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Personal Update and Dr. Byrd on What We Don't Know
Hi, I have been negligent in posting but I have an excuse or actually several. Been working hard to get back to my baseline with my knee arthritis and pain through swimming and physical therapy. Still anemic and tired, but getting better. The trip to Stockholm for EHA to present our research didn’t help
Hi, I have been negligent in posting but I have an excuse or actually several. Been working hard to get back to my baseline with my knee arthritis and pain through swimming and physical therapy. Still anemic and tired, but getting better. The trip to Stockholm for EHA to present our research didn’t help
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
The bugs we carry and how our immune system fights them
That's why we don't tend to respond well to vaccinations and why some of us need IgG infusions to bolster our
immunoglobulin
G levels - Neil.)
That's why we don't tend to respond well to vaccinations and why some of us need IgG infusions to bolster our
immunoglobulin
G levels - Neil.)
AussieNeil
Partner
in
CLL Support
6 years ago
Prostate
I have a question about Prostate Cancer and CLL/SLL. My husband had his annual Urology appointment Monday and his PSA was 15. Doctor ordered a 4K Blood test to score the prediction of his risk of aggressive Prostate Cancer and his score was 51. He is to have a biopsy on July 9. He has been on
I have a question about Prostate Cancer and CLL/SLL. My husband had his annual Urology appointment Monday and his PSA was 15. Doctor ordered a 4K Blood test to score the prediction of his risk of aggressive Prostate Cancer and his score was 51. He is to have a biopsy on July 9. He has been on
Sis1Ap3
in
CLL Support
6 years ago
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Bone Marrow Biopsy showing Manoclonal B Lymphocytosis
Hello My name is Gloria, My husband Angel has been fighting small B-Cell Lymphocytic Leukemia/lymphoma for more than 8 years and none of the chemotherapy has helped him. The only treatment that helped him was Imbrivica (Ibrutinib)for a year his blood levels improved almost to normal levels but, the
Hello My name is Gloria, My husband Angel has been fighting small B-Cell Lymphocytic Leukemia/lymphoma for more than 8 years and none of the chemotherapy has helped him. The only treatment that helped him was Imbrivica (Ibrutinib)for a year his blood levels improved almost to normal levels but, the
gsanchez
in
CLL Support
6 years ago
Painful Port?
So, when I began IVIG, I insisted on getting a port. My nutrition clinic wanted to put in a PICC, but my deep veins suck, too, and I didn’t love the idea of a PICC when I love baths and have dogs to care for. Anyhow, the thing was placed in the middle of April, and I still have itching. Now I have
So, when I began IVIG, I insisted on getting a port. My nutrition clinic wanted to put in a PICC, but my deep veins suck, too, and I didn’t love the idea of a PICC when I love baths and have dogs to care for. Anyhow, the thing was placed in the middle of April, and I still have itching. Now I have
NerdyChristina
in
Behçet's UK
6 years ago
I’m worried about my relapse for the second time
Hi all, I was diagnosed with ITP in 2007, as I was at the worst stage than with platelet count of 5, I was given both blood & platelet transfusion, IVIG for 10 days followed by course of prednisolone for a year. I then had a relapse in 2012, sudden heavy bleeding during my period and my platelet count
Hi all, I was diagnosed with ITP in 2007, as I was at the worst stage than with platelet count of 5, I was given both blood & platelet transfusion, IVIG for 10 days followed by course of prednisolone for a year. I then had a relapse in 2012, sudden heavy bleeding during my period and my platelet count
Shielz
in
ITP Support Association
6 years ago
Imbruvica and Sinus Issues
My husband has been on Imbruvica for 54 days and developed a Cold (Sinus Infection) two weeks ago and just can’t seem to shake it. Oncologist ordered Zpack and DayQuil/NyQuil it has helped some but certainly not well. Will see Oncologist on June 22. He has not had IVIG since April 3rd. Has anyone had
My husband has been on Imbruvica for 54 days and developed a Cold (Sinus Infection) two weeks ago and just can’t seem to shake it. Oncologist ordered Zpack and DayQuil/NyQuil it has helped some but certainly not well. Will see Oncologist on June 22. He has not had IVIG since April 3rd. Has anyone had
Sis1Ap3
in
CLL Support
6 years ago
Need some feedback...
After my last visit with my onco it was decided that I still do not need IVIG and to take an antibiotic and viral medicine when needed - Visited a new dentist yesterday as old one retired and was put thru the paces with a myriad of X-rays and poking around my mouth. My rt eye and temple hurt and finally
After my last visit with my onco it was decided that I still do not need IVIG and to take an antibiotic and viral medicine when needed - Visited a new dentist yesterday as old one retired and was put thru the paces with a myriad of X-rays and poking around my mouth. My rt eye and temple hurt and finally
Stretch1
in
CLL Support
6 years ago
Hashimoto's. Am I on my way to Graves, too? TSI results.
I'm supposed to test TBII (thyrotropin-binding inhibitory
immunoglobulin
), too, but the code is missing from the test request. I hope I can get that added tomorrow. I value all of your opinions and advice, so thank you to anyone who reads this and responds. :-)
I'm supposed to test TBII (thyrotropin-binding inhibitory
immunoglobulin
), too, but the code is missing from the test request. I hope I can get that added tomorrow. I value all of your opinions and advice, so thank you to anyone who reads this and responds. :-)
ShootingStars
in
Thyroid UK
6 years ago
Path To Diagnosis: Can anybody offer some advice?
The Complement and
Immunoglobulin
levels were normal. The Direct Coombes Test was negative. This I understand. But then, my blood was positive for Ro Antibodies. The Specialist went on to say how interesting the results of the ANA IIF would be. The ANA came back Nucleolar.
The Complement and
Immunoglobulin
levels were normal. The Direct Coombes Test was negative. This I understand. But then, my blood was positive for Ro Antibodies. The Specialist went on to say how interesting the results of the ANA IIF would be. The ANA came back Nucleolar.
Rachblack1972
in
LUPUS UK
6 years ago
Endless battle to find meds I can cope with
Hi my lupy friends, I have SLE ITP sjorgens Raynards fibromyalgia and neuropathy, greedy I know 😊 since the beginning of the year I have been fighting a massive flare and being ignored really, then I decided to help my rheumy with some research to make gps more aware that when we say we have joint pain
Hi my lupy friends, I have SLE ITP sjorgens Raynards fibromyalgia and neuropathy, greedy I know 😊 since the beginning of the year I have been fighting a massive flare and being ignored really, then I decided to help my rheumy with some research to make gps more aware that when we say we have joint pain
Manclady61
in
LUPUS UK
6 years ago
Out of the woods with ITP (I think!)
I have been diagnosed with ITP nine years ago back in dec. 2009, I was on my way to CA and I was told my blood count went to 2,000 from my primary care so I had to see a specialist, I went in and they gave me prednisone, for two weeks, they advised me not to go but I had already got the ticket so I went
I have been diagnosed with ITP nine years ago back in dec. 2009, I was on my way to CA and I was told my blood count went to 2,000 from my primary care so I had to see a specialist, I went in and they gave me prednisone, for two weeks, they advised me not to go but I had already got the ticket so I went
Itpnotforme123
in
ITP Support Association
6 years ago
Does my daughter have ana negative neurophyschiatric SLE? Cyclophosamide side effects?
She's had 3 relapses and intially treated with antibiotics, steroids,
immunoglobulin
, plasmatheresis, followed by rituximab then more
immunoglobulin
and rituximab in August 2017.
She's had 3 relapses and intially treated with antibiotics, steroids,
immunoglobulin
, plasmatheresis, followed by rituximab then more
immunoglobulin
and rituximab in August 2017.
Vickysmum
in
LUPUS UK
6 years ago
Was anyone else frightened to start Ivig treatments ?
I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving me autoimmune neutropenia. In order to supposedly fix that I need these Ivig drips two days in a row for 5 hours every 3 weeks..... I worry
I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving me autoimmune neutropenia. In order to supposedly fix that I need these Ivig drips two days in a row for 5 hours every 3 weeks..... I worry
Luckyliss
in
CLL Support
6 years ago
Unsolvable personality changes due to broken valve
Anyone experience lethargy, gagging, personality changes, confusion after a shunt revision or valve change? IVIG and steroids make my daughter normal again but they won’t replace her shunt and I know this is cause. Something about it is not right and it’s been a year since surgery. She fluctuates. One
Anyone experience lethargy, gagging, personality changes, confusion after a shunt revision or valve change? IVIG and steroids make my daughter normal again but they won’t replace her shunt and I know this is cause. Something about it is not right and it’s been a year since surgery. She fluctuates. One
Jillbrown123
in
Headway
6 years ago
Allergies
Dear all, I was diagnosed with CLL in January 2018. It was quite shocking as no one in my immediate family is known to have cancer(s). Autoimmune issues are prevalent, but not cancer. In any case, I am in W&W with CLL. I recently had my second round of tests since diagnosis and my numbers all numbers
Dear all, I was diagnosed with CLL in January 2018. It was quite shocking as no one in my immediate family is known to have cancer(s). Autoimmune issues are prevalent, but not cancer. In any case, I am in W&W with CLL. I recently had my second round of tests since diagnosis and my numbers all numbers
MP2018
in
CLL Support
6 years ago
Frustration
Dx 12 years ago with ITP. Had IVIG, steroids for 7 years with fluctuating numbers (from 7 to 120). Was on Promacta 75 mg for over a year with great results for about 4 months, then down in the tank again. Having my fourth Rituxan tomorrow; platelets at 20, down from 80. Still on steroids, also. Can
Dx 12 years ago with ITP. Had IVIG, steroids for 7 years with fluctuating numbers (from 7 to 120). Was on Promacta 75 mg for over a year with great results for about 4 months, then down in the tank again. Having my fourth Rituxan tomorrow; platelets at 20, down from 80. Still on steroids, also. Can
Shooshpsu
in
ITP Support Association
6 years ago
Angry at Medical System and Rheumatologist
My lymphocyte count is 692 when 852 is low normal, 0 eosinophils, and
immunoglobulin
G subclasses 4 is 1.0 when 4 is the lowest of normal.So she has given me a referral letter to a hematologist which I understand is probably correct. I imagine she is thinking of a blood disease or blood cancer.
My lymphocyte count is 692 when 852 is low normal, 0 eosinophils, and
immunoglobulin
G subclasses 4 is 1.0 when 4 is the lowest of normal.So she has given me a referral letter to a hematologist which I understand is probably correct. I imagine she is thinking of a blood disease or blood cancer.
Alliand
in
Vasculitis UK
6 years ago
HAPPY (?) WORLD LUPUS DAY!! 🦋🦄♥️🤗
When I told Mum it was World Lupus Day today, she asked me what I was doing for it. I gave it a think, and responded, ‘Enjoying my life, enjoying being me today.’ Even though I spent the day at the hospital receiving my three weekly infusion of IVIg, I found my way to the hospital garden afterwards,
When I told Mum it was World Lupus Day today, she asked me what I was doing for it. I gave it a think, and responded, ‘Enjoying my life, enjoying being me today.’ Even though I spent the day at the hospital receiving my three weekly infusion of IVIg, I found my way to the hospital garden afterwards,
lupusinflight
in
LUPUS UK
6 years ago
Blood Tests
TSH 0.05 mu/L Free T4 17pmol/L Serum free T3 4.2 pmol/L Folate 2.8 ug/L Vit B12 347ng/L LFT - total protein 62g/L
Immunoglobulin
G 6.2 g/L Immuno.. A 0.49 g/L Immuno.. M 1.47 g/L Immunofixation - normal, no paraprotein detected.
TSH 0.05 mu/L Free T4 17pmol/L Serum free T3 4.2 pmol/L Folate 2.8 ug/L Vit B12 347ng/L LFT - total protein 62g/L
Immunoglobulin
G 6.2 g/L Immuno.. A 0.49 g/L Immuno.. M 1.47 g/L Immunofixation - normal, no paraprotein detected.
Capri71
in
Thyroid UK
7 years ago
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