Archives: November 2003
Sat Nov 29, 2003
The pain, for the most part, has been pretty managble. I am at the full inteferon dose since Monday so we wait and see. I did not get a bone biopsy because it would not change the course of treatment at the moment. The German study seen results in about a 4 week or so period once at the full dosages. I suspect 1st of the year I will get "tapped".
My days are up a down now--compliments of the interferon. We try to run with the good ones but we don't know when they present themselves--then its a logistics scramble to actually get out of the house....nothing new to those that have toddlers.
Thanksgiving was nice. For the first time in history I did not finish my first plate...very sad. I, however, did take a raincheck from the various chefs.
Got a new suit so I am styling and profiling for RDA's holiday party. As always, zero to shit in seconds in this household so fingers are crossed that I will make it this Saturday.
Hope everyone had a great Thanksgiving and GO DONS!
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Sun Nov 23, 2003
Here we go again . . .
A long lost friend, the severe right hip pain, reared its head on Friday. It did not quite feel like the Interferon induced joint pain. Friday night it lite up. Popped an Oxycodone. Did not sleep Friday night. Popped another Oxy (fresh supply from Rush), late morning. The pain broke late Saturday afternoon. I have been on limited movement duty so I don't flare things up. Dr. Jones, who I was in contact with on Friday and Saturday says I can't get in on the weekend for a Biopsy. He is fully in the camp that my bones don't shovel sh#t--read...good indicator that something bad is going on.
I have been fairly pain free on Sunday but I can feel it echoing when I walk on sit funny. We are going to reconvene Monday morning to see what the next steps are. I am not sure if a Biopsy even changes the course of treatment if the Leukemia numbers have started to rise. Mentally, if the counts have dropped since the last one, that would be cool but not sure the pain tradeoff of the Biopsy is worth it. Thankfully the pain broke, I only had to take two pain pills and I am still at home. Sweet. The pattern last year for this anniversary pain is that it would come and go....about every 4 to 6 days or if I do something to fire it up.
On the lighter side, we visited a friend from work on Friday who has a boy a little older than Patrick. They played hard and in fact, Patrick's playmate closed the visit headng to the emergency room for a few stiches...the match, fyi, ended in a draw...Patrick had the poundage over the challenger who had the experience and quickness. Round II next month???
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Mon Nov 17, 2003
Interferon, Flu and Cheesy Lights, oh my . . .
I have been remiss in my journal updates so I will give the monster one. Thanks to all those who emailed me directly wondering what gives!
Here is the skinny from the marrow tests and the next steps. The biopsy showed a 50% reduction in the leukemia cells down to 23% of the cell blasts are the diseased ones. This is decent news. It could have gone the other way or stayed the same. Dr. Jones feels this is the Gleevec and some Graft VS Tumor effect although there is no physical evidence of GVHD (rash, elevated liver enzymes). I had a skin biopsy from my chest which showed no detectable Graft VS Host Disease as well. If it was positive, then we would have stayed the course with the Gleevec only. Since it was negative, I started taking shots of Interferon; a naturally occurring protein in the body that is part of the immunological cascade (cytokines, etc. for those remembering biology). So you ask … wassup with the Interferon? There have been some promising results in Germany published this year that Dr. Jones concurs with and is following. Here is the abstract of the article. It is available at Nature for a fee…the cost of science.
Efficacy and safety of Gleevec in combination with interferon-alpha (IFN-alpha) in Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ALL)
Gleevec has marked antileukemic activity in advanced Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ALL), but secondary resistance develops rapidly, reflecting the limitations of single-agent therapy. Experimental data suggest that interferon- (IFN-alpha) enhances the antileukemic activity of Gleevec. We therefore examined combined Gleevec and low-dose IFN-alpha in six patients with Ph+ALL who were ineligible for stem cell transplantation. All patients had received Gleevec for 0.5-4.8 months prior to IFN-alpha, for relapsed (n=3) or refractory (n=1) Ph+ALL or as an alternative to chemotherapy following severe treatment-related toxicity (n=2). Five patients were in hematologic remission (CR) with minimal residual disease (MRD+), one patient was refractory to Gleevec. Four of the five MRD+ patients are alive in CR after a median treatment duration of 20 (11-21) months. Two of these patients are in continuous CR 21 months after Gleevec was initiated, while the other two patients experienced an isolated meningeal relapse that was successfully treated with additional intrathecal chemotherapy. Sustained molecular remissions were achieved in three patients and are ongoing 13 and 10.5 months after central nervous system (CNS) relapse and 6 months after starting concurrent IFN-alpha and Gleevec, respectively. Marrow relapse occurred in one of the five MRD+ patients. Combination treatment was associated with a complete marrow response of 5 months duration in the Gleevec-refractory patient. Gleevec combined with low-dose IFN-alpha may achieve prolonged hematologic and molecular remissions in a subset of patients with advanced Ph+ALL, who are not candidates for allogeneic SCT. CNS prophylaxis is necessary and may enhance the antileukemic activity of Gleevec and IFN-alpha.
What is interesting is that the above patients did not have transplants, they were relying on there own immune system to get stimulated by the Interferon and attack the leukemia that presents itself more prominently because of the Gleevec. So, as I view it, I already should have a fired up, donated immune system that just needs a little kick in the butt. Fingers crossed as usual.
I visit Hopkins once a week now that I have been officially discharged from the PROGRAM. Marcy and I feel like we are flying by the seat of our pants. We are well trained now so we should do all right. The worst thing now is my counts are next to zero so I am very susceptible to infection. Dr. Jones is much more cavalier regarding this then the ladies of IPOP. We are going to hang out somewhere in the middle with regards to safety and such. I am hoping to hit my company holiday party which does not offend any of the religions that are currently praying for me.
What have we been up to? The first week of interferon was tough…flu like symptoms and bad nausea the next day (the shots are M W F ). We went to Ocean City, MD with my father and Kathy. They scored a nice 2 bedroom condo with a den. Cool with the kids and all. For those in the OC know…it is the festival of lights now—a profoundly, cheesy spectacle of trailer park Christmas decorations. Amazingly, a huge money maker for the town…not sure what it says about the visitors. Things went pretty well with the kids, my parents were out of control, however.
This week we jack up the dosage of interferon. Hopefully, the bad flu like crap I had does not rear its head again. We hit Hopkins on Wed. for some blood work and then Dr. Jones on Thursday and possibly blood and platelets.
Sorry for the long post but it has been a few weeks and wanted to get all caught up and stop those people emailing me wanting the juicy details they have come to expect..
By the way, I think I am officially Getting-My-Eat-On according to Marcy. It is about time. Personally, I think I have a ways to go yet.
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Tue Nov 04, 2003
Gary was supposed to get a bone marrow biopsy on Friday, but Dr. Jones wanted it done exactly on Day 60 post-transplant. That was today. Despite 15 mg of Oxycodone, Gary rated today's "ass-tap" as OFF THE CHARTS on the pain scale. Not only that, the narcotics make him sick, so he has spent the remainder of the day throwing up. Better days tomorrow.
We should get some preliminary results tonight and more definitive results by Thursday. We are planning a meeting with Dr. Jones after all the bone marrow results are in to get a new state-of-the-union and better define the action plan for Gary's future health. Let's all pray for clear (or clear enough) bone marrow results.
Galloween VIII : The Parenting Years. We took the kids trick or treating in our friends' (Karen and John Zarubaiko) neighborhood. They live in a very friendly townhome community with a high concentration of kids which of couse equals GOOD CANDY. Patrick and Libby had a great time and I have been raiding the loot ever since (For quality control purposes only. A good parent must know what their child is eating...)
We don't have to go to Hopkins tomorrow, so maybe if Gary is feeling better we can get out and do something (like a trip to Costco Warehouse. Man, life can get pretty exciting) Gary's counts are very low due to the high levels of Gleevec he is taking. He got two units of blood today and a platelet infusion may be in the near future. Hopefully the good cells that we hope his body is producing (thanks to his transplanted cells) will soon overtake the suppressing effects of the Gleevec and his counts will bounce back. And ALL of the leukemia will be left in the dust!
Libby is an offical toddler now and is starting to really walk around. We haven't decided what the devasting effects of this new skill will be, but we are quickly becoming afraid of her. She's trouble, I tell you, and should be feared.
Love to all--
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