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Welcome to the Myalgic Encephalomyelitis Community for support of ME/CFS! We’re very glad you have chosen to be a part of our community. The Myalgic Encephalomyelitis community - offered by HealthUnlocked (HU) - supports individuals affected by ME/CFS. Whether you are an individual who has been diagnosed
Welcome to the Myalgic Encephalomyelitis Community for support of ME/CFS! We’re very glad you have chosen to be a part of our community. The Myalgic Encephalomyelitis community - offered by HealthUnlocked (HU) - supports individuals affected by ME/CFS. Whether you are an individual who has been diagnosed
SaskiaHU
HealthUnlocked
in
Myalgic Encephalomyelitis Community
5 years ago
High creatinine normal bun
Hi there I have iga nephropathy. I got diagnosed with this last year with 1.8 creatinine. Now latest tests showed Bun 17mg and creatinine 3mg/dl.has anyone got any experience as I have heard that if creatinine is high bun is also high. Any comments please.
Hi there I have iga nephropathy. I got diagnosed with this last year with 1.8 creatinine. Now latest tests showed Bun 17mg and creatinine 3mg/dl.has anyone got any experience as I have heard that if creatinine is high bun is also high. Any comments please.
Umerpk
in
Early CKD Support
5 years ago
Ibrutinib Plus Venetoclax in Relapsed/Refractory Chronic Lymphocytic Leukemia: Update on The CLARITY Study
Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We have some members who are in this important CLARITY Study in UK. CLARITY is a phase II trial that combined ibrutinib with venetoclax in patients with relapsed or refractory CLL. The primary end point was eradication of MRD after
Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We have some members who are in this important CLARITY Study in UK. CLARITY is a phase II trial that combined ibrutinib with venetoclax in patients with relapsed or refractory CLL. The primary end point was eradication of MRD after
Jm954
Administrator
in
CLL Support
5 years ago
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Experience with Fludarabine & Rituximab?
Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to begin with combination of Rituximab + Fludarabine (in-patient treatment, via injections). I just wanted to know if anyone else has received this
Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to begin with combination of Rituximab + Fludarabine (in-patient treatment, via injections). I just wanted to know if anyone else has received this
Dolce1
in
CLL Support
5 years ago
What is CAR-T therapy? An expert explains in simple terms
Not specific to CLL but informative. CAR-T therapy is a completely new type of therapy that uses the immune system to kill cancer cells. In some cases it has cured people where all other treatments have failed. Professor Karl Peggs, Scientific Director of the National Institute for Health Research (NIHR
Not specific to CLL but informative. CAR-T therapy is a completely new type of therapy that uses the immune system to kill cancer cells. In some cases it has cured people where all other treatments have failed. Professor Karl Peggs, Scientific Director of the National Institute for Health Research (NIHR
Jm954
Administrator
in
CLL Support
5 years ago
Association of gene mutations with time‐to‐first treatment in 384 treatment‐naive chronic lymphocytic leukaemia patients
First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately This study correlated somatic mutation results and known prognostic factors with time‐to‐first treatment (TTFT) in 384 treatment‐naïve (TN) chronic lymphocytic leukaemia (CLL) patients to help determine disease‐specific
First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately This study correlated somatic mutation results and known prognostic factors with time‐to‐first treatment (TTFT) in 384 treatment‐naïve (TN) chronic lymphocytic leukaemia (CLL) patients to help determine disease‐specific
Jm954
Administrator
in
CLL Support
5 years ago
New to it all
62 yo male here; was diagnosed with CLL in November of 2018. After three sets of bloodwork, a CT and a boner marrow biopsy Im told I continue on watch and wait. My only symptom is extreme fatigue which precludes me from working 8 hours a day. I should note that I’m also a long time bariatric patient.
62 yo male here; was diagnosed with CLL in November of 2018. After three sets of bloodwork, a CT and a boner marrow biopsy Im told I continue on watch and wait. My only symptom is extreme fatigue which precludes me from working 8 hours a day. I should note that I’m also a long time bariatric patient.
Pokerguy
in
CLL Support
5 years ago
CLL and Medical Marijuana
Has anyone found Medical marijuana CBD/THC tincture to be helpful with sleep and anxiety due to watch and wait stage? Injesting anything foreign is a concern with a compromised immune system but the same can be said for Chemo. ?
Has anyone found Medical marijuana CBD/THC tincture to be helpful with sleep and anxiety due to watch and wait stage? Injesting anything foreign is a concern with a compromised immune system but the same can be said for Chemo. ?
Madprofessor22
in
CLL Support
5 years ago
IBS tummy pain unbearable
Has anyone got any advice for dealing with bad tummy pains? I’ve had IBS for about 6-7 years but I’m just getting so fed up with the pain. It’s so bad I can hardly stand for 2 sometimes up to 5 hours until it goes away and it’s happening roughly two or three times a month. Nothing seems to help the
Has anyone got any advice for dealing with bad tummy pains? I’ve had IBS for about 6-7 years but I’m just getting so fed up with the pain. It’s so bad I can hardly stand for 2 sometimes up to 5 hours until it goes away and it’s happening roughly two or three times a month. Nothing seems to help the
Rainelee
in
IBS Network
5 years ago
GRAVES AND THYROTOXICOSIS : URINARY TRACT, ENDOCRINE SYSTEM
Graves’ Disease and the Manifestations of Thyrotoxicosis DeGroot LJ. https://www.ncbi.nlm.nih.gov/books/NBK285567/ URINARY TRACT Polyuria and occasionally glycosuria are seen in uncomplicated thyrotoxicosis. Standard clinical renal function tests give normal results. Glycosuria may reflect accelerated
Graves’ Disease and the Manifestations of Thyrotoxicosis DeGroot LJ. https://www.ncbi.nlm.nih.gov/books/NBK285567/ URINARY TRACT Polyuria and occasionally glycosuria are seen in uncomplicated thyrotoxicosis. Standard clinical renal function tests give normal results. Glycosuria may reflect accelerated
ling
in
Thyroid UK
5 years ago
Mode of Progression After Frontline Treatment Predicts Clinical Outcomes in Patients With CLL
Not only is CLL heterogeneous in watch and wait, that's also the case after treatment. An analysis of over 2,000 patients from three German CLL Study Group clinical trials has identified that unfit patients developing lymphadenopathy (swelling nodes) have a significantly lower median overall survival
Not only is CLL heterogeneous in watch and wait, that's also the case after treatment. An analysis of over 2,000 patients from three German CLL Study Group clinical trials has identified that unfit patients developing lymphadenopathy (swelling nodes) have a significantly lower median overall survival
AussieNeil
Partner
in
CLL Support
5 years ago
cll/sll or MZL? & Rituxan
I'm month three of trying to get properly diagnosed. Initial cll/sll diagnosis now in doubt at two leading cancer centers because I am cd20 bright. So MZL or some other type of small b cell lymphoma is hypothesized. Yesterday I saw a lymphoma specialist who recommended rituxan now even though I don't
I'm month three of trying to get properly diagnosed. Initial cll/sll diagnosis now in doubt at two leading cancer centers because I am cd20 bright. So MZL or some other type of small b cell lymphoma is hypothesized. Yesterday I saw a lymphoma specialist who recommended rituxan now even though I don't
Sunfishjoy
in
CLL Support
5 years ago
Discontinuation of ibrutinib
Hi everyone! It´s been a while since my last post. My mother continues taking ibrutinib, almost 3 years now and doing fine. But right now she has to prepare for a digestive endoscopy, which is ineluctable, so she has to discontinue ibrutinib treatment. My mother is very sensitive to these kind of discontinuations
Hi everyone! It´s been a while since my last post. My mother continues taking ibrutinib, almost 3 years now and doing fine. But right now she has to prepare for a digestive endoscopy, which is ineluctable, so she has to discontinue ibrutinib treatment. My mother is very sensitive to these kind of discontinuations
nicolas_12
in
CLL Support
5 years ago
Growth dynamics in naturally progressing chronic lymphocytic leukaemia
Abstract from Nature, 29/5/19 - Unfortunately the whole article is behind a paywall. [i]"We used the indolent growth dynamics of chronic lymphocytic leukaemia (CLL) to analyse the growth rates and corresponding genomic patterns of leukaemia cells from 107 patients with CLL, spanning decades-long disease
Abstract from Nature, 29/5/19 - Unfortunately the whole article is behind a paywall. [i]"We used the indolent growth dynamics of chronic lymphocytic leukaemia (CLL) to analyse the growth rates and corresponding genomic patterns of leukaemia cells from 107 patients with CLL, spanning decades-long disease
Jm954
Administrator
in
CLL Support
5 years ago
No comfort from Insurance Cos while suffering from Cancer
It’s 3 years since I was diagnosed with CLL stage 0 and got another set back yesterday Turned down for LTC policy While I did not ask for this cancer yet I feel like a second class citizen I understand there is risk to the insurance company and underwriters but during times of suffering one of the
It’s 3 years since I was diagnosed with CLL stage 0 and got another set back yesterday Turned down for LTC policy While I did not ask for this cancer yet I feel like a second class citizen I understand there is risk to the insurance company and underwriters but during times of suffering one of the
Hidden
in
CLL Support
5 years ago
Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!
Welcome to the CLL Support community on HealthUnlocked, a very active community with 23,000 members. This pinned post is specifically for new members, in particular those that have been recently diagnosed with Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma CLL/SLL. (CLL and SLL are the same
Welcome to the CLL Support community on HealthUnlocked, a very active community with 23,000 members. This pinned post is specifically for new members, in particular those that have been recently diagnosed with Chronic Lymphocytic Leukaemia/Small Lymphocytic Lymphoma CLL/SLL. (CLL and SLL are the same
AussieNeil
Partner
in
CLL Support
5 years ago
MRD-U Baby your one of four in two million!
So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and to talk about odd things or decision points with. He explained that one of the tests that had been done in my bone marrow had a sensitivity
So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and to talk about odd things or decision points with. He explained that one of the tests that had been done in my bone marrow had a sensitivity
AdrianUK
in
CLL Support
5 years ago
Spiriva respimat.
Hi all. I found this recently. It's from 2011 in the British medical journal with regards Spiriva respimat. As someone with COPD and a heart condition I shall be aiming to come off it. Especially as I've been having palpitations since I've been using it. You may want to check it out for yourselves.
Hi all. I found this recently. It's from 2011 in the British medical journal with regards Spiriva respimat. As someone with COPD and a heart condition I shall be aiming to come off it. Especially as I've been having palpitations since I've been using it. You may want to check it out for yourselves.
Gazza01
in
Lung Conditions Community Forum
5 years ago
CLL Society Tribune!
Welcome to the Second 2019 Issue of The CLL Society Tribune. https://cllsociety.org/quarter-2-2019-volume-5-issue-2/?utm_source=CLL+Tribune+Q2+2019&utm_campaign=Quarter+2+2019%3A+Volume+5+Issue+2&utm_medium=email Dear Friends and Supporters of the CLL Society. Welcome to the growing and evolving
Welcome to the Second 2019 Issue of The CLL Society Tribune. https://cllsociety.org/quarter-2-2019-volume-5-issue-2/?utm_source=CLL+Tribune+Q2+2019&utm_campaign=Quarter+2+2019%3A+Volume+5+Issue+2&utm_medium=email Dear Friends and Supporters of the CLL Society. Welcome to the growing and evolving
lankisterguy
Volunteer
in
CLL Support
5 years ago
Clinical trial results & reviews of new treatments for CLL written in easy to understand terms
Anyone interested in reading a weekly update of the latest breaking news for CLL may want to sign up to get emails from this source: https://medivizor.com/?login=2 Here are the three links for the articles mentioned in the picture above: https://medivizor.com/view_article/29947395?id=31210 https://
Anyone interested in reading a weekly update of the latest breaking news for CLL may want to sign up to get emails from this source: https://medivizor.com/?login=2 Here are the three links for the articles mentioned in the picture above: https://medivizor.com/view_article/29947395?id=31210 https://
lankisterguy
Volunteer
in
CLL Support
5 years ago
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