I started Rituxan biotherapy on Monday in accordance with the NIH protocol. Rituxan is a chimeric monoclonal antibody. The Rituxan chimera is a hybrid of antibodies from both human and murine (mouse) antibodies. The CD20 antigen (a unique protein found on B-cells and abundantly on HCL mutant B-cells) is injected into a mouse, encouraging the production of antibodies. Antibody producing cells are then isolated from the spleen of the animal. These are then combined with immortal cells called myeloma cells. This results in a cell line that will go on producing the antibody indefinitely. Further genetic engineering removes the elements of the mouse cell that would normally produce an immune (allergic) reaction if injected into a human.
One of the forms describing the treatment actually said not to receive it if you have reactions to mouse proteins. How would anybody know that? Although there was that time I had rat-on-a-stick at the 1988 Seoul Olympics...
This is the 6-month post-chemo biotherapy to treat minimal residual disease (MRD). I was fortunate in that my tumor burden is very low, so not a lot of tumor lysis and subsequent reaction was to be expected; hence, less reaction than those with higher burdens in the peripheral blood and marrow. The percentage of hairies in my flow cytometry tests are .2% peripheral and 4% marrow (fairly minscule compared to people who rely on Rituxan as a first line treatment because they don't respond to Cladribine).
I was admitted as an in-patient on Sunday and treatment started on Monday morning. About 7:30 am, a phlebotomist came up to my room and drew blood for the pre-treatment CBC, chem20 and several other tests. Later in the morning, my IV line was placed. Even though I have good veins, they put an order in with the procedures unit to place my IV line using ultrasound. The nurse put the gel on my arm, swiped my arm, picked a vein and placed the line in under a minute. She was able to see the position of the catheter the entire time, so I didn't have to worry about it running into the side of a vein wall or valve. Nice!
My nurse, who was great, reviewed the purpose of the drug and possible side effects, the most common of which are chills, shakes and fever. Pre-meds included Benadryl and Tylenol and the initial Rituxan dosage rate was very low. The going in plan was 12.5 units (can't recall the precise unit label) steady for the first 4 hours, up it to 25 units at hour 4, then increase by 25 units every half hour after that unless reactions were seen. I was great the first hour, then I started to feel mild chills. I tried to fight it, but once I curled up under a blanket, I gave myself away and my nurse decided it was time to give me Demerol after a mild scolding for not telling her sooner. Demerol's a wonder narcotic for knocking out chills (among other things). I was fine after 15 minutes and after that, things went really well.
I took another Benadryl/Tylenol cocktail at hour 4. 10 minutes after each dosage increase, my temperature would go up (max'd at 38.6 C) but it would settle back down to the 37 to 37.5 range before the next increase. Vitals were taken every half hour prior to the dosage increases. Blood pressure was generally in the 118/69 range, pulse was normal and oxygen was anywhere from 95% to 98%. I finished the treatment in 7.5 hours.
I highly recommend that anyone receiving Rituxan biotherapy for HCL discuss Demerol as a option with their doctors. I think I would have suffered a lot without it and think it may help a lot of people who've generally just been treated with high doses of Benadryl. Dr. K is generally available to discuss his results and opinions. I'm sure he'd be happy to talk with your doctor.
I was discharged the next day and feel great, although my counts definitely took a dive. Even though Rituxan targets the CD20 proteins on B-cells, there is generally a broad spectrum affect on all blood counts (at least with the initial cycle) because the immune system goes into a hyper-drive response mode in the presence of the invading mouse protein component of the antibody. I assume the mechanism is some type of elevated phagocytosis but don't know for sure.
One week prior to the Rituxan treatment, I went in for my second bone marrow aspiration in as many weeks. With 4% hairies in the aspirate, I'm really hoping they can get the clone from this one so they can perform the patient specific hyper-sensitive MRD test in the future (1 cell in 1 million vice 1 cell in 10 thousand) when attacking the disease with Rituxan will have the best chance of eradicating it.
In other news, my liver enzyme tests have been consistently high for the past 3 months, so I'm starting to become more concerned. Tests for hepatitis antibodies have all been negative (thank goodness) so one possible remaining optionis that it's a temporary drug reaction caused by the Bactrim. I wrote to Dr. K asking if we could investigate other antibiotics, and he was very receptive and recommended a once-monthly inhaled drug in lieu of the Bactrim. We'll see if that returns the liver enzyme levels to normal.
Residual gluten in additives to the food I eat may be another factor contributing to the elevated liver enzyme levels. Many celiacs have very high liver enzyme levels prior to diagnosis as do people who are gluten intolerant. While I avoid gluten as much as possible, I'm not diligent in avoiding it all the time.
Interestingly enough, the product description for Bactrim also describes the fact that it sometimes has bone marrow suppressive effects, and I've seen anecdotal discussions that some patients have severe adverse reactions when they combine Bactrim and caffeine. Now I'm wondering if Bactrim was suppressing my marrow response after chemotherapy, and my recent experiments with caffeine to lower TNFa actually counter-acted a possible immune suppression effect Bactrim had on my marrow (I know, I know -- crazy mad-scientist and his theories). It'll be interesting to see if switching to the alternate antibiotic causes a dramatic acceleration in my future blood count responses.
Here're some plots of my most recent blood counts. Once again, my neutrophil count dropped when I reduced my coffee and chamomile intake in hopes of lowering my liver enzyme levels in preparation for the Rituxan therapy. Of course one day after Rituxan, everything took a nose dive, especially the lymphocytes. That's good, because the nasty hairies are part of the lymphocyte line of cells.
I've got seven cycles (1 per week) of Rituxan remaining. I'll keep you posted.
One of the forms describing the treatment actually said not to receive it if you have reactions to mouse proteins. How would anybody know that? Although there was that time I had rat-on-a-stick at the 1988 Seoul Olympics...
This is the 6-month post-chemo biotherapy to treat minimal residual disease (MRD). I was fortunate in that my tumor burden is very low, so not a lot of tumor lysis and subsequent reaction was to be expected; hence, less reaction than those with higher burdens in the peripheral blood and marrow. The percentage of hairies in my flow cytometry tests are .2% peripheral and 4% marrow (fairly minscule compared to people who rely on Rituxan as a first line treatment because they don't respond to Cladribine).
I was admitted as an in-patient on Sunday and treatment started on Monday morning. About 7:30 am, a phlebotomist came up to my room and drew blood for the pre-treatment CBC, chem20 and several other tests. Later in the morning, my IV line was placed. Even though I have good veins, they put an order in with the procedures unit to place my IV line using ultrasound. The nurse put the gel on my arm, swiped my arm, picked a vein and placed the line in under a minute. She was able to see the position of the catheter the entire time, so I didn't have to worry about it running into the side of a vein wall or valve. Nice!
My nurse, who was great, reviewed the purpose of the drug and possible side effects, the most common of which are chills, shakes and fever. Pre-meds included Benadryl and Tylenol and the initial Rituxan dosage rate was very low. The going in plan was 12.5 units (can't recall the precise unit label) steady for the first 4 hours, up it to 25 units at hour 4, then increase by 25 units every half hour after that unless reactions were seen. I was great the first hour, then I started to feel mild chills. I tried to fight it, but once I curled up under a blanket, I gave myself away and my nurse decided it was time to give me Demerol after a mild scolding for not telling her sooner. Demerol's a wonder narcotic for knocking out chills (among other things). I was fine after 15 minutes and after that, things went really well.
I took another Benadryl/Tylenol cocktail at hour 4. 10 minutes after each dosage increase, my temperature would go up (max'd at 38.6 C) but it would settle back down to the 37 to 37.5 range before the next increase. Vitals were taken every half hour prior to the dosage increases. Blood pressure was generally in the 118/69 range, pulse was normal and oxygen was anywhere from 95% to 98%. I finished the treatment in 7.5 hours.
I highly recommend that anyone receiving Rituxan biotherapy for HCL discuss Demerol as a option with their doctors. I think I would have suffered a lot without it and think it may help a lot of people who've generally just been treated with high doses of Benadryl. Dr. K is generally available to discuss his results and opinions. I'm sure he'd be happy to talk with your doctor.
I was discharged the next day and feel great, although my counts definitely took a dive. Even though Rituxan targets the CD20 proteins on B-cells, there is generally a broad spectrum affect on all blood counts (at least with the initial cycle) because the immune system goes into a hyper-drive response mode in the presence of the invading mouse protein component of the antibody. I assume the mechanism is some type of elevated phagocytosis but don't know for sure.
One week prior to the Rituxan treatment, I went in for my second bone marrow aspiration in as many weeks. With 4% hairies in the aspirate, I'm really hoping they can get the clone from this one so they can perform the patient specific hyper-sensitive MRD test in the future (1 cell in 1 million vice 1 cell in 10 thousand) when attacking the disease with Rituxan will have the best chance of eradicating it.
In other news, my liver enzyme tests have been consistently high for the past 3 months, so I'm starting to become more concerned. Tests for hepatitis antibodies have all been negative (thank goodness) so one possible remaining optionis that it's a temporary drug reaction caused by the Bactrim. I wrote to Dr. K asking if we could investigate other antibiotics, and he was very receptive and recommended a once-monthly inhaled drug in lieu of the Bactrim. We'll see if that returns the liver enzyme levels to normal.
Residual gluten in additives to the food I eat may be another factor contributing to the elevated liver enzyme levels. Many celiacs have very high liver enzyme levels prior to diagnosis as do people who are gluten intolerant. While I avoid gluten as much as possible, I'm not diligent in avoiding it all the time.
Interestingly enough, the product description for Bactrim also describes the fact that it sometimes has bone marrow suppressive effects, and I've seen anecdotal discussions that some patients have severe adverse reactions when they combine Bactrim and caffeine. Now I'm wondering if Bactrim was suppressing my marrow response after chemotherapy, and my recent experiments with caffeine to lower TNFa actually counter-acted a possible immune suppression effect Bactrim had on my marrow (I know, I know -- crazy mad-scientist and his theories). It'll be interesting to see if switching to the alternate antibiotic causes a dramatic acceleration in my future blood count responses.
Here're some plots of my most recent blood counts. Once again, my neutrophil count dropped when I reduced my coffee and chamomile intake in hopes of lowering my liver enzyme levels in preparation for the Rituxan therapy. Of course one day after Rituxan, everything took a nose dive, especially the lymphocytes. That's good, because the nasty hairies are part of the lymphocyte line of cells.
I've got seven cycles (1 per week) of Rituxan remaining. I'll keep you posted.
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