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 :)