On the right path (6 weeks on Ariad drug)

Last week, Dr. D had a PCR done. This was not a normally scheduled test, but I think he was curious to see if there was any activity by the drug. My expectations were low, since I knew during my previous drugs, that you had to really wait a full 3 months to see any measurable results. When I started Sprycel, the idea was to do a monthly PCR, but then Dr. Druker at OHSU said that was too soon, and don't expect anything. So our expectations on the 6 week PCR test (blood only) was very low.  The test also takes 1-2 weeks to come back, so we had little hope to get any news before Christmas.

 

So to my surprise, I got a notification from OHSU's health site that a new test result was available, on 10:30 PM on Monday. I know that Dr. D is pretty dedicated, but they go above and beyond. I was pretty nervous opening up the test results, not knowing what to expect. Here is the graph of how I am responding, compared to the first 9 months on the other drugs:

 

 

 

As you can tell, the drug is having an effect. In the first 6 weeks, the drug has done more than twice as much as the 9 previous months on Sprycel and Gleevec. The goal is typically to reach Log 3 reduction by 18 months, so we're definately tracking to some positive results.

 

For those who are like me and didn't quite pay enough attention in school, the log reduction is based on a 10 fold decrease for each log. So if you started at 100, then 1 log reduction is 10. Another log reduction would put you at 1 and a 3 log reduction is 0.1. The reason 3 log reduction is a major milestone, is that statistically they have shown that those who achieve a 3 log reduction by 18 months, have an outstanding chance keeping it under control long term. You will see me more and more track my progress in terms of a log reduction. But in raw numbers, I was 50 early November (you can almost think of that as 50% leukemia cells out of 1,000,000 tested), and now I am 4.4 in 6 weeks. Of course the 3 month will show more detail, but there is clearly something positive happening.

One year ago - December 3rd, 2008

Exactly one year ago, I learned that I was diagnosed with Leukemia. We didn't know at the time that it was CML, just that my white count was about 20 times what it was supposed to be. I spent some time today re-reading those e-mails from the first few days, and reliving those days. I'm not sure a professional would say that it's healthy or not to relive the darkest days of your life, but I felt it was important to understand where I was when I started this journey. I've always felt it was important to understand where you have been, before charting a course forward.

 

What sticks with me, was the incredible support and comfort I received from family, friends, co-workers those first few days and continue to this day. Our familes have stepped up to help in any way they can, and as I write this Cynthia's mother and aunt are staying with her, to help with the kids and anything else she needs, while I'm down in Portland. But the greatest impact to my current situation, is Cynthia giving me the space to get myself in a better place, and there when I needed someone to take over when I wasn't up for it. I think we have definately challanged the wedding vow that talked about in sickness and health.

 

So I ask myself, why even relive those painful moments in my past, and simply let history be ? In my case, it puts in perspective where I am now, and how much has happened since. The sky hasn't fallen, I'm not feeling ill, and Syracuse basketball is playing better than they have since 2003 when they won the National Championship. The point I am trying to make, is that life has continued, even improved in many ways. The arrival of our 2nd boy Alex has allowed us to rekindle the memories of lack of sleep and being thrown up on constantly. Christian at age 3 is allowing us to rediscover wonders all around us. Many times I wish I could see life as he sees it, I imagine that things are simple, and there is no fear in life (other than the monster in his room at times). But even then we overcome the monster by hiding under his Thomas blanket…We hide together, and we tell the monster to ‘go away’.

 

I’m feeling very educated about CML, since I have spent countless hours diving into as much information as I could gather. It’s difficult sometimes, since it’s not like I can buy a CML for dummies book at Amazon, or take at course to learn about this.  But knowledge has allowed me to take an active role in my treatment, and also be able to communicate with my doctor when needed.  I decided that I’m not settling on simply following the prescribed treatment, and being in the trial was due to reaching out and learning about other options. If it wasn’t for the trial drug, I would literally be in the midst of a transplant these days since that would be my only option. I have networked with other CML patients, and both found comfort in their stories, and in some case grief when the outcome was not positive. While Tyler is doing good, there are other friends who are worse off, so I don’t feel I can rest until we’re all out of the woods.

 

So I ask myself, where am I today ? Well, physically I am sitting down in Portland, part of the Ariad drug trial. I’m feeling great, and I’m anxiously waiting to see if the drug is working as hoped for. Compared to 3 or 6 months ago, I’m actually in a better place in that we now know that the first 2 generations of drugs, wouldn’t work since I acquired the T315 mutation. But that is all water under the bridge now. My backup plan (which was like Plan E when we started), is a bone marrow transplant, with my younger sister as a perfect match (10/10). I have to sometimes remind myself that I am only 3-4 weeks away from a transplant at any given time, so that I don’t get ahead of myself. One day I imagine I will feel differently, but for now, that is my monster in the room…

Dec 2nd - Cycle 2, Day 1 Ariad Trial

The trial works on a cycle (monthly) and a day offset of each day. So it's basically 4 week per cycle. Today is Day 1 of the 2nd cycle. It's an all day appointment, with various tests. I also got to see Dr. Deininger today, and Linda, his nurse. Both were so instrumental in getting me into the trial.

My platelets that I was most worried about are down to 52k today, from 56k on Wednesday last week, so they have definitely started to bottom out it appears. Dr. D had already contacted the drug company, to see if there wasn't room to keep me on the same dosage, even if my platelets fell below the 50k required in the protocol. Since I had been regular on 44k during my Sprycel months, he felt there was little risk to allow me to go as low as 30k. They agreed, and made it a discretionary decision by him. Since I have full faith in him, I have no problem following his guidance. The alternative would have been to lower my dosage until the platelets came back up, or put me on a brief drug vacation which is quite common on these types of drugs.

I also got to schedule my Seattle visits, which will start every other week beginning next week. So after I leave Portland on Thursday, it will be almost a whole 2 weeks before I come back down here. While Portland has been very good to me, I won't miss the drives and being away from home and the family. 

Otherwise, still feeling good on the drug, the plan is just to keep me on the current treatment plan, and wait and see. He is very pleased with my counts and condition, that's good enough for me.

20 days into the Ariad trial

Can't believe it's already been 20 days on the new trial drug. I am doing some day round trips to Portland, and I have to say that I am getting way to familiar with the route. Come December, I will only have once a week appointments, and half of those can be done at Seattle, so I know there is light in the end of the tunnel.

My BP has been very stable around 130/80 for the last 4 times, so I think the stress is off there. Today's CBC showed whites at 3.2k, platelets at 66k, and Neutraphil at 54%. In english, the only number to be a little concerned about is the platelets, since if it drops below 50k, then I may have to have a short vacation off the drug, or lower dosage. This is not abnormal for these types of drugs, in fact, on Sprycel I hit 44k on Sprycel. As for the whites, it went up to 3.9 last week, but now back to 3.2. These numbers will swing +/- 100's, even within the same day, so it's nothing to worry about. as long as I don't see higher than say 10k, I should be comfortable with the white number.

This week has another round trip to Portland on Wednesday.

14 days into Ariad trial

On the side effect front, none to minimal. Had some muscle ache last weekend, but it was just a few hours over a couple of days. Someone else had reported similar side effects.

 

Friday's appointment included an Echo-Cardiogram. If you've never seen one of these, it's basically like a sonogram of a baby, but instead they are looking at your heart, each individual chamber as well as the valves. It's pretty fascinating to lay there watching your heart beat, and see the flow of blood going through each chamber. Things looked normal per the technition, but of course a specialist has to view the results.

 

On the CBC (Complete Blood Count), my whites have been 3.9k all week (fairly stable), but my Platelets dropped to 77k on Friday. We covered on Tuesday what would happen if they drop below the 50k mark, which is a lower limit of being on the trial. Dr. D would either lower my dosage for a short period, or give me a drug vacation. I think between the two, I would probably prefer a lower dosage, since I know people getting as low as 15mg are getting a response, and I am on 60 mg.

 

This coming week is a Monday/Wednesday appoitment, in which I will do the down and back each day. The road to Portland is definately turning into the road most travelled these days, but the prospect of being able to come home to Cynthia and the kids each day, is worth the drive alone. Come 2nd week of December, it's a weekly appointment, with every other week being possible to be done in Seattle.

7 days into Ariad trial

While I was hoping this past week would be less stressful than the previous week, unfortunately it was not so. I got a call from our friend Leif on Friday, that one of the greats, Scott Lui had passed away. Some may know that Scott had battled CF his whole life, and at the age of 32 had a double lung transplant that gave him another 5 years. He was truly one of a kind, and we all will miss him greatly., The trial let me head home to be with the soccer team Friday night, and we cancelled our game and instead met at the Roanoke Tavern to share friendship and some good Scott stories. The one thing that will always resonate with me, is that how graceful and bravely Scott approach his disease, and he learned quickly in life that time and friends are precious and that you attack each day with a zest for life. He leaves a giant hole in our hearts, and our thoughts and prayers go out to Kristen and his twin girls Ruby and Stella that are left behind. Scott really was a gift to everyone who had the luck of crossing paths with him.

 

On the trial side of things, it's becoming a little more routine. I think we figured out the BP problem, it turns out that my BP is 12-20 points lower when taken manually than compared to the Blue Octopus. The nurse did a very thorough experiment this morning, measuring multiple times, and we came to the conclusion that I'm a manual kind of guy going forward. It seems that side effects of some early headaches are going away, so if this is the worst of it on the drug, I'm doing good. (Knock...knock)....Today Nancy is my nurse again for my all day testing, she is wonderful and besides the fact that I have an IV in my arm to simplify blood draws, it's really not that bad.

 

I’m off to lunch, due to not being able to eat +/- 2 hours of the trial drug, my breakfast got screwed up so I am starving...

Day 2 in Ariad trial

This morning was just a quick 30 min appointment, check vitals (still high BP), draw blood, and then take my medicine. I don't really get results or anything, and the way the meds work,, we won't really be looking at my blood counts until probably next week when I see the Dr. again. These daily visits are just with the clinical study coordinator and a nurse. The staff is just wonderful, and even after just a couple of days, I feel that I'm seing friends each day.

 

No side effects yet, so hopefully that stays. The possible side effects are headaches, skin rash, and some blurring of th eyes. Of course everyone reacts differently. The dr's thought is that more people on Sprycel experience the low blood count numbers, compared to this drug, so we shall see...Everything is going to plan, so just taking one day at a time...The only real bummer is that they want me to stay down here this weekend, but possibly home next weekend.

 

Thanks for all the well wishes and e-mails. It's been really nice to pull my computer and hear from everyone. It really made yesterday's experience so much better.

Much to catch up on

So much has happened in the past week that I have to start at middle of next week, and go forward. I had left last entry that we were waiting on Insurance coverage to come through, and it got interesting from there.

Middle of last week, we got a preliminary denial from the insurance company, which at the time didn't seem to unreasonable given that we know that they do not cover Phase 1 trial drugs. We were told by OHSU that it is unfortunately common, and usually approved upon peer review. So my dr. at OHSU was going to talk to the medical director of my insurance company, Friday morning. As luck had it, it was the same time that I was scheduled for a transplant consultation at SCCA. This is being done to make sure that we proceed as far as possible with planning for the transplant, without actually doing one. The whole idea of the drug trial, is to hopefully finally get the results we are looking for from a single pill a day.

Cynthia had her blackberry with her into the meeting, and we knew an e-mail would be forthcoming. Towards the end of the meeting, we received word that we had been denied, even after the peer review. I think OHSU was simply floored, they had not experienced this before, and my participation was at risk to say the least. Literally when we walked out of the SCCA meeting, I was resigned that I was 3-4 weeks away from a transplant.

Now Cynthia has a more assertive approach to these things than me, and after some deliberation, we decided to reach out to OHSU and see if we could still enroll in the study, and pay our portion that the trial wouldn’t cover. We didn’t know the exact costs, but we knew that if we didn’t enroll on Friday, we would miss the window and have to possibly wait 1 more month, which did not seem like a good idea given that I am on no drugs at all….

OHSU did a quick check, and said that would be fine. Although I would need to get down to OHSU that afternoon, since there is a consent form that had to be signed in person with the Dr. he was going to be out of town the following week, so we looked at each other, and simply pointed the car south. We made Portland in a little more than 3 hours, which on a Friday afternoon is a small miracle.

When we got back, we knew that we had bought us some time. We were told there were other appeals avenues, but the problem we had was that I had to be enrolled on Friday, or wait. I reached out to a former manager at MS, who put me in touch with a Director in HR. I know realize how huge that was, since while we were sitting at OHSU on Monday, the nurse popped her head in and said that it was now approved and they were getting it in writing from the insurance company. I literally felt my shoulders drop 2 inches, due to the stress we were under.

So Monday turned out to be an all day screening day. Besides a blood pressure issue, I did very well, and the team understands that it’s stress/anxiety induced, but we are closely monitoring it.

 So today (Wednesday) I am literally sitting in the recliner at OHSU, with an IV hooked up to my arm so that they can take blood without poking me with another needle. I took my first dosage of 60 mg at 9:10, and I am getting blood draws very frequently. The last one today will be at 5:10.

I think in the last week, I lived through every possible roller coaster experience I could imagine. Through this all, I can’t express how much Cynthia has done, and made me able to do. I find that I lean on her more and more, since when it becomes overwhelming, she has the ability to see things clearer. We also have had incredible help from her mother and Aunt to help with the kids while I’m out of town.

Right now, it looks that I will be calling my address Portland for at least 10 days. I can’t go home this weekend which is a bummer, but I did bring my golf clubs, and my newly acquired Big Bertha driver from Brian. I plan to vent any frustrations over the past week, on some innocent range balls…

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.

 

Smoking gun

One of the hardest things for me has been not able to explain what the heck is going on. I 'failed' Gleevec with no mutations found, and then I am having little effect with Sprycel. It's been extremely frustrating to not be able to explain what was going on. I have asked myself countless times, would I be better off going the transplant route, rather than the Ariad study, since we had no documented evidence that Ariad would be able to help me. I suppose because of that situation, starting the process of preparing for a transplant has been easy to accept, since I have no idea of what Ariad could do for me.

 

On Monday, I got a call from Dr. P, and he left me a message that he would try to reach me that afternoon. I’ve come to learn when a Dr. calls you and leaves a message with no content, it’s never good news. I learned that from my day of diagnosis, when my dr. asked me to come back the following day. I’ve also correlated the seriousness of the news with being able to discuss over the phone, or have to go in person.

 

He called back a little while later, and the news he had was related to my mutation report. For those who may remember, a mutation report was done back in June after failing Gleevec, and no mutations were found. This time, it came back and it showed that I have the infamous T315I mutation, which is known to resist both Gleevec and Sprycel (and Tasignia as well).  This is probably the most known mutation of CML, since it’s documented for quite some time, and no drug to date has managed to show good results against it.

 

Now we know why my CBC’s were very good, but my Cytogenetics were not improving. As Sprycel/Gleevec were killing off the non-mutated leukemia cells, they were being replaced by the T315I cells which the drug was not able to latch on to. This resulted in over time the percentage of T315I cells becoming more than 20% of the overall number of stem cells (which is when they typically show up in a mutation study). This replacement of bad with worse cells has been happening over time.

 

This helps address a nagging question, would increase dosage of Gleevec worked for me, would increased dosage of Sprycel do the trick, or switching to Tasignia ? The answer for all is no. It’s clinically shown that none of those will address the T315I mutation. In fact, without Ariad, there would only be one option on the table, a Bone Marrow Transplant.

 

So, in a way, this is good news. I am hesitant to share too much about other people’s result on Ariad and T315I, but it’s safe to say that I am now a better fit for Ariad than I was before, since that drug is designed to tackle the T315I mutation as its primary objective, among others. In fact, the press release in July calls out the effectiveness on that mutation.

 

So I remain cautiously optimistic, I have been told that they should be enrolling me no later than the end of this month. SCCA and OHSU is coordinating my treatment, and I just learned today that they want me to discontinue Sprycel to allow my numbers to rebound before starting the new drug. It does mean a month in Portland, so I’m reading myself on all levels to be down there and focus on what I need to do. Now it’s game on, we know within 3-4 months, there will either be good news on Ariad, or transplant will be the plan of record.

 

Thanks again to Mandy/Tyler, Amy and Beth and Bobby who have been a wealth of information and someone to lean on. My aunts have also as usual been able to provide encouragement and support that only they seem able to do.

2nd update of the day

Just a quick note talked to Dr. P today, and he and those he consulted didn't think that putting me on higher dosage of Sprycel or moving me over to Tasignia would get the desired effects. They just think it would be lowering my blood count numbers, and may not be a long term sustainable response.

 

They are running another mutation test, which may show us if it's mutated, or something else going on. We are in a wait and see until we get that back. I did schedule some time to go down to OSHU to meet with someone regarding the Ariad trial, and see if my profile is a good fit for the trial drug. It wasn't that long ago that Gleevec, Sprycel, Tasignia were all trial drugs, and they have done mirables for 1000's of people. So a 3rd generation may be worth exploring. They are in a phase 1 study, determining the right dosage. Tyler is going with me, we're heading down to Portland on Tuesday.

 

Speaking of Tyler, I feel blessed to have a friend like him. I truely feel blessed with all of our friends and our families, but having Tyler in our life has allowed me to turn to him when I need a friend to lean on, to talk CML about, and just about anything else in life. Thank you Tyler !

 

Meanwhile we're getting the process started on getting my sisters HLA typed, since I have to face it, a transplant is a good possibility as my treatment of choice. I still think that we're in a little shell shock that our list of options is shrinking.....

3 month results on Sprycel

We met with Dr. P yesterday, the results were in from the BMA last week. Unfortunately, it's still not the numbers we're looking for, my Cytogenetic moved a whopping 1, from 20/20 to 19/20...The other (FISH/PCR) stayed roughly the same. We're mostly focused on the Cytogenetics since that is the one we first have to get down (goal is 0/20).

Now the words of Dr.D are still ringing in our minds, "don't expect too much from the first 3 months on Sprycel", so we're not quite flipping out yet. We had hoped to see something, since my counts had all been pushed lower on Sprycel. Dr. P is already consulting with Dr. D on what options we may have, since we can up my dosage, look at Tasignia, or possibly a trial drug. I'm even considering the option of going to 800 mg Gleevec (not sure they will give me that option). What is compelling about Gleevec to me is that there is a test to measure what your concentration of Gleevec is in your blood, where as there is no test like that for Sprycel. I keep wondering how much of the drug is getting to where it needs to go, and would a dosage increase help. Given that my blood counts are soo steady, the drug is doing something good, it's just not getting us the last 10% of the way there....

We did start the process of getting me HLA typed and also going to be getting my sisters typed. This is still plan B or C, but it's prudent to at least know. I do have 115 now on the Leukemia site that are a 6/6 match for me (up from 107 in March), so there is a very good chance that we can find a good unrelated donor if needed.

I purposely try not to put too much emotion into blogging, but I can't hide that I'm definately disappointed. I think getting HLA typed yesterday and have to even have the conversation with Dr. P makes you face the reality that I may have to follow Tyler's route one day.

The good news is that I'm still just chronic, in that my marrow is being kept in control by the meds, I'm not failing with increasing white counts. It is just this is going to hang over my head, until we get the numbers down.  I'm now just waiting to hear back from Dr. P after he has consulted with Dr. D on what to do next. It appears I just have a very stubborn form of CML that the meds have a tough time penetrating. Since my CBC numbers are soo steady, it's surprising us since the meds are clearly having an impact, just not the fully desired effect.

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.

Never been a better time to join !

Would you want to know ?

I watched a recent episode of Scrubs, where, a man found out his mother had a terminal decease. He was told that he had a 50% of developing the same condition since it was genetic. The big question facing the man was if he wanted to be tested or not. When he decided not to, the dr. questioned why not ? His explanation stuck with me..He said that once he knew, he could never go back. It's not something that you can let out of the bag, and then expect to be able to put it nicely back where it came from.

 

I guess I see the same pattern with Leukemia, and any serious condition for that matter. Even if you follow the best possible path, of receiving log 3, and possibly even to undetectable, then can you be 100% it will never rear it's ugly head again ? I was thinking about this when I had lunch recently with Tyler, Mandy, and Cynthia a week ago. Now I don't know enough about the official status after a Bone Marrow Status, but I believe that technically Tyler may be cured. But they still have him on Tasignia, which is a 3rd generation cancer drug. So even thought he technically should be 'cured', they still keep him on cancer fighting drugs. I guess there is more to it than I understand. But the CML is out of the bag, and it's something I think we'll just have to face that will be part of our lives, for a long, long time.

 

Speaking of Tyler, it had to be the highlight since our son was born, to get to see Mandy and Tyler. It was so nice to spend some quality time, and in many ways it felt like pre-cancer days. If I had to summarize it, Tyler looked great. What was most comforting was to see that his wonderful sense of humor and spirit was coming through again. He's been through hell and back to quote an old Meatloaf song, but he's on the road of recovery and I just continue to pray that this will just be something in his rearview mirror and he moves forward. And as an added bonus, he came to watch our soccer game that night. He had a big old sub with him, so I'm thinking his appetite is back !

My 4 1/2 month checkup on Gleevec

Just a quick update, I had my 4 1/2 month checkup. This is just a routine checkup, to make sure the blood work shows that things are going ok. Good news is that I'm still in Hematological remission, with a WBC of 5k. This was slightly up from last months of 4.2k, but totally normal. We don't need to worry until it approaching 10K and above, so we're looking to see it stabilize somewhere between 3-7k (most Gleevec patients run on the lower side of the normal range of 4-11k.

 

The next appointment will be June 1st, which will be the always fun BMA. Those results won't be available until 7-10 days after that.

The black Koi

A few years ago at our old house, Cynthia brought up the idea that gee, wouldn't it be nice to have a water feature in the back yard. In hindsight, I think she was talking about some type of fountain, with running water. Well, one thing led to another, and we decide to build bigger, and even add fish. Neither of us had much experience with keeping goldfish or Koi, but what the heck, can't be that hard, can it ?

 

Well, to make a long story short, we have since enlarged the original pond, then we built a new pond at the new house since we had to move the fish with us. We went from an original 300 gallon pond, to the current size of 4800 gallon, 3 pumps, 3 filters, 2 UV lights, 2 streams/waterfalls, and a bridge across it. We placed all 24,000 pounds of rock by hand (used a special mortar this time that is fish safe since we didn't want the risk of kids falling). But, I regress...

 

In this pond, we added a black Koi last summer. Having a black Koi is supposed to be good luck, and you can't have enough luck these days. Needless to say, we quickly realized that he didn't exactly stick out swimming next to his cousins, with their bright orange, red, and yellow patterns. In fact, after we got him, we stopped seeing him. And that is unusual, since although the pond is 3 1/2 feet at its deepest, we maintain clear water so you can see to the bottom.

 

Unfortunately, we've also been battling a Blue Heron for more than a year. We did lose a few fish to the bird, and if it wasn't for the fact that the bird is protected, he'd be stuffed in our living room right now. I know our neighbors won't turn us in if the bird has an 'accident' in our back yard, but it's just too darn hard to hit him with the car or the mower....I've even considered installing electrical wire across the pond hoping he will strangle himself since I've read that the number one killer of Heron is electrical wires...I believe I can make it look like a suicide.

 

So, what does this have to do with Leukemia and CML? Well, the black fish had been missing for 6-8 months now. We see Hoover of course (Since he's white and about 18 inches), and most of the smaller fish, but we had pretty much written the black one off as Heron food. But then just this past weekend, the black one was not only spotted, he was swimming around with everyone else, like he's never been gone.

 

I'm still trying to figure out how he avoided being spotted all this time ? My only guess is that he's been hiding under the stones we built as shelter/hiding places for them. But he's there, and doing quite well....I guess I realize CML is kind of like that too, you may be doing well on Gleevec and showing no signs, but it's always there, just out of sight. When you're doing well, you can almost forget that you have CML. I've tried to see if there are days that I don't think about it, but it always come back to that taking the 1 pill a day is my reminder. Since my dr. appointments are so far apart now (6 weeks seems a lifetime after going weekly), I don't have many outside reminders of my condition. And I truly believe that if it wasn't for the pill, I probably could go a day and not thing about it. Just as our black koi, he's out of sight, but there somewhere lurking.

 

I never thought 3 months after dx that I could feel that way. I'm under no illusion that this is it, there are some major milestones coming up in the next couple of years, but I have been able to start looking forward again, and not let CML be consuming me. And I haven't had any major life urges, like driving to Puerto Vallarta or joining a country band...but we'll see, there is always time....

Recognizing Patterns

For the first couple of months on Gleevec (400 mg) I had some side effects, specifically some pressure behind the eyes, as well as some random muscle aches. It was weird to have a muscle ache in your big toe for example. But I was told that may happen.

 

After the first month, side effects were further apart, and less severe. Mostly they were present in the half hour after taking the pill. What I have noticed is that taking the pill after dinner lessens any side effects. Unfortunately both times I felt the worse, was after a wonderful meal prepared by my MIL that had a very rich gravy, with red wine. It was so good though that I may just live with the side effects.

 

Alex has turned 3 weeks old, and thank God for mothers. Cynthia's mother was here the first couple of weeks, and now my mother will be here for one more week. It's been so nice to have her here, I hope the one thing she does recognize is how normal our lives are. I guess, as normal as 2 boys under the age of 2 1/2 can be. Besides taking my pill (now down to 1-400 mg pill instead of 4-100 mg pills), there isn't much on a daily basis to report. I know I am blessed to be in this spot now, and I know this could change at any time.

 

Our lives are so normal, that most pressing on our minds is to get ready for Spring Outdoor co-ed soccer season. Our team has finally decided to start acting our ages, and will go over 30 for the first time. Not bad considering our average age is almost 40 that we managed to delay the inevitable. While I was hopeful that Tyler may be able to join us this season, it may still be a little while until he will grace us with his presence on the field. I think I'll know that life is normal when I watch Tyler receive the ball, do his patented move, and provide one of his sweet passes. At that moment, I will know that we got back to where we were meant to be.

3 month checkup on Gleevec and arrival of Alexander Tyler Loland

The actual 3 month checkup happened back on March 4th, but I was waiting for some results. The plan was to get a BCR_ABL quantitive test, and I had blood taken on the 27th of Feb so that the results were in on time. Unfortunately, they weren't available on the 4 th, and eventually come to find out due to some mix up, they went to the 'other' lab, and with molecular testing it's critical to sample at the same lab each time since results are subjective. So nothing much came out of that. Our plan still remains to get a BMA (Bone Marrow Aspiration) sometime at my 6 month in June (which will then give me an quantitive result), I'm just disappointed to not have a 3 month checkpoint to go by.

 

The good news is that my WBC is in the low 4 thousands. Technically it's on the low end, but patients on Gleevec tend to settle in the 3-5k range. Also, my immune fighting white blood cells, were in a good range, indicating that my body is producing healthy white blood cells. From what I understand, as long as all your blood parameters are within expected ranges, Gleevec is working as expected. We did schedule more blood work on April 15th.

 

The most important news I have is the arrival of our 2nd boy, Alexander Tyler Loland was born on March 2nd. He is a healthy 8 pounds 2 ounces little bundle of joy. Both he and Cynthia are doing well. People will immediately connect the middle name with our good friend Tyler, but the decision was made for all the other reasons than our common battle with CML. Both Cynthia and I have known Tyler for almost 8 years now, and he and Mandy have been such important parts of our lives. I think Tyler's soccer skills alone would have made him an excellent choice, I mean, who else can pull off the move like Tyler, even when you know it's coming, it gets you :) But there are so many other reason that make Tyler an excellent role model, and I'm sure he'll teach young Alexander some of his other talents such as card counting and golf.

 

I think overall Alex is easier than Christian was the first 2 weeks, although I think already having an active 2 year old makes everything a little harder. We've been blessed having Cynthia's mom with us since birth, so we've had experienced help. My own mother arrives in town this coming Wednesday, so we are greatly appreciative of all the help we are getting. It will also be the first time I see my mother since diagnosis so I expect this week to be somewhat emotional.

 

Speaking of Tyler, he is doing well, and we're crossing our fingers that he continues the road to improvement. These past couple of weeks have been difficult in following some other's battle with CML. Trish, a friend of a friend back in upstate NY, had to go through an emergency Liver transplant. Originally they feared a reaction with Gleevec, but now from what I understand, they may suspect Wilson's disease. The good news is that she is doing well and back home. Also, a very nice women over in Duvall (also with CML) learned that besides dealing with CML, she was diagnosed with MS. And Yanni learned in the last month that her type of CML is a mutation that Gleevec unfortunately is not a good fit for. She has already gone through some rounds of Chemo since the Leukemia got into the Central Nervous System. I had lunch with her and her significant other the other week, and I hope we can make it a monthly thing. When you get to know these people, you can’t just sit and watch them on their journey, you get drawn in and become emotionally invested. I just wish there was more I could do to help.

 

The one thing I have learned in a short time, that CML is pretty random in who is effected, but everyone I've had contact with is someone very special. I am astonished on how people can dig down deep to fight it and keep moving forward. Both Yanni and I have summited Mt. Rainier, so our analogies are often related to mountaineering. The one thing I remember best from my trips to the top, is that I never would have made it without my rope team. You may summit, but it's the team that got you there.

 

So now I go another 4 more weeks until I get tested again. I made a small switch to take my pills after dinner instead of before, and that seems to make a small difference in how my stomach feels shortly after dinner. Overall, feeling good, I think the tiredness is more related to our little own arriving, than CML.

2 month checkup on Gleevec

Today was my 2 month checkup. This has been the longest duration I've gone so far without any blood drawn or reviewing numbers, so I was naturally a little apprehensive. Leukemia is such a silent illness, that changes in your counts can change with no noticeable symptoms, until they get severe. This explains why some people only learn about their condition, when going to have some other injury or illness checked.

 

The good news is that I'm officially in Hematological remission  ! Given that 98% get there in a timely fashion it's not such a remarkable milestone, but it's great that it probably took me only 30 days since dx to get there. Dr P was expecting me to reach that by the 3rd month, so I'm ahead of the curve as he put it.

 

Those 90 blasts from last month’s tests were gone, Dr P said they were probably gone shortly after I left the building after my last appointment. I was slightly anemic before, but that was also back in normal range. Pretty much all my blood numbers were within range. My vitals were also great, blood pressure 120/70 and resting heart rate of 56. Lorraine the nurse said I was perfect, something I made sure to mention to Cynthia   Speaking of, Cynthia has simply been wonderful through these past 2 months. She has simply been amazing, and I can't imagine being able to get through the past 2 months without her. Her support during this period has been just the way she plays defense on the soccer field, solid as a rock. In fact, her nickname on the defense is 'the wall'.

 

Dr. P and I did discuss the next 4 months and testing, and what to expect. At my next visit in early March, we are going to conduct a  PCR test (quantitive test) that shows what percentage of cells out of a sample of 1 million, are considered Leukemia cells. This one is done on the blood, and will be our first look at how my cells are reacting to Gleevec. Our next milestone is to get to Cytogenetic remission, a test where they sample 20-30 cells, and none of them show Leukemia. After that, PCR starts telling us at a much more granular level. You'll start hearing mentions of Log - 3 in the blog, a major milestone for people with CML. That is where the PCR test shows less than 0.1% Leukemia cells for me (since my start point was 100%). 

 

At my 6 month checkup in June, we'll do another Bone Marrow Aspiration (BMA), which will show the level of Leukemia in the marrow as well. This will be another PCR test, so we’ll start seeing any progress at the lowest level possible.

 

This is all within normal treatment of CML. I think Dr. P is doing the 3 month PCR since I'm the type of person that needs data, and simply looking at the blood counts won't tell us much more going forward. I felt today was a very good discussion with Dr. P, and getting some insight into his own experience with treating CML. He's only had 1 patient out of more than 100 that he has had go to a bone marrow transplant. I've always known Tyler is special, I just never wanted him to be special in this way. Turns out that it's very seldom in CML these days to require a transplant, of course all this isn't doing anything for my friend.

 

Speaking of Tyler, all I know is what the Sunday entry had, they are just waiting for his numbers to start climbing, which will be a sign of Scott's marrow being integrated into Tyler’s body and going to work for him. I am looking forward to seeing him when it's possible, and look at him and know that he's cured of CML. As all of us, all I can do now is continue to pray and hope for that day to come as soon as possible.

 

For every 1 person that has to go through something as invasive as a transplant, there are 90 or more people, who continue to live normal lives and just have to take their pills each day. Lot of my information is from the internet, and he pointed out that it's a dangerous source since much of it is dated, and it's mostly the more serious situations that people open up to talk about. I guess he's right, if you the reader come back reading my blog in 12 months to find out that I took my pills that day, and other than a bad back from lifting Christian, I'm doing ok, I would expect you to stop reading past "today I ....".

 

I also played soccer again tonight, definately feeling the difference, and it's reassuring that part of my life has returned to a normal status. Now I just need to get into game shape, and shape in general, since I agreed to run the St. Patty day dash with our friends.

 

First soccer game since diagnosis

I played my first soccer game on Wednesday of this week, and there was a clear difference than before diagnosis. My last game in November, I could only play in 10 minute bursts, and I had shakes after the game. Now I know that the blood cell count was causing my body to not adjust the core temperature as it should have. I was a little nervous going back playing since in the back of my mind there is some kind of connection with soccer/field turf/cancer, but I also needed to get over that hurdle quickly. While it’s nice to be out on the pitch competing, it's mostly about the social aspect, and soccer has played such a large parts of both Cynthia and my lives.

 

When our friend Andy said he needed an extra guy for his men's team, I jumped at the opportunity. While my soccer touches suffered from not having kicked the ball in 2 months, I felt much better on the field, managing to recover much more quickly after runs, and my temperature stayed great all the way through the night. Clearly the Gleevec is working, and my body has been responding well. Side effects are virtually non-existent, and besides simply reminding myself about the daily pills, CML has no physical impact on my daily life. I think emotionally it will take a little longer before I can go a day without thinking about this, but that day will come, I know it. This week has been especially hard, with Tyler's transplant on Tuesday and constantly thinking about how he's doing.

 

As with climbing mountains, you take a step at a time, and just keep moving forward.

 

PS. 2 days later and I'm still sore from the game, it's nice to feel 'normal' again

Tomorrow is Tyler's transplant day

I've had difficulty focusing today, tomorrow is Tyler's transplant day. I've seen so many good stories about transplants that I'm positive that things will go better than expected, and he will start the road to recovery. If you haven't followed Tyler's story lately, I highly encourage you to check out the latest on his blog .

 

I'd ask everyone to take a moment and either say a prayer for Tyler, or think positive thoughts. I'd also like to include mention of Scott, none of this would be possible without Tyler's father who is the donor. Let's all hope that everything goes well.