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Caffeine reduction
I have supposedly got COPD and use a Fostair Nexthaler but since cutting right down on caffeine my breathing has massively improved. Also the pressure that my APAP runs at is 3-4 cm lower as well Why has reducing caffeine had such a great effect
I have supposedly got COPD and use a Fostair Nexthaler but since cutting right down on caffeine my breathing has massively improved. Also the pressure that my APAP runs at is 3-4 cm lower as well Why has reducing caffeine had such a great effect
Hidden
in
Lung Conditions Community Forum
5 years ago
CLL Specialist
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
Hidden
in
CLL Support
5 years ago
Leukaemia Care Updated Patient Information - Richter's Syndrome in Chronic Lymphocytic Leukaemia
Leukaemia Care is a UK charity so the support information is UK based. However the information about Richter's is useful, up to date and well laid out. https://media.leukaemiacare.org.uk/wp-content/uploads/Richter-Syndrome-in-Chronic-Lymphocytic-Leukaemia-CLL-Web-Version.pdf Jackie
UPDATE:
Leukaemia Care is a UK charity so the support information is UK based. However the information about Richter's is useful, up to date and well laid out. https://media.leukaemiacare.org.uk/wp-content/uploads/Richter-Syndrome-in-Chronic-Lymphocytic-Leukaemia-CLL-Web-Version.pdf Jackie
UPDATE:
Jm954
Administrator
in
CLL Support
5 years ago
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CLL Transformation - Richter's?
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
SarasotaPaul
in
CLL Support
5 years ago
iWCLL Guidelines for the diagnosis, management and treatment of CLL - a brief history and the changes in last year's long awaited update
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
AussieNeil
Partner
in
CLL Support
5 years ago
Dietary Restrictions to Prolong the Life of a Kidney Transplant
It has been found that if patients substitute soya or some vegetable source for the animal proteins they normally eat and severely restrict the amount of salt they normally consume they can significantly slow the decline of renal transplants. From personal experience I can say that such a diet really
It has been found that if patients substitute soya or some vegetable source for the animal proteins they normally eat and severely restrict the amount of salt they normally consume they can significantly slow the decline of renal transplants. From personal experience I can say that such a diet really
Falkenhayn
in
Kidney Transplant Patient Support
5 years ago
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
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
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