dr. Druker came in while Cynthia had to leave the room briefly, and for some reason she walked in on us already talking about a Bone Marrow Transplant. So we made sure to back up and start from the beginning. We covered my background, did the Sokal Score (it was 1.7 which is on the higher end). Based on his assessment, I was probably in the more late Chronic phase when diagnoses, and the Leukemia could have been there for 3-5 years. It's such a slow developing illness that it's hard to tell when it happened. Ironically, there is a chance that Tyler and I developed it around the same time.

He also shared that in many cases, people don't know they have Leukemia until the either come in for some unrelated surgery, or for women when they do blood work while pregnant. I can't imagine to find out that you're both pregnant and have leukemia at the same time. What I did learn, and I want to stress here, please ask for yearly blood work (blood count numbers), they can tell so much from that and it's always better to treat an illness in the early phases. Simply donating blood won't catch it, and it's not typically part of an annual physical. So you have to ask for it.

Our conversation with Dr. Druker centered around two things. How I got to where I am, and why switching to Sprycel now is the right thing to do. It's all about risk factors, and the goal is to get my risk of relapse to a minimal. Also the goal is to get my PCR down to 1 or below, his exact words were "I have been impressed with patients reaching 1 on Sprycel". He said on Gleevec the goal is to get to 0.1 or below (on average). The sobering part of our discussion was centered around what if Sprycel doesn't work, and when to have the dreaded BMT (Bone Marrow Transplant) option. As of right now, it's not on the radar until 6 month on Sprycel, so we're keeping our fingers crossed that we see some progress by end of the year.

1 month checkup on Sprycel -

I had my 1 month checkup at SCCA, and my first chance to talk to Dr. P about my visit to OHSU. He had received the report from them as well and had looked it over. Again, no surprises, so we focused on my current blood numbers. The Chest X-ray was clear, so I'm not showing any fluid buildup. This could happen at anytime on Sprycel and is a common side effect of the meds. What was most interesting is that my Platelets had dropped over half, down to 80k. I have been over 200 for a while, so it was a big surprise. I'm still processing this, but my current thoughts is that it's a good thing since it means that Sprycel is doing something. Now what it's doing, we won't know for a few months since the marrow has 1 trillion cells, and it takes a while to show an impact in the PCR test. It did cause us to schedule another blood draw in 2 weeks, to monitor the Platelet counts. Since it's been 2 weeks since my last draw, it's hard to say if it's already bottomed out and starting to increase, or continuing downwards.

They did the PCR on the blood, and those results should take about a week. We know now to not expect much for the first couple of months on Sprycel, first real indicator should come sometime by 3 to 6 months. So no movement isn't necessarily bad for the first few PCR's.

Otherwise, I'm feeling good although a little tired on Sprycel. It should get better. The headaches I experienced early on, are gone so the body seems to adjust to the medicine nicely.

oh, and my blood pressure was 112/60, perfect as Joanne the nurse likes to say :)

2 week checkup on Sprycel and Mutation report

The first week on sprycel was tough. I was having a predictable headache, every morning. I have also been feeling fatigued, but there are enough other reasons to explain that, other than Sprycel. The second week it got a little better, but then I have been battling a cold over the weekend. Christian got the cold end of last week, and as clockwork, I got it a couple of days later.

 

Today I went into SCCA to have my 2 week check after starting on Sprycel. Those who haven't read the blog lately, I wasn't responding well enough on Gleevec so 2 weeks ago Dr. P decided to switch me over to Sprycel. Well, all my blood numbers are doing great. White Blood Cell count was up a few hundred, but there is natural variance so nothing to be alarmed over. I was actually expecting the WBC number to drop slightly due to the shift of meds, but that doesn't seem to have been the case. Basically, Dr. P was very satisfied with my first 2 weeks.

 

And for some even better news, the mutation report that was done after my last bone marrow aspiration back in early June, came back 'no mutations detected'. That is a big one since I was speculating that I failed Gleevec due to a mutation, but it doesn't appear to be the case. Now I wonder if a higher dosage of Gleevec may have done the trick.

 

All these questions I look forward to asking of Dr. Druker in early July. After some good advice (thanks Yanni & Annie), I made the appointment with Dr. Druker to see him in early July down in Oregon. He is recognized as one of the for most experts on CML, and Gleevec. He is credited for discovering Gleevec and the concept of how these drugs work.