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Why did I get CLL? Clearing up confusion between correlation and causation
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
AussieNeil
Partner
in
CLL Support
5 years ago
My exposure to Ethylene Oxide.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
Bogi1
in
CLL Support
5 years ago
DIL vs SLE - Anti Histone Antibody
Hi everyone, Been awhile since I posted so blessings to you all! I'm posting this in the hopes someone has some knowledge of this topic or knows someone who could answer some questions in more depth than I can find online. As some of you know, I have a bit of a weird storyline that led to my diagnosis
Hi everyone, Been awhile since I posted so blessings to you all! I'm posting this in the hopes someone has some knowledge of this topic or knows someone who could answer some questions in more depth than I can find online. As some of you know, I have a bit of a weird storyline that led to my diagnosis
katidid
in
LUPUS UK
5 years ago
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Dr Mary Ann Anderson on CLL, Venetoclax and future trends in CLL management
Venetoclax is the culmination of a research discovery made in Australia's Walter & Eliza Hall Institute in 1989. [i]Dr Mary Ann Anderson is one of only a few researchers who has seen their work in the lab translate to a frontline therapy for blood cancer. [/i] [i]“Venetoclax targets a protein which
Venetoclax is the culmination of a research discovery made in Australia's Walter & Eliza Hall Institute in 1989. [i]Dr Mary Ann Anderson is one of only a few researchers who has seen their work in the lab translate to a frontline therapy for blood cancer. [/i] [i]“Venetoclax targets a protein which
AussieNeil
Partner
in
CLL Support
5 years ago
Newly diagnosed too, stage 0
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
patilin
in
CLL Support
5 years ago
Newest Test Lab result shows increase of eGFR
Hi everyone, I have done the lab after 3 months of first diagnosed as CKD stage 2 and just received both good news and bad news on it. Good news: eGFR increased from 82 to 97.5 and Albuminuria is no more occurring. Bad news: My HbA1c is 6.4%, which is showing that I am severely at the threshold between
Hi everyone, I have done the lab after 3 months of first diagnosed as CKD stage 2 and just received both good news and bad news on it. Good news: eGFR increased from 82 to 97.5 and Albuminuria is no more occurring. Bad news: My HbA1c is 6.4%, which is showing that I am severely at the threshold between
spiritvan
in
Early CKD Support
5 years ago
Hashimoto’s now Ana positive
Hello I have had Hashimoto’s since I was 16, and never had a positive Ana, I’m now 39 with positive ana of 1:40 and homogeneous pattern has anyone seen this happen with thyroid disease only?
Hello I have had Hashimoto’s since I was 16, and never had a positive Ana, I’m now 39 with positive ana of 1:40 and homogeneous pattern has anyone seen this happen with thyroid disease only?
Litha
in
Thyroid UK
5 years ago
Post transplant tacrolimus doses
Just curious - husband had liver transplant 2014 and came home on 8mg which was reduced to 5mg and has since been taking the same amount of Advagraf - so 5 years later he is still on 5mg 🤔🤔🤔 his last bloods said it was below target range (4-10 I think) 🤷♀️ - has anyone else experienced this ????
Just curious - husband had liver transplant 2014 and came home on 8mg which was reduced to 5mg and has since been taking the same amount of Advagraf - so 5 years later he is still on 5mg 🤔🤔🤔 his last bloods said it was below target range (4-10 I think) 🤷♀️ - has anyone else experienced this ????
cherrygirl13
in
British Liver Trust
5 years ago
Jack Frost.
I remember years ago When Jack Frost was my friend Thinking back to days gone by Why did that friendship end? He always made me catch my breath When he suddenly appeared But soon I would be making steam With nothing to be feared Cosy nights by the fireside With a cup of tea Whilst Jack played around
I remember years ago When Jack Frost was my friend Thinking back to days gone by Why did that friendship end? He always made me catch my breath When he suddenly appeared But soon I would be making steam With nothing to be feared Cosy nights by the fireside With a cup of tea Whilst Jack played around
Hidden
in
Lung Conditions Community Forum
5 years ago
Buprenorphine update 😴😴🤸🏼♀️💃🧘🏻♂️🙏😄
Absolutely the best RSL drug . My husband is shocked he told the good doctor he has never ever known me be still in bed . He said even on oxycodene and stillnox I was fidgety . So what difference do I notice I feel NORMAL I actually don’t feel like I take medication I can take wafer medication
Absolutely the best RSL drug . My husband is shocked he told the good doctor he has never ever known me be still in bed . He said even on oxycodene and stillnox I was fidgety . So what difference do I notice I feel NORMAL I actually don’t feel like I take medication I can take wafer medication
Shumbah
in
Restless Legs Syndrome
5 years ago
Richter Transformation possible?
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
writepa
in
CLL Support
5 years ago
Dr. Siddiqi on Rationale for the TRANSCEND CAR-T CLL 004 Trial in CLL/SLL
[i]Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephenson Lymphoma Center, associate clinical professor, Department of Hematology & Hematopoietic Cell Transplantation, and a hematologist/oncologist at City of Hope, discusses the rationale for the phase I/II TRANSCEND CLL 004
[i]Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephenson Lymphoma Center, associate clinical professor, Department of Hematology & Hematopoietic Cell Transplantation, and a hematologist/oncologist at City of Hope, discusses the rationale for the phase I/II TRANSCEND CLL 004
AussieNeil
Partner
in
CLL Support
5 years ago
Need expert fertility information & face-face support from others trying to conceive?
Join the fertility group meeting on Thursday 7th November in Swansea. A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques
Join the fertility group meeting on Thursday 7th November in Swansea. A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques
AliceMatthews
in
Thyroid UK
5 years ago
Starting Treatment
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
12Caine12
in
CLL Support
5 years ago
MD Anderson/Mayo or Peter MacCallum for treatment?
Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow. The FISH test is not available yet until next week so the treatment plan is also not available. But seem that he’s on Stage IV under RAI classification
Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow. The FISH test is not available yet until next week so the treatment plan is also not available. But seem that he’s on Stage IV under RAI classification
writepa
in
CLL Support
5 years ago
Copd and panic breathing.
My hubby has severe copd and has been in hospital with chest infection but his breathlessness is made worse when he starts to panic,the hospital has put him on 1mg of lorazepam to take when he needs to ,has this been any help to other sufferers,he has also started a course of Erdosteine which he takes
My hubby has severe copd and has been in hospital with chest infection but his breathlessness is made worse when he starts to panic,the hospital has put him on 1mg of lorazepam to take when he needs to ,has this been any help to other sufferers,he has also started a course of Erdosteine which he takes
Dazbazbez
in
Lung Conditions Community Forum
5 years ago
Global blood supply runs low - and that's a worry for those with CLL
A study funded by the National Institutes of Health reports that [i]"Nearly two-thirds of countries worldwide have an insufficient supply of blood for transfusion, according to findings from a recent modeling study including 195 countries and territories.[/i] [i]:[/i] [i]Shortages are attributable to
A study funded by the National Institutes of Health reports that [i]"Nearly two-thirds of countries worldwide have an insufficient supply of blood for transfusion, according to findings from a recent modeling study including 195 countries and territories.[/i] [i]:[/i] [i]Shortages are attributable to
AussieNeil
Partner
in
CLL Support
5 years ago
What is ERIC and Why Should We Care?
Dr. Stamatopolous is one of its directors and in these short videos he talks about ERIC in general and its first big meeting. He then discusses his research on the “cognitive dissonance” we all know so well when we are diagnosed with an incurable cancer and then told we need no treatment. Next he explains
Dr. Stamatopolous is one of its directors and in these short videos he talks about ERIC in general and its first big meeting. He then discusses his research on the “cognitive dissonance” we all know so well when we are diagnosed with an incurable cancer and then told we need no treatment. Next he explains
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Night sweats ONION SCENT
My wife has noted that my night sweats come with a strong onion scent in the air while I sleep ..I detected it on my clothes if I work and get a lather going I have smelled it also this is a new one on me I shower 2 times a day and am embarrassed by the New aroma I hope
My wife has noted that my night sweats come with a strong onion scent in the air while I sleep ..I detected it on my clothes if I work and get a lather going I have smelled it also this is a new one on me I shower 2 times a day and am embarrassed by the New aroma I hope
lacroixx1
in
CLL Support
5 years ago
Patient Advisory Board of patients (and caregivers) with Warm Autoimmune Hemolytic Anemia (wAIHA)
Hello, I wanted to give all of you a heads up (and a head start) on an exciting opportunity that Savvy Co-op is going to release on Monday. The co-op has an opportunity to build an advisory board of patients (and caregivers) with Warm Autoimmune Hemolytic Anemia (wAIHA). wAIHA can often present
Hello, I wanted to give all of you a heads up (and a head start) on an exciting opportunity that Savvy Co-op is going to release on Monday. The co-op has an opportunity to build an advisory board of patients (and caregivers) with Warm Autoimmune Hemolytic Anemia (wAIHA). wAIHA can often present
lankisterguy
Volunteer
in
CLL Support
5 years ago
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