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....