Yesterday, March 31st, Christi and I headed up to NIH to do my initial blood screening and talk to one of the study nurses about study details and logistics.
During the trip in the car, Christi read through the trial description and all the drug warning information on Rituximab. Looks like we'll have to put off trying to have another kid for a year, but that's okay, I think we'll want things to settle down before we try again anyway. Risk of sterility is a possibility with the chemo, but I've already mitigated that issue.
NIH is a huge facility. There are probably 90 buildings overall. We headed to Bldg. 10, the Clinical Center, which is probably the biggest building on the campus. I was overwhelmed initially. NIH is a secure facility. When you arrive, you have to enter at the visitor gate, exit your vehicle, which is searched for contraband while you go through a security line like you're at an airport. Anyway, once I got to the Clinical Center, I headed to the Phlebotomy Lab where they drew my blood. It's a busy place. First you get in line and get a number, like at the DMV, then you sit and wait for your number to be called.
Once they call you, you're directed to one of 10 lab stations. Once seated, you feel surrounded -- every sense amplified. My orders hadn't been received yet, so the technician left me in the booth and left to track them down while I listened to the little guy 3 booths down scream in terror as his blood was drawn. Nothing you hadn't heard before at the physician's office, but somehow being there just increased your level of sympathy. He passed my booth as he was leaving, tears running down his face, and I could see how all the blood vessels in the skin of his checks were visible to the naked eye -- his skin thinned and reddened, not from his screaming but from his underlying condition.
After 10 minutes, the technician returned with my orders, pulled 7 green tubes and 1 purple one. Once all the tubes were filled, she handed me a bag with the 7 green tubes and said "You need to take these to the clinic on the 13th floor." What kind of hospital has a 13th floor? Don't they know that's bad luck? That's why all the hotels go from 12 to 14, skipping 13!
Once we got to the 13th floor, I entered the clinic, went up to the desk and said "The lady downstairs said you'd give me $20 for this bag of blood" to the man and woman seated there. He smiled and said, "$20, is that all? You should hold out for $100", then the lady next to him told me to take it down the hallway and put it on the counter next to the sink in the room on the right.
I dropped off my blood, then called one of the study nurses to let her know I was there. Two of them showed up -- nurse R and nurse B. After introducing ourselves, nurse B headed off and nurse R stayed to discuss the trial and answer our questions. After talking for awhile, nurse R retrieved the CBC results. My platelets had improved over the past week, climbing from 85 to 99. That was very exciting to me. Maybe my low sugar diet and supplements are working. The white blood count (WBC) had dropped, which startled me at first, but then I thought "The WBC includes the hairy cells, so maybe the drop is because there isn't enough sugar to feed them all" (cancer is a sugar feeder). Wishful thinking, I know, but anything is possible.
We discussed the study protocol. Since my platelets are below 100, I qualify for further evaluation and testing. These include MRI, CT scan, echocardiogram, etc. I go in for the MRI tomorrow night at 8:30. The others will be run from 4/20 to 4/22. If I pass those tests, then I'll be admitted on the 22nd and go through 5 days of chemo. The study is randomized, so I may or may not receive the Rituximab. I'm opting to go in-patient because it's their standard practice and I fear that rocking the boat may cause chaos. Likewise, once I'm an in-patient, short-term disability will kick in right away, and the logistical issues surrounding my low WBC from chemo and Claire's daily germ party at day care will be eliminated.
The chemotherapy, a drug called Cladribine (aka 2-cda), is going to knock down all my blood counts and make me prone to infections for a few days, but if I don't get treatment, I'll either hemorage to death or get a fatal infection anyway. Unlike the 24/7 slow drip approach that my hematologist uses, the NIH study is going to use an IV infusion. They'll still install a peripherally inserted central cather (PICC) from a vein in my bicep up to my heart so that my vein won't be damaged by the drug's toxicity. The volume of blood in the heart will act to immediately dilute the drug as it enters. The drug will be administered over 5 days, 4 hours per day. Based on posts from patients who've gone this route, I'll feel very lethargic by the 3rd day as my RBC goes down. Most patients experience a high fever (~100) as their white blood cells are destroyed. This lasts about 48 hours. Very few infections have been documented, but they do happen, and are largely responsible for the 3% fatality rate associated with Cladribine. Yet another reason why I'd rather be an in-patient.
Once the chemo is done, I'll head home and rest for another week. nurse R wasn't sure how long it would take before I could return to work. It's largely based on how long it takes for your WBC to get above 2.0. I'll ask some fellow HCL'ers what their experience has been and let you know.
Anyway, the good news is that for the most part, my blood counts appear to have stabilized or improved with the change in diet and supplements, and it looks like I'll be entering the trial on the 22nd if all goes well. If my blood counts were to show more visible improvement, I'd have to think twice about going through chemo. Let's hope this is the case. Once I finish compiling my recent data, I'll discuss it in detail in the next blog.
Cheers
During the trip in the car, Christi read through the trial description and all the drug warning information on Rituximab. Looks like we'll have to put off trying to have another kid for a year, but that's okay, I think we'll want things to settle down before we try again anyway. Risk of sterility is a possibility with the chemo, but I've already mitigated that issue.
NIH is a huge facility. There are probably 90 buildings overall. We headed to Bldg. 10, the Clinical Center, which is probably the biggest building on the campus. I was overwhelmed initially. NIH is a secure facility. When you arrive, you have to enter at the visitor gate, exit your vehicle, which is searched for contraband while you go through a security line like you're at an airport. Anyway, once I got to the Clinical Center, I headed to the Phlebotomy Lab where they drew my blood. It's a busy place. First you get in line and get a number, like at the DMV, then you sit and wait for your number to be called.
Once they call you, you're directed to one of 10 lab stations. Once seated, you feel surrounded -- every sense amplified. My orders hadn't been received yet, so the technician left me in the booth and left to track them down while I listened to the little guy 3 booths down scream in terror as his blood was drawn. Nothing you hadn't heard before at the physician's office, but somehow being there just increased your level of sympathy. He passed my booth as he was leaving, tears running down his face, and I could see how all the blood vessels in the skin of his checks were visible to the naked eye -- his skin thinned and reddened, not from his screaming but from his underlying condition.
After 10 minutes, the technician returned with my orders, pulled 7 green tubes and 1 purple one. Once all the tubes were filled, she handed me a bag with the 7 green tubes and said "You need to take these to the clinic on the 13th floor." What kind of hospital has a 13th floor? Don't they know that's bad luck? That's why all the hotels go from 12 to 14, skipping 13!
Once we got to the 13th floor, I entered the clinic, went up to the desk and said "The lady downstairs said you'd give me $20 for this bag of blood" to the man and woman seated there. He smiled and said, "$20, is that all? You should hold out for $100", then the lady next to him told me to take it down the hallway and put it on the counter next to the sink in the room on the right.
I dropped off my blood, then called one of the study nurses to let her know I was there. Two of them showed up -- nurse R and nurse B. After introducing ourselves, nurse B headed off and nurse R stayed to discuss the trial and answer our questions. After talking for awhile, nurse R retrieved the CBC results. My platelets had improved over the past week, climbing from 85 to 99. That was very exciting to me. Maybe my low sugar diet and supplements are working. The white blood count (WBC) had dropped, which startled me at first, but then I thought "The WBC includes the hairy cells, so maybe the drop is because there isn't enough sugar to feed them all" (cancer is a sugar feeder). Wishful thinking, I know, but anything is possible.
We discussed the study protocol. Since my platelets are below 100, I qualify for further evaluation and testing. These include MRI, CT scan, echocardiogram, etc. I go in for the MRI tomorrow night at 8:30. The others will be run from 4/20 to 4/22. If I pass those tests, then I'll be admitted on the 22nd and go through 5 days of chemo. The study is randomized, so I may or may not receive the Rituximab. I'm opting to go in-patient because it's their standard practice and I fear that rocking the boat may cause chaos. Likewise, once I'm an in-patient, short-term disability will kick in right away, and the logistical issues surrounding my low WBC from chemo and Claire's daily germ party at day care will be eliminated.
The chemotherapy, a drug called Cladribine (aka 2-cda), is going to knock down all my blood counts and make me prone to infections for a few days, but if I don't get treatment, I'll either hemorage to death or get a fatal infection anyway. Unlike the 24/7 slow drip approach that my hematologist uses, the NIH study is going to use an IV infusion. They'll still install a peripherally inserted central cather (PICC) from a vein in my bicep up to my heart so that my vein won't be damaged by the drug's toxicity. The volume of blood in the heart will act to immediately dilute the drug as it enters. The drug will be administered over 5 days, 4 hours per day. Based on posts from patients who've gone this route, I'll feel very lethargic by the 3rd day as my RBC goes down. Most patients experience a high fever (~100) as their white blood cells are destroyed. This lasts about 48 hours. Very few infections have been documented, but they do happen, and are largely responsible for the 3% fatality rate associated with Cladribine. Yet another reason why I'd rather be an in-patient.
Once the chemo is done, I'll head home and rest for another week. nurse R wasn't sure how long it would take before I could return to work. It's largely based on how long it takes for your WBC to get above 2.0. I'll ask some fellow HCL'ers what their experience has been and let you know.
Anyway, the good news is that for the most part, my blood counts appear to have stabilized or improved with the change in diet and supplements, and it looks like I'll be entering the trial on the 22nd if all goes well. If my blood counts were to show more visible improvement, I'd have to think twice about going through chemo. Let's hope this is the case. Once I finish compiling my recent data, I'll discuss it in detail in the next blog.
Cheers
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