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Atypical Case of a Rare Disease | hcljournal.blogspot.com Reviews
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battling hairy cell leukemia
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Atypical Case of a Rare Disease: January 2011
http://hcljournal.blogspot.com/2011_01_01_archive.html
Atypical Case of a Rare Disease. Battling hairy cell leukemia. Friday, January 7, 2011. WHO normal 14.0-17.3). Normal 1.4-7.5). Normal 0.8-5.0). White blood cell count. Red blood cell count. Normal 4.5-5.9). Almost a month since my last post (blog followers, sorry about that). I am undead. Not a zombie — just not dead. All kinds of things have happened, of course. Went back to the NIH for a bone marrow biopsy and a cardiac MRI. Here's the BMB report:. No more blood tests for a month! Best thing is being ...
Atypical Case of a Rare Disease: February 2008
http://hcljournal.blogspot.com/2008_02_01_archive.html
Atypical Case of a Rare Disease. Battling hairy cell leukemia. Friday, February 29, 2008. The only thing for it is to think. This week I re-read everything I could find about Rituxan: journal articles, drug information sheets, blog entries, cancer forums. I also asked other HCL patients about their experience. Which seems to be working a bit better. The Rituxan gives her a mild, temporary case of anemia, knocking her hemoglobin down about 1.5 points and reducing her white blood counts, but not dr...Resul...
Atypical Case of a Rare Disease: December 2010
http://hcljournal.blogspot.com/2010_12_01_archive.html
Atypical Case of a Rare Disease. Battling hairy cell leukemia. Thursday, December 9, 2010. Neupogen: 2.1 grams. Levaquin: 8.75 grams. Zysor: 3x/day by IV, 8 days. Radiation (3 chest x-rays, 2 CT scans): 1000 millirems (average yearly background exposure is 300 millirems). Sestamibi (radioactive dye): 5 ml. Iodine (radioactive contrast agent): 500 ml solution. Nuclear magnetic resonance (MRI): 3.5 hours. Ultrasound: 1.5 hours. Blood: 750 ml ( 150 tubes @ 5-10 ml per tube). Blood draw appointments: 18.
Atypical Case of a Rare Disease: January 2008
http://hcljournal.blogspot.com/2008_01_01_archive.html
Atypical Case of a Rare Disease. Battling hairy cell leukemia. Tuesday, January 29, 2008. 123 (normal 14.0-17.3). 31 (normal 1.4-7.5) — NORMAL. White blood cell count. 41 (normal 4-10) — NORMAL. 255 (normal 150-450) — NORMAL. New blood work, first in a month (see updated charts. Is happening — only hemoglobin remains subnormal. Be around the middle of March. My doctor hypothesized they might be rebound headaches. Meanwhile I’ ve. Also learned some jaw stretches and massage trigger points for my nighttime...
Atypical Case of a Rare Disease: February 2011
http://hcljournal.blogspot.com/2011_02_01_archive.html
Atypical Case of a Rare Disease. Battling hairy cell leukemia. Wednesday, February 16, 2011. WHO normal 14.0-17.3). Normal 1.4-7.5). Normal 0.8-5.0). White blood cell count. Red blood cell count. Normal 4.5-5.9). But today's real news — came in last night from my NIH research blood draw last week — is the flow cytometry:. This doesn't mean the HCL is gone. It could still be (and almost certainly is) hiding in the bone marrow, since the flow cytometry only measures the peripheral blood But it does mea...
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Hairy Cell: July 2014
http://hairycell.blogspot.com/2014_07_01_archive.html
A journal of my life with Hairy Cell Leukaemia. Thursday, 31 July 2014. I thought that as time went on they would get easier and I’d be more relaxed, because each time I go I get good news, but actually the opposite seems to be the case. The more time that has elapsed between my treatment and the checkup the more likely I feel that those hairy cells will finally, and inevitably, be back. This time round I am focussing not on a part of my body but on my historical blood test results. When I was diagno...
Hairy Cell: April 2011
http://hairycell.blogspot.com/2011_04_01_archive.html
A journal of my life with Hairy Cell Leukaemia. Thursday, 14 April 2011. I’ve been a gym member before. I joined my first in my late teens. It was a small local place populated with guys who seemed to spend every waking hour drinking tuna milkshakes and exercising their upper bodies so much that they turned into massive piles of muscle set atop tiny spindly legs. This is all part of what I call my “one more day” plan. 8220;One more day”. Subscribe to: Posts (Atom). This is my blog.
Hairy Cell: Dryathlon
http://hairycell.blogspot.com/2014/01/dryathlon.html
A journal of my life with Hairy Cell Leukaemia. Friday, 3 January 2014. To mark the "four years since treatment" milestone I've decided to take on Cancer Research's Dryathlon challenge. This isn't going to be easy as I've got a number of overseas trips AND a sales conference on the cards for this month. All of which usually involve a tipple or two. Http:/ www.justgiving.com/RichGoesDry. And remember just how expensive drinks are here in London. £20 a pint! 12 February 2014 at 09:27. This is my blog.
Jon's Hairy Cell Leukemia (HCL) Blog: June 2013
http://jonshclblog.blogspot.com/2013_06_01_archive.html
Jon's Hairy Cell Leukemia (HCL) Blog. A journal of my diagnosis of and treatment for Hairy Cell Leukemia at the National Cancer Institute. Wednesday, June 5, 2013. Hairy Cell Leukemia: Making an Impact. About 2.5 years ago, I blogged regarding a new drug I read about and brought to the attention of the Hairy Cell Consortium. It's a Bruton's Tyrosine Kinase (BTK). Inhibitor known as PCI-32765. And was inspired by a rare disease known as XLA. Here's a link to the post:. And The Karmanos Cancer Institute.
Jon's Hairy Cell Leukemia (HCL) Blog: January 2013
http://jonshclblog.blogspot.com/2013_01_01_archive.html
Jon's Hairy Cell Leukemia (HCL) Blog. A journal of my diagnosis of and treatment for Hairy Cell Leukemia at the National Cancer Institute. Sunday, January 20, 2013. Otherwise, I've been working hard and just enjoying life. Great progress has been made with respect to early treatments using Vemurafenib. Just one more thing: Here is a link to 15-year-old Jack Andraka's TED talk. Happy New Year to All! Here are some articles related to the BRAF V600E mutation and HCL Classic:. Posted by Jonathan Howard.
Jon's Hairy Cell Leukemia (HCL) Blog: December 2010
http://jonshclblog.blogspot.com/2010_12_01_archive.html
Jon's Hairy Cell Leukemia (HCL) Blog. A journal of my diagnosis of and treatment for Hairy Cell Leukemia at the National Cancer Institute. Thursday, December 23, 2010. I had a clinic appointment yesterday and got my FACS and BMBx results:. Peripheral blood flow is unchanged over the past 3 months and holding at .04% hairies. Aspirate flow is at 4% - up from 2% last May. BMBx immunostaining shows 5% infiltration. That means I'm no longer in remission. In any case, I'm hoping this round will provide more o...
Jon's Hairy Cell Leukemia (HCL) Blog: Hairy Cell Leukemia: I Want a New Drug ...
http://jonshclblog.blogspot.com/2010/11/i-want-new-drug.html
Jon's Hairy Cell Leukemia (HCL) Blog. A journal of my diagnosis of and treatment for Hairy Cell Leukemia at the National Cancer Institute. Saturday, November 20, 2010. Hairy Cell Leukemia: I Want a New Drug . I want a new drug. Today, I found another one - a Btk ( Bruton's tyrosine kinase. In which B-cells are absent from the peripheral blood because Btk is not produced due to a Btk gene defect. What's great about this drug is that it's a pill, taken orally, that inhibits Btk production and thus B-cell p...
Jon's Hairy Cell Leukemia (HCL) Blog: July 2013
http://jonshclblog.blogspot.com/2013_07_01_archive.html
Jon's Hairy Cell Leukemia (HCL) Blog. A journal of my diagnosis of and treatment for Hairy Cell Leukemia at the National Cancer Institute. Wednesday, July 3, 2013. Hairy Cell Leukemia: A Pleasant Surprise. It's been a week since my restaging appointment at NIH. Those of you in the trial know the routine: CBC bloodraw in Phlebotomy, MRI and ultrasound in Imaging, then bone marrow biopsy and aspiration (my tenth) in Out-patient Procedures. Get an X-ray and EKG in between those appointments. V600E, caused b...
Jon's Hairy Cell Leukemia (HCL) Blog: Hairy Cell Leukemia: Mission Accomplished!
http://jonshclblog.blogspot.com/2011/07/mission-accomplished.html
Jon's Hairy Cell Leukemia (HCL) Blog. A journal of my diagnosis of and treatment for Hairy Cell Leukemia at the National Cancer Institute. Thursday, July 7, 2011. Hairy Cell Leukemia: Mission Accomplished! I was going to call this post "A Little Bit of Everything", but fortunately my plans have changed! Or should I say "Dr. Kreitman and The NIH Trial to Treat First Time HCL Patients. I couldn't have done it without the NIH trial. If you recall, it's taken me a little over two years to get here. I'm a hai...
Jon's Hairy Cell Leukemia (HCL) Blog: July 2011
http://jonshclblog.blogspot.com/2011_07_01_archive.html
Jon's Hairy Cell Leukemia (HCL) Blog. A journal of my diagnosis of and treatment for Hairy Cell Leukemia at the National Cancer Institute. Thursday, July 7, 2011. Hairy Cell Leukemia: Mission Accomplished! I was going to call this post "A Little Bit of Everything", but fortunately my plans have changed! Or should I say "Dr. Kreitman and The NIH Trial to Treat First Time HCL Patients. I couldn't have done it without the NIH trial. If you recall, it's taken me a little over two years to get here. I'm a hai...
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HCL Jewelry
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Atypical Case of a Rare Disease
Atypical Case of a Rare Disease. Battling hairy cell leukemia. Monday, May 16, 2011. WHO normal 14.0-17.3). Normal 1.4-7.5). Normal 0.8-5.0). White blood cell count. Red blood cell count. Normal 4.5-5.9). Went back to the NIH last week for another round of tests. Since flow cytometry on April 19 was slightly positive (0.15% HCL in the peripheral blood), everybody was expecting I'd be positive again on May 11 and I'd be starting 8 weeks of rituxan on May 18. There are some B-cells which could be minimal r...
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