The Cladribine (chemo) treatments are done. Overall, I felt more sensitivity when hooked up to the saline solution than the actual chemo, and I'm not kidding. I actually feel full of energy right now, but that's not to say that my counts haven't been affected -- they have.
Lots of blood was drawn before today's treatment. Dr. K wants to see if any of my antibody levels have been affected by the Cladribine. Apparently, my blood is very interesting. I should have patented my gene sequences before I signed up (ha ha). As mentioned in Paul Edward's HCL blog, this disease was involved in the first case of human gene patent rights. Recalling the major details, I believe doctors at The University of California kept asking an HCL patient to return to give more blood under somewhat false pretenses but all the while, they sequenced his genes, patented them and then made money off it. The patient sued to have the rights to his own gene sequence and future profits and lost. Anyway, I only care about staying alive, so the CBC results are what matters.
Here's a before and after look at my blood counts based on levels taken right before chemo started and after Day 4:
Cell type, Pre-Chemo Value, Day 4 Value, Normal Range, Percent Change
WBC 3.34 2.38 [ 4.23 to 9.07] -28.7
RBC 4.21 3.93 [ 4.63 to 6.08] -6
HGB 13.6 12.6 [ 13.7 to 17.5] -7.4
HCT 39.5 36.0 [ 40.1 to 51 ] -8.9
MCV 93.8 91.6 [ 79.0 to 92.2] -2.3
RDW 14.2 13.9 [ 11.6 to 14.4] -2.1
Platelet Count 87 89 [161 to 347] +2.3
Neutrophils 31.4 48.3 [ 34.0 to 67.9 ] +54
Lymphocytes 63.2 47.1 [ 21.8 to 53.1] -25.5
Monocytes 4.5 2.5 [ 5.3 to 12.2] -44.4
ANC 1.05 1.15 [ 1.78 to 5.38] +10
ALC 2.11 1.12 [ 1.32 to 3.57] -47
AMC .15 .06 [ .30 to .82 ] -60
The important point here is that my Neutrophil count and platelets have remained rock steady, so it doesn't look like I'm at risk for extreme neutropenia or hemorrhaging. Let's hope this holds out as I recover. Also, my hemoglobin and RBC, although low, are in pretty good shape and should return to normal soon.
I'll have weekly CBCs for the next few months and another BMB on May 2oth. Let's pray it shows significant remission. Yet another BMB will be taken on October 23rd. If hairy cells are again detected, I'll receive 8 weeks of Rituximab treatments (1 per week), but this won't occur sooner than October 23rd because the effects of Cladribine continue to be significant for about 6 months.
Monday, April 27, 2009
Chemo Day 4 -- See Day 3
Chemo day 4 -- please see day 3, then add a nap between 5 and 7 pm.
I go in today at 12 for my last chemo and to get blood drawn. Woohoo!
I go in today at 12 for my last chemo and to get blood drawn. Woohoo!
Saturday, April 25, 2009
Chemo -- 3 down, 2 to go
Day 3 came and went without a hitch. I drank plenty of water in the morning and got to the day hospital at 12:00. The nurse unwrapped the ace bandage and tested the IV for blood flow with a syringe of saline. At first it didn't flow, but when she pressed on the vein slightly, everything worked fine. She hooked up the Cladribine and I was off and running by quarter 'til one.
Everything went great and I feel pretty good, so I must still have plenty of red blood cells even if my whites are down.
Hopefully the chemo is doing its job.
Everything went great and I feel pretty good, so I must still have plenty of red blood cells even if my whites are down.
Hopefully the chemo is doing its job.
Friday, April 24, 2009
Chemo Day 2 -- Ouch
Note to self: drink lots of water before IV placement.
I lost track of time this morning and forgot to drink plenty of fluids before chemo today. That's bad. If you're dehydrated when getting an IV placed, the valves in your veins are much more sensitive to fluid pulling in the wrong direction and they'll seal tight like the vaults at Fort Knox. And when the valves seal up, the catheter in the IV usually won't go in. If it does go in, the fluid in the IV won't flow. I found this out the hard way 4 times today. 1 1/2 hours and 5 cups of water later, we finally had success on the 5th try. If you already guessed that I didn't have the IV taken out after today's treatment, you're right. It's bundled nicely in neon-blue ace-wrap to prevent it from ripping out. Let's hope I don't toss and turn too much tonight. Tomorrow, I'll wrap it up nice and tight in Saran wrap a couple times and then shower. Ya gotta do what ya gotta do.
Other than that, everything went well today. The food at the hospital was slightly better, and I read a good joke, too:
Q: Do you know what the difference between an oral and rectal thermometer is?
A: The taste.
Okay, sorry to gross you out, but man that made me laugh.
Christi and I picked up Claire from daycare today, and it was great to see her again. Grandma and Papa took good care of her Wednesday and Thursday night while Christi and I adapted to the on-the-fly schedule changes needed to enter the trial. Thanks Grandma and Papa! The first thing Claire wanted to do when she got home was sweep the floor with the broom and sing "Itsy Bitsy Spider." After dinner, we went for a nice walk.
My neutrophils fell to 1.0 on Wednesday, so they're likely even lower now that I've had 2 rounds of chemo. I should get a complete report on Monday, the last day of chemo. The real danger zone with neutrophils is 0.5 or lower. At that point, no eating out, cook food thoroughly, no raw vegetables, and no fish. Hopefully, I won't drop below .7. Regardless, I'm avoiding crowds and contact with others for the time being (especially now that the Mexican swine flu has me freaked out). My doctor has prescribed an antibiotic, Bactrim, that I'm to take for the next 3 to 6 months on Mondays, Wednesdays and Fridays at 9 am. It's intended to prevent certain bronchial infections that would otherwise be devestating if not stopped early on.
That's all for today. I still haven't felt many side effects from the chemo. I expect that after tomorrow, some serious lethargy will start to kick in, but we'll hope not.
Til tomorrow
I lost track of time this morning and forgot to drink plenty of fluids before chemo today. That's bad. If you're dehydrated when getting an IV placed, the valves in your veins are much more sensitive to fluid pulling in the wrong direction and they'll seal tight like the vaults at Fort Knox. And when the valves seal up, the catheter in the IV usually won't go in. If it does go in, the fluid in the IV won't flow. I found this out the hard way 4 times today. 1 1/2 hours and 5 cups of water later, we finally had success on the 5th try. If you already guessed that I didn't have the IV taken out after today's treatment, you're right. It's bundled nicely in neon-blue ace-wrap to prevent it from ripping out. Let's hope I don't toss and turn too much tonight. Tomorrow, I'll wrap it up nice and tight in Saran wrap a couple times and then shower. Ya gotta do what ya gotta do.
Other than that, everything went well today. The food at the hospital was slightly better, and I read a good joke, too:
Q: Do you know what the difference between an oral and rectal thermometer is?
A: The taste.
Okay, sorry to gross you out, but man that made me laugh.
Christi and I picked up Claire from daycare today, and it was great to see her again. Grandma and Papa took good care of her Wednesday and Thursday night while Christi and I adapted to the on-the-fly schedule changes needed to enter the trial. Thanks Grandma and Papa! The first thing Claire wanted to do when she got home was sweep the floor with the broom and sing "Itsy Bitsy Spider." After dinner, we went for a nice walk.
My neutrophils fell to 1.0 on Wednesday, so they're likely even lower now that I've had 2 rounds of chemo. I should get a complete report on Monday, the last day of chemo. The real danger zone with neutrophils is 0.5 or lower. At that point, no eating out, cook food thoroughly, no raw vegetables, and no fish. Hopefully, I won't drop below .7. Regardless, I'm avoiding crowds and contact with others for the time being (especially now that the Mexican swine flu has me freaked out). My doctor has prescribed an antibiotic, Bactrim, that I'm to take for the next 3 to 6 months on Mondays, Wednesdays and Fridays at 9 am. It's intended to prevent certain bronchial infections that would otherwise be devestating if not stopped early on.
That's all for today. I still haven't felt many side effects from the chemo. I expect that after tomorrow, some serious lethargy will start to kick in, but we'll hope not.
Til tomorrow
Thursday, April 23, 2009
Chemo Day 1
This morning I called LabCorp to see if I could track down the H&E stain slide that they used for my original bone marrow biopsy (BMB) report. They could not find any record of me having a BMB in their database. I called my hemonc's office to see if they could provide me with their point-of-contact at LabCorp that they used to coordinate the original slide shipment. They couldn't find it. My hemonc's lab technician called LabCorp to see if he could make any progress, but LabCorp kept switching him back and forth and never connected him to the right person. Personal conclusion: LabCorp is a 3-ring circus and has a horrible electronic records capability. United Healthcare (my insurance) needs to switch to Quest Diagnostics. I'm going to write them a letter to that effect.
My hemonc did provide me with a copy of the original BMB report. In summary: "Hairy Cell Leukemia, extensive involvement (approx. 70%)." This means that 70 percent of my bone marrow is hairy cells. Although extensive, this isn't necessarily very high as far a treated cases of HCL go. It's not uncommon for patient's to have 90% involvement. My marrow still had plenty of "areas of preserved hematopoietic (stem cell) marrow present, including megakaryocytes (platelet precursors), erythroid, and myeloid cells. "Diffuse mild to moderate reticulin fibrosis [was] noted." These are strands sent out by the hairy cells that bind and pith the infiltrated marrow. This characteristic becomes more prevelant as the disease progresses. It will all resolve with the chemotherapy.
By the time I found the LabCorp pathologist contact information on the report, the other bone marrow core slides had finally arrived at NIH. My quest to find the original H&E stained core slide was no longer required, so Christi and I headed up to NIH. It took the better part of the afternoon before I was finally approved to enter the trial. I made one final trip to phlebotomy. Pete Townsend's "Give Blood" was playing in the background. Okay not really, but it was playing in my head. Once back in the clinic, I read and signed the protocol consent form and then waited to be randomized.
Randomized for Cladribine-only for the initial treatment with Rituximab to follow 6 months later at the onset of minimum residual disease (MRD), I was treated on an outpatient basis in the "day hospital". The IV insertion was easy. I had to wait with a saline drip while the initial prescription was filled. I verified the dosage rate, my mass and total dose in the IV solution at .15 mg/kg/day, 92 kg and 13.9 mg. The nurse set up the drip console settings, and I was off and running.
Treatment started at 5:25 pm. It took about 2 hours 10 minutes for all the Cladribine to drip into my veins, but I didn't feel any side effects or sensations. I ate while being treated, but the food was really awful, so when the treatment was over, Christi and I headed over to Jaleo to get tapas. (tapas always has a really good variety of gluten free low sugar menu items).
It's been 5 1/2 hours since Chemo started and, if anything, I feel as good or better than I did then. I'm sure the relief of not experiencing side effects has helped. I'm sure I'll feel worse in a few days.
Overall, it was a long but boring day...
and boring is good.
I'm hungry again...
and hungry is good too.
My hemonc did provide me with a copy of the original BMB report. In summary: "Hairy Cell Leukemia, extensive involvement (approx. 70%)." This means that 70 percent of my bone marrow is hairy cells. Although extensive, this isn't necessarily very high as far a treated cases of HCL go. It's not uncommon for patient's to have 90% involvement. My marrow still had plenty of "areas of preserved hematopoietic (stem cell) marrow present, including megakaryocytes (platelet precursors), erythroid, and myeloid cells. "Diffuse mild to moderate reticulin fibrosis [was] noted." These are strands sent out by the hairy cells that bind and pith the infiltrated marrow. This characteristic becomes more prevelant as the disease progresses. It will all resolve with the chemotherapy.
By the time I found the LabCorp pathologist contact information on the report, the other bone marrow core slides had finally arrived at NIH. My quest to find the original H&E stained core slide was no longer required, so Christi and I headed up to NIH. It took the better part of the afternoon before I was finally approved to enter the trial. I made one final trip to phlebotomy. Pete Townsend's "Give Blood" was playing in the background. Okay not really, but it was playing in my head. Once back in the clinic, I read and signed the protocol consent form and then waited to be randomized.
Randomized for Cladribine-only for the initial treatment with Rituximab to follow 6 months later at the onset of minimum residual disease (MRD), I was treated on an outpatient basis in the "day hospital". The IV insertion was easy. I had to wait with a saline drip while the initial prescription was filled. I verified the dosage rate, my mass and total dose in the IV solution at .15 mg/kg/day, 92 kg and 13.9 mg. The nurse set up the drip console settings, and I was off and running.
Treatment started at 5:25 pm. It took about 2 hours 10 minutes for all the Cladribine to drip into my veins, but I didn't feel any side effects or sensations. I ate while being treated, but the food was really awful, so when the treatment was over, Christi and I headed over to Jaleo to get tapas. (tapas always has a really good variety of gluten free low sugar menu items).
It's been 5 1/2 hours since Chemo started and, if anything, I feel as good or better than I did then. I'm sure the relief of not experiencing side effects has helped. I'm sure I'll feel worse in a few days.
Overall, it was a long but boring day...
and boring is good.
I'm hungry again...
and hungry is good too.
Tuesday, April 21, 2009
Big Day Tomorrow
All the major testing is done. I go up to NIH tomorrow at 1:30 with luggage in tow. They ordered some last minute blood tests for tomorrow before my clinic appointment with Dr. K at 2:30. That appointment is the last gating factor before I can be admitted and treated in the trial. If accepted, I'll then be told whether I randomized to Cladribine and Rituximab or Cladribine only, then the PICC will get installed. Fortunately, I was just told that I don't have to fast for the blood test and only have to fast 6 hours before the PICC is installed, so I can finally eat breakfast again.
If all goes well, I may only have to stay in the hospital for 2 days, then return home and do the remainder of the drug treatments on an outpatient basis.
Today's tests included an abdominal ultrasound. The lab technician was superb -- very fun to talk to and she liked explaining the physics of the device as she made the measurements. She told me how they can peform vascular exams with ultrasound now -- avoiding the IV contrast and radiation that were previously required with the CT scan. She examined the liver, spleen, kidneys, and gallbadder. My spleen measured over 1 cm smaller on the ultrasound than it did on the CT scan nearly 3 weeks ago. This was probably just due to the way I was positioned, but wouldn't it be great if it were due to a reduction in sequestered hairy cells?! I may never know for sure, but I'll ask Dr. K if that is a normal variance.
The coolest test had to be the echocardiogram -- it's basically an ultrasound of the heart. I got to see my valves moving and heart muscles pumping. It was fascinating technically, but didn't compare to the emotional rush the first time I saw Claire's heartbeat.
I want to thank everyone for all the well wishes, prayers and loving gestures you have made. They've truly humbled me, and I'm forever grateful. I can feel the energy of your prayers and thoughts and I know they are working. Regardless of our personal religious beliefs, we all share a common devine energy through our prayers and love for each other, which unites us as one family. I am blessed to have all of you as part of mine.
Love to all
Sola Virtus Invicta!
If all goes well, I may only have to stay in the hospital for 2 days, then return home and do the remainder of the drug treatments on an outpatient basis.
Today's tests included an abdominal ultrasound. The lab technician was superb -- very fun to talk to and she liked explaining the physics of the device as she made the measurements. She told me how they can peform vascular exams with ultrasound now -- avoiding the IV contrast and radiation that were previously required with the CT scan. She examined the liver, spleen, kidneys, and gallbadder. My spleen measured over 1 cm smaller on the ultrasound than it did on the CT scan nearly 3 weeks ago. This was probably just due to the way I was positioned, but wouldn't it be great if it were due to a reduction in sequestered hairy cells?! I may never know for sure, but I'll ask Dr. K if that is a normal variance.
The coolest test had to be the echocardiogram -- it's basically an ultrasound of the heart. I got to see my valves moving and heart muscles pumping. It was fascinating technically, but didn't compare to the emotional rush the first time I saw Claire's heartbeat.
I want to thank everyone for all the well wishes, prayers and loving gestures you have made. They've truly humbled me, and I'm forever grateful. I can feel the energy of your prayers and thoughts and I know they are working. Regardless of our personal religious beliefs, we all share a common devine energy through our prayers and love for each other, which unites us as one family. I am blessed to have all of you as part of mine.
Love to all
Sola Virtus Invicta!
Monday, April 20, 2009
Buckets 'O Fun
You knew I was going to make that the title for this post, didn't you? Among other things, I got my urine buckets today. In the immortal words of Forrest Gump, "That's all I've got to say about that."
Over the past month, my blood counts' declines are much less compared to the large decrease I experienced in February (relatively speaking), so I think my nutrition changes have helped slow things down. Platelets are at 83, and I haven't felt lightheaded in days, so I'm happy about that. My absolute neutrophil count is still above 1.25 but continuing to decline, so I'm anxious to get started with chemo before the chance of infection gets any worse. Urinalysis and blood chemistry were nearly perfect.
I didn't have to do a CT scan today because the prior one ordered by my hemonc was good enough for study purposes. The less radiation the better. My chest X-ray was typical for someone my age, and I haven't seen my EKG results yet. Total elapsed time for the EKG was about 3 minutes. It took longer to hook up all the probes than to make the measurement.
Total cholesterol is at 120, with HDL (good chol.) at 28 mg/dL and LDL (bad chol.) at 55 mg/dL. Compared to 30 and 85 on February 5th, it looks like my hairy buggers are having a roto-rooter feast, but of course my diet is very different now from what it was then. On the bright side, I suppose my pipes will be clean once I recover. It'll be interesting to see where these numbers go 6 months after chemotherapy.
I'm keeping this one quick. I go back tomorrow to turn in the bucket, get my abdominal ultrasound and an echocardiogram.
T-1 day and counting...
Over the past month, my blood counts' declines are much less compared to the large decrease I experienced in February (relatively speaking), so I think my nutrition changes have helped slow things down. Platelets are at 83, and I haven't felt lightheaded in days, so I'm happy about that. My absolute neutrophil count is still above 1.25 but continuing to decline, so I'm anxious to get started with chemo before the chance of infection gets any worse. Urinalysis and blood chemistry were nearly perfect.
I didn't have to do a CT scan today because the prior one ordered by my hemonc was good enough for study purposes. The less radiation the better. My chest X-ray was typical for someone my age, and I haven't seen my EKG results yet. Total elapsed time for the EKG was about 3 minutes. It took longer to hook up all the probes than to make the measurement.
Total cholesterol is at 120, with HDL (good chol.) at 28 mg/dL and LDL (bad chol.) at 55 mg/dL. Compared to 30 and 85 on February 5th, it looks like my hairy buggers are having a roto-rooter feast, but of course my diet is very different now from what it was then. On the bright side, I suppose my pipes will be clean once I recover. It'll be interesting to see where these numbers go 6 months after chemotherapy.
I'm keeping this one quick. I go back tomorrow to turn in the bucket, get my abdominal ultrasound and an echocardiogram.
T-1 day and counting...
Friday, April 17, 2009
The Workup
Next week's schedule arrived yesterday and it's quite a workup.
Starting midnight on Sunday, there's to be no eating and only moderate drinking of water. I've an appointment at the Phlebotomy lab at 9 am Monday morning for some more blood letting followed by a visit to ... The 13th Floor (pretend that text is undulating like the credits for a scary movie) where they'll sample my blood for hairy buggers. I've got a surprise waiting for them, though. You see I replaced my regular blood with Folger's instant crystals. They won't believe it's an instant!
After the blood letting, nurse R will bring me my "urine bucket". Oh joy! I get to collect pee for 24 hours to make sure my kidneys are functioning properly. Even if I could head back to work for a half day, I don't think the logistics of the "urine bucket" would work out too well. Right now, disturbing images of the homeless guy from "In Living Color" and his "pickle jar" are racing through my brain. Those of you who know what I'm talking about just had a disturbing laugh. Those of you who don't should be thankful. I just hope the bucket has a lid.
At 9:40, I head down to Radiology, chug a quick mix of strawberry flavored Barium (note: based on prior experience, it tastes more like @*!) and then get my CT scan. They'll inject contrast agent into my vein right before I go into the imager -- makes you feel all warm and cozy inside. I'm not a stranger to CT scans. I had my first one back in 1991 shortly after suffering debilitating migraines right after my first wedding. Funny how they started upon getting married and stopped after getting separated. Seriously though, I think it was the damn Liz Claiborne perfume she wore.
Next, I get an EKG. I've always wanted one ever since seeing episodes of Emergency! as a kid. I just thought the circumstances would be a bit more heroic, you know -- like collapsing after saving a bus full of orphans from falling off a cliff while Johnny Gage and Roy DeSoto show up just in the nick of time.
Monday wraps up with a chest X-ray. I expect my skin will soon glow in the dark with all the radiation I've gotten over the past two months. On the bright side, I won't have to turn on the light to fill my urine bucket in the middle of the night...
Tuesday isn't quite as busy. I start off with a ultrasound of my abdomen at 9:00 to check out the old spleen, followed by one last pee in "Ye Olde Urine Bucket" before handing it back to nurse R. I head over to Building 5 at 11 for an echocardiogram, then I'm done for the day.
On Wednesday, I suffer without food until I meet with Dr. K at 2:30 for my physical. If all goes well, I'll get admitted and the PICC line will get installed at 3:30. The meds will be administered shortly thereafter. If I'm selected for Rituximab, it will be injected first over about 4 to 5 hours, followed by the Cladribine. So far the other patients have had slight fevers and shortness of breath, but nothing too serious. After that, I hang out and get daily injections of Cladribine for 4 more days. If there are no serious effects after day 3, I may switch to outpatient for the last 2 days.
If selected for Rituximab, I'll head back to NIH once a week for 2 months to get those injections. CBC's will be measured weekly until July. Bone marrow biopsies, and standard image sets will be run once every 6 months for some time thereafter.
Starting midnight on Sunday, there's to be no eating and only moderate drinking of water. I've an appointment at the Phlebotomy lab at 9 am Monday morning for some more blood letting followed by a visit to ... The 13th Floor (pretend that text is undulating like the credits for a scary movie) where they'll sample my blood for hairy buggers. I've got a surprise waiting for them, though. You see I replaced my regular blood with Folger's instant crystals. They won't believe it's an instant!
After the blood letting, nurse R will bring me my "urine bucket". Oh joy! I get to collect pee for 24 hours to make sure my kidneys are functioning properly. Even if I could head back to work for a half day, I don't think the logistics of the "urine bucket" would work out too well. Right now, disturbing images of the homeless guy from "In Living Color" and his "pickle jar" are racing through my brain. Those of you who know what I'm talking about just had a disturbing laugh. Those of you who don't should be thankful. I just hope the bucket has a lid.
At 9:40, I head down to Radiology, chug a quick mix of strawberry flavored Barium (note: based on prior experience, it tastes more like @*!) and then get my CT scan. They'll inject contrast agent into my vein right before I go into the imager -- makes you feel all warm and cozy inside. I'm not a stranger to CT scans. I had my first one back in 1991 shortly after suffering debilitating migraines right after my first wedding. Funny how they started upon getting married and stopped after getting separated. Seriously though, I think it was the damn Liz Claiborne perfume she wore.
Next, I get an EKG. I've always wanted one ever since seeing episodes of Emergency! as a kid. I just thought the circumstances would be a bit more heroic, you know -- like collapsing after saving a bus full of orphans from falling off a cliff while Johnny Gage and Roy DeSoto show up just in the nick of time.
Monday wraps up with a chest X-ray. I expect my skin will soon glow in the dark with all the radiation I've gotten over the past two months. On the bright side, I won't have to turn on the light to fill my urine bucket in the middle of the night...
Tuesday isn't quite as busy. I start off with a ultrasound of my abdomen at 9:00 to check out the old spleen, followed by one last pee in "Ye Olde Urine Bucket" before handing it back to nurse R. I head over to Building 5 at 11 for an echocardiogram, then I'm done for the day.
On Wednesday, I suffer without food until I meet with Dr. K at 2:30 for my physical. If all goes well, I'll get admitted and the PICC line will get installed at 3:30. The meds will be administered shortly thereafter. If I'm selected for Rituximab, it will be injected first over about 4 to 5 hours, followed by the Cladribine. So far the other patients have had slight fevers and shortness of breath, but nothing too serious. After that, I hang out and get daily injections of Cladribine for 4 more days. If there are no serious effects after day 3, I may switch to outpatient for the last 2 days.
If selected for Rituximab, I'll head back to NIH once a week for 2 months to get those injections. CBC's will be measured weekly until July. Bone marrow biopsies, and standard image sets will be run once every 6 months for some time thereafter.
Monday, April 13, 2009
GSE, JNK activation and apoptosis
I saw some articles on the cell death effects of Grape Seed Extract (GSE) on Jurkat cells through increased activation of JNK enzymes in these leukemic T-cells. This peaked my interest, so I did a little more research on JNK activation in HCL and GSE.
Based on research by Kamiguti, Harris, Cawley, et al, (University of Liverpool School of Cancer Studies) it appears that HCL cell survival is in large part "determined by the balance between the potential proapoptotic effects of p38/JNK and the antiapoptotic ones of ERK." In layman's terms, ERK is an enzyme in HCL that tries to keep it alive, and JNK is an enzyme that tries to help it die; the balance between the two enzymes plays a large role in whether the cells live (antiapoptotic) or die (proapoptotic). (Apoptosis = cell death by suicide -- typically through the TP53 tumor suppressor gene, but other genes and proteins can also induce it).
Their research showed that another family of enzymes known as PKC was present in HCL and helped increase ERK and decrease p38/JNK. By using PKC inhibitors in conjunction with 2-CdA chemotherapy, they improved the chemo's effectiveness.
Getting to the point: By activating JNK enzymes in HCL, the ERK to JNK ratio will favor HCL cell death. Prior studies of GSE in Jurkat cells as well as prostate cancer show that GSE is highly effective in activating JNK enzymes and inducing apoptosis in those cell lines. This suggests that a natural remedy like GSE may hold promise for being an effective proapoptotic agent in HCL. I hope some universities will realize the potential of GSE for JNK activation in HCL and investigate it further.
Drawback: GSE is a potent blood thinner; thus, regular use of GSE could cause excessive bleeding in individuals with Thrombocytopenia or anyone taking blood thinners; hence, taking GSE directly without medical supervision could be extremely dangerous and possibly lethal for anyone with clinical HCL.
Additional Note: Aloe-Emodin, found in Rhubarb and Aloe, is also a pronounced JNK activator and apoptosis agent. Rhubarb is also a known blood thinner which could cause spontaneous bleeding in individuals with Thrombocytopenia or clinical HCL.
PET Scans, Sugar and Leukemia
After noting some of the differences between the biochemistry of leukemia versus solid tumors, I had questions regarding whether leukemia is really a sugar feeder like solid tumors are. This article on PET scans confirms that it is. Check out the image on the left of the article. It's a PET scan of a leukemic patient.
PET scans operate by adding a radionuclide to a glucose analogue sugar and then imaging the areas where consumption/decomposition occurs, causing photon emission -- the anaerobic cancers. Since this approach can image leukemic infiltration of bone marrow, it demonstrates that leukemia is also a sugar feeder.
http://www.durangoherald.com/sections/Features/Health/2009/03/09/Does_chemotherapy_work/
Note: studies of HCL indicate that it does not appear prominently in PET scans; hence, less dependent on sugar as its fuel.
PET scans operate by adding a radionuclide to a glucose analogue sugar and then imaging the areas where consumption/decomposition occurs, causing photon emission -- the anaerobic cancers. Since this approach can image leukemic infiltration of bone marrow, it demonstrates that leukemia is also a sugar feeder.
http://www.durangoherald.com/sections/Features/Health/2009/03/09/Does_chemotherapy_work/
Note: studies of HCL indicate that it does not appear prominently in PET scans; hence, less dependent on sugar as its fuel.
Sunday, April 12, 2009
'Shrooms and Stuff
Bummer. I started taking medicinal mushrooms in the hope that it would stimulate certain anti-cancer cytokine production including tumor necrosis factor (TNF) and various interleukins by my immune system to see if that would reduce the HCL tumor burden; however, it looks like HCL may actually proliferate in the presence of TNF based on research by Barak, Nisman, et al (see Tallman and Polliack, 'Hairy Cell Leukemia', pp. 107 - 123). Using mushrooms (or any other method) to secrete more of these cytokines may be a bad thing.
This same research indicates that hairy cells may have a decoy IL-1 (interleukin) receptor which binds IL-1 without inducing any effect, and "soluble IL-2 receptor levels were shown to correlate well with HCL tumor burden and disease activity...while levels clearly decreased during therapy [with Cladribine] and after clinical response."
There are many other interesting facts in this research article. In fact, hairy cells appear to secrete TNF and shed TNF receptors into the bloodstream. TNF has been measured in large quanities in HCL patients.
Conclusion: Unlike other cancers, it may be a bad idea to try to increase your body's TNF and interleukin production if you have HCL. HCL is very unlike other cancers and expresses a biochemistry which is uncommon and may proliferate in the presence of certain cytokines.
Per the April 9 test at my hematologist, my blood counts have not changed significantly, but that report did not include the level of differential detail needed to compare it to the tests run by NIH.
New results from the March 31 test: Dr. K evaluated the binding capacity of certain proteins expressed on the surface of the hairy cells (CD20, CD22 and CD25) to monoclonal antibodies being researched. The mean number of molecules of anti-CD20 bound per hairy cell was greater than 100,000. The mean number of molecules of anti-CD22 and anti-CD25 bound per hairy cell was 58,656 and 14,103 respectively. This bodes well for treatment with Rituximab (the anti-CD20 drug being used in my trial) as well as RL22 and HA22 (other drugs being researched by Scripps and NIH).
My neck and thoracic MRI from April 2nd showed some slight degeneration of the disc between my C5 and C6 vertebrae. This is the most common degeneration for any adult. The bone marrow signal is heterogenous (abnormal intensity) because I have HCL, but the spinal cord signal "shows normal intensity with no evidence of abnormal enhancement." No well defined lesions were identified. Nothing too unusual for someone with HCL.
One more week before the final round of testing and chemo begin.
This same research indicates that hairy cells may have a decoy IL-1 (interleukin) receptor which binds IL-1 without inducing any effect, and "soluble IL-2 receptor levels were shown to correlate well with HCL tumor burden and disease activity...while levels clearly decreased during therapy [with Cladribine] and after clinical response."
There are many other interesting facts in this research article. In fact, hairy cells appear to secrete TNF and shed TNF receptors into the bloodstream. TNF has been measured in large quanities in HCL patients.
Conclusion: Unlike other cancers, it may be a bad idea to try to increase your body's TNF and interleukin production if you have HCL. HCL is very unlike other cancers and expresses a biochemistry which is uncommon and may proliferate in the presence of certain cytokines.
Per the April 9 test at my hematologist, my blood counts have not changed significantly, but that report did not include the level of differential detail needed to compare it to the tests run by NIH.
New results from the March 31 test: Dr. K evaluated the binding capacity of certain proteins expressed on the surface of the hairy cells (CD20, CD22 and CD25) to monoclonal antibodies being researched. The mean number of molecules of anti-CD20 bound per hairy cell was greater than 100,000. The mean number of molecules of anti-CD22 and anti-CD25 bound per hairy cell was 58,656 and 14,103 respectively. This bodes well for treatment with Rituximab (the anti-CD20 drug being used in my trial) as well as RL22 and HA22 (other drugs being researched by Scripps and NIH).
My neck and thoracic MRI from April 2nd showed some slight degeneration of the disc between my C5 and C6 vertebrae. This is the most common degeneration for any adult. The bone marrow signal is heterogenous (abnormal intensity) because I have HCL, but the spinal cord signal "shows normal intensity with no evidence of abnormal enhancement." No well defined lesions were identified. Nothing too unusual for someone with HCL.
One more week before the final round of testing and chemo begin.
Sunday, April 5, 2009
Nutrition
At any given time, everyone has hundreds if not thousands of cancer cells in their body -- sun damaged skin cells, a kidney cell mutated by aspartame as it decomposes into methanol and formaldehyde in your digestive system. The list is endless. Normally, the body's immune system recognizes and kills the mutant cells before they can establish themselves. But cancer thrives on sugar, and a diet low in essential nutrients and high in glucose and added sugar gives the normally hapless enemy every advantage to grow its army and attack the body while leaving your immune system too weak to properly defend itself. That's basically what happened to me as I worked late hours at the office subsisting on M&M's and Mountain Dew. Coming home too tired to make a real meal, I'd turn to a frozen pizza loaded with nitrates, followed by scoops of sugar and fat-laden vanilla ice cream. This high-glucose fuel allowed the cancer to move from its impersceptible chronic phase to the more symptomatic phase.
I'm not saying don't enjoy the good things in life, but I am saying don't abuse them or your body for the sake of convenience. My perception of what the good things really are certainly has evolved in a short time. We all know that good nutrition is fundamental to preventing cancer, but often assume that as long as the ingredients have some form of natural origin we'll be okay. Unfortunately, avoiding Twinkies, soda pop and food that doesn't decompose or grow mold is not good enough. Even when relying on all-natural ingredients, the nutrient/sugar ratio of our diets plays a fundamental role in determining whether we'll get cancer and whether we'll beat it if we get it. These concepts are best described in Patrick Quillin's "Beating Cancer with Nutrition".
Regarding sugar: I'm trying to minimize it, not replace it. I was surprised to see that since Aspartame's (aka Equal/Nutrasweet) introduction in 1980, there has been a 280% increase in the rate of occurence of brain tumors. Given the plethora of cultural changes that have impacted our lifestyles and environment over the past 3 decades, Aspartame can't be given the full blame for the increase, but it is interesting to note that during the FDA approval process, several scientists protested approval because of the high rate of occurence of brain tumors in lab rats consuming Aspartame (wiki Aspartame). Based on current research, Splenda appears to be the safest alternative artificial sweetener and Stevia appears to be a safe natural alternative. Still, I prefer to just reduce sugar and avoid alternatives altogether.
Now that I have cancer, a fundamental nutrional lifestyle change has occurred. No more ice cream (at least until I go into remission -- and then it will be a rare occasion), no more soda, no more candy, and I minimize processed foods and foods with a high glycemic index (like white potatoes and processed rice and potato flour). Sometimes I eat salad for breakfast, but usually it's yogurt with a side medley of peppers, onions, garlic and oriental mushrooms sauteed in olive oil. Top it off with a fried eggwhite, vitamin and herbal supplements (A, C, D, kelp, magnesium, chromium, cinnamon, ginger) and a cup of tea. I drink Rooibos tea two to three times daily, keep a supply of fresh vegetables ready for snacking in the refrigerator, and have a bowl of sunflower seeds sitting on the counter at all times. Vitamin C is similar to sugar in its molecular structure and in high quantities is able to fool cancer cells into trying to consume it as fuel -- resulting in apoptosis of the tumor cells.
Among the foods I've added to my arsenal are quinoa, the most nutritious of the whole grains, and cancer fighting oriental mushrooms like agaricus blazei, reishi, shiitake, and maitake. Update (4/12/09 -- *** WARNING *** using mushrooms to increase cytokine production such as TNF may enhance the proliferation of HCL. See post from 4/12/09 and Tallman, pp. 107-126). All of these have undergone testing that shows they inhibit tumor metastasis and the progression of various leukemias. If they're good enough for the Memorial Sloan-Kettering Cancer Center, they're good enough for me.
At this point, 25% of you think I'm nuts, 50% of you confirmed your prior suspicions, and 20% are thinking even if you wanted to do that, there's no way you could. The other 5% had already confirmed I was nuts long ago. When you have cancer, there's not much you can control, and many of my fellow HCL'ers choose not to control anything -- just take the chemo, go into remission and wait. I choose to control my diet and treatment, and so far it's proved beneficial. My counts have stabilized and in many cases improved. My dizzy spells are less frequent and my endurance has improved. I see my hematologist this Thursday for another CBC. Let's hope the results show continued improvement so that when I go in for chemo, my immune system's arsenal will be fully prepared to defend the good cells while letting the chemo do its job against the bad ones. I believe that these dietary changes are a lifetime commitment -- required to minimize the proliferation of the disease after chemo, maximize the period between recurrance and increase the possibility of organic eradication.
One last note: hairy cell leukemia also consumes cholesterol. Several studies have shown that hairy cells contain more cholesterol than their normal B-cell counterparts. Likewise, patients with hairy cell leukemia typically have low levels of both LDL (bad) and HDL (good) cholesterol. My HDL had been lower than normal for several years prior to my diagnosis. Even with lack of exercise, it was considered low. I took fish oil pills for two years with little improvement. My LDL level dropped suddenly as the disease progressed and symptoms increased. I'm going to ask my hematologist to run a cholesterol test this Thursday to see if the level has continued to drop. Typically, an abnormally low level of bad cholesterol is not dangerous although it is a marker that a causitive disease, such as HCL, is present. It's also associated with a higher than normal incidence of stomach cancer.
Note: Going on a low cholesterol diet during treatment to try to starve HCL is probably a bad idea since many studies indicate that cholesterol is a necessary agent in B-cells to induce apoptosis (cell death via suicide).
I'm not saying don't enjoy the good things in life, but I am saying don't abuse them or your body for the sake of convenience. My perception of what the good things really are certainly has evolved in a short time. We all know that good nutrition is fundamental to preventing cancer, but often assume that as long as the ingredients have some form of natural origin we'll be okay. Unfortunately, avoiding Twinkies, soda pop and food that doesn't decompose or grow mold is not good enough. Even when relying on all-natural ingredients, the nutrient/sugar ratio of our diets plays a fundamental role in determining whether we'll get cancer and whether we'll beat it if we get it. These concepts are best described in Patrick Quillin's "Beating Cancer with Nutrition".
Regarding sugar: I'm trying to minimize it, not replace it. I was surprised to see that since Aspartame's (aka Equal/Nutrasweet) introduction in 1980, there has been a 280% increase in the rate of occurence of brain tumors. Given the plethora of cultural changes that have impacted our lifestyles and environment over the past 3 decades, Aspartame can't be given the full blame for the increase, but it is interesting to note that during the FDA approval process, several scientists protested approval because of the high rate of occurence of brain tumors in lab rats consuming Aspartame (wiki Aspartame). Based on current research, Splenda appears to be the safest alternative artificial sweetener and Stevia appears to be a safe natural alternative. Still, I prefer to just reduce sugar and avoid alternatives altogether.
Now that I have cancer, a fundamental nutrional lifestyle change has occurred. No more ice cream (at least until I go into remission -- and then it will be a rare occasion), no more soda, no more candy, and I minimize processed foods and foods with a high glycemic index (like white potatoes and processed rice and potato flour). Sometimes I eat salad for breakfast, but usually it's yogurt with a side medley of peppers, onions, garlic and oriental mushrooms sauteed in olive oil. Top it off with a fried eggwhite, vitamin and herbal supplements (A, C, D, kelp, magnesium, chromium, cinnamon, ginger) and a cup of tea. I drink Rooibos tea two to three times daily, keep a supply of fresh vegetables ready for snacking in the refrigerator, and have a bowl of sunflower seeds sitting on the counter at all times. Vitamin C is similar to sugar in its molecular structure and in high quantities is able to fool cancer cells into trying to consume it as fuel -- resulting in apoptosis of the tumor cells.
Among the foods I've added to my arsenal are quinoa, the most nutritious of the whole grains, and cancer fighting oriental mushrooms like agaricus blazei, reishi, shiitake, and maitake. Update (4/12/09 -- *** WARNING *** using mushrooms to increase cytokine production such as TNF may enhance the proliferation of HCL. See post from 4/12/09 and Tallman, pp. 107-126). All of these have undergone testing that shows they inhibit tumor metastasis and the progression of various leukemias. If they're good enough for the Memorial Sloan-Kettering Cancer Center, they're good enough for me.
At this point, 25% of you think I'm nuts, 50% of you confirmed your prior suspicions, and 20% are thinking even if you wanted to do that, there's no way you could. The other 5% had already confirmed I was nuts long ago. When you have cancer, there's not much you can control, and many of my fellow HCL'ers choose not to control anything -- just take the chemo, go into remission and wait. I choose to control my diet and treatment, and so far it's proved beneficial. My counts have stabilized and in many cases improved. My dizzy spells are less frequent and my endurance has improved. I see my hematologist this Thursday for another CBC. Let's hope the results show continued improvement so that when I go in for chemo, my immune system's arsenal will be fully prepared to defend the good cells while letting the chemo do its job against the bad ones. I believe that these dietary changes are a lifetime commitment -- required to minimize the proliferation of the disease after chemo, maximize the period between recurrance and increase the possibility of organic eradication.
One last note: hairy cell leukemia also consumes cholesterol. Several studies have shown that hairy cells contain more cholesterol than their normal B-cell counterparts. Likewise, patients with hairy cell leukemia typically have low levels of both LDL (bad) and HDL (good) cholesterol. My HDL had been lower than normal for several years prior to my diagnosis. Even with lack of exercise, it was considered low. I took fish oil pills for two years with little improvement. My LDL level dropped suddenly as the disease progressed and symptoms increased. I'm going to ask my hematologist to run a cholesterol test this Thursday to see if the level has continued to drop. Typically, an abnormally low level of bad cholesterol is not dangerous although it is a marker that a causitive disease, such as HCL, is present. It's also associated with a higher than normal incidence of stomach cancer.
Note: Going on a low cholesterol diet during treatment to try to starve HCL is probably a bad idea since many studies indicate that cholesterol is a necessary agent in B-cells to induce apoptosis (cell death via suicide).
Wednesday, April 1, 2009
NIH and Chemotherapy
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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