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June 24 June 24 - 2 week checkup on Sprycel and Mutation reportThe 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. June 11 June 11 - There has never been a better time to join the registryThe National Bone Marrow registry is running a special offer to registry for FREE between now and June 22nd. Please don't wait to take advantage of this generous offer and add yourself to the registry.
I have searched the registry myself to see how many potential matches there are out there (I was registered before I was diagnosed so I got my HLA typing). The more people register, the better chance there is to find a match for everyone that needs it. While there is still good chance that I would have a sibling match, I may have to depend on the kindness of a stranger if I end up failing on Sprycel.
Getting registered couldn't be easier. They simply swab the inside of your cheeks, and you send them back the kit. Join NowWhen you join the Be The Match RegistrySM, you become part of every patient's search for a bone marrow donor. You could be the one to save a life. And now, during the Be The Match Marrowthon, you can join online for free June 8 - 22, while funding remains. Our Marrowthon goal is to add 46,000 new members to the registry. Be one of them! When you join, you can also choose to make a financial contribution. It costs about $100 to add a donor to the registry. Your tax-deductible gift in any amount creates the opportunity for more donors to join. It's easy to join the Be The Match Registry:
June 08 June 8th - When 400 mg Gleevec isn't enough...Got my long awaited results back from Dr. P today, and unfortunately they were not very good. While 400 mg of Gleevec has had some impact, I'm not responding as well as we had hoped. Basically I'm still 20/20 on the cytogenetic test, 150/200 on the FISH test (from diagnosis of 198/200) and 7 on the PCR, down from 14 at time of diagnosis. They are running mutation tests, to see if that is the root of this. I should know those results in a couple of weeks.
I am very disapointed, as was my doctor. Given my great response to get all blood work quickly under control, it hasn't had the desired effect on the root cause. My analogy is that the lawn looks great, but there are a lot of seeds that are considered weeds still lurking.
We're meeting on Wednesday of this week to talk about switching to Sprycel, a 2nd generation drug. It is similar to Gleevec, just more effective, and works on mutations as well. I'm off Gleevec until Wednesday since it's good to give the body some time clear out the old medicine.
Just as I had become more comfortable with being on Gleevec, it's throws me a curveball. I'll just have to learn how to hit the deuce.
June 04 June 4th - Of course we need a graphA good friend today pointed out that I hadn't printed out a chart lately. He knows me too well, here is the chart that I'm tracking for white and red blood cells. I am also tracking Hemoglobin, which from what I'm learning has a direct correlation with my energy level. Personally I find it fascinating that I can see what my energy level is from a table. The fields in green are those that are within acceptable levels.
 June 01 June 1st - 6 Month Check upToday is a few days short of my 6 month anniversary of being diagnosed. I can safely say, it's a date in my life I could surely do without. As part of the 6 month check up, is the first BMA (Bone Marrow Aspiration) since being diagnosed. This involves giving me a local on the hip bone, and some other meds to mask the pain. I opt for the lollipop, not sure what's in there, but it seems to do the job.
Having done this once already, I had a lot of anxiety this time about what I was about to go through. Unlike the first time where there was no warning that this was going to happen, I've had 6 weeks of knowing the exact date. The last 2 weeks were especially hard, but at least the sampling of the marrow is now complete. Now comes the waiting game, it will be 7-10 days before all the results come in.
This is a whole cocktail of tests.
There is the Cytogenetic test that samples 20 cells. If you are 0/20, you are considered in Cytogenetic Remission (basically level 2 out of 3). Since it only samples 20 cells, it's a high level indicator. At my initial test 6 months ago, I was 20/20 on Leukemia, so it will be interesting to compare.
Second test is the FISH test, which samples 200-300 cells from either the blood or the bone marrow, and gives you a percentage of how many of those are leukemia cells.
Third test is the PCR, which will be done on both the blood and marrow. This test is the needle in the haystack test as Dr. P said, it will test 1 million cells and give a quantitive number on how many of the cells. It's the most sensitive test available. The reason to perform the test on both blood and marrow, is that it will establish a correlation. With this, there is a chance that in the future there won't be as much a need to do a BMA, since the PCR test can be done on the blood. In the past, treatment included getting a BMA once a year, but it's moving away from that if the PCR on the blood show a sufficient low level. That was kind of exciting news.
What I did get back today, is that my White Blood Cell count was 4.59 k, which is slightly lower than last time. But it's a little higher than the time before then, so I think we may be settling into a sweet spot, with a range between 4 and 5k. This is totally normal for patients on Gleevec. One a side note, I did notice that I get a Hemoglobin number, which I hadn't really been tracking before. But from what I've learned, it a blood cell that allows the carrying of oxygen around to the muscles. So basically, I translate that to an energy number. Now what is interesting about that, is that it's up 50% over since diagnosis, which correlates to the higher energy I have had. I can really play entire soccer games now, which I couldn't just 6 months ago.
Now it's just about waiting for the results to come in, which is not one of my strong points is...simply waiting... |
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