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AF and heart failure
Hi everyone i had some blood tests done just routine but they called me in for an appointment, they said my blood tests were abnormal and that it wasn’t urgent. Anyway have spoken to a doctor today and she said one of the tests is showing heart failure and not to worry and they are booking me in for
Hi everyone i had some blood tests done just routine but they called me in for an appointment, they said my blood tests were abnormal and that it wasn’t urgent. Anyway have spoken to a doctor today and she said one of the tests is showing heart failure and not to worry and they are booking me in for
Gillybean123
in
AF Association
7 months ago
Understanding my GP's message
I am in permanent AF and taking Edoxaban, Bisoporol and Ramipril. Recently, at my GP's request I wore a 24 hour ECG monitor. Looking at the GP's referral for that on the NHS app it seems she suspected heart failure. Have just had a message from the GP which said ' 24hr ECG reported that the rhythm
I am in permanent AF and taking Edoxaban, Bisoporol and Ramipril. Recently, at my GP's request I wore a 24 hour ECG monitor. Looking at the GP's referral for that on the NHS app it seems she suspected heart failure. Have just had a message from the GP which said ' 24hr ECG reported that the rhythm
thinkingaloud
in
Atrial Fibrillation Support
7 months ago
AF and heart failiure
Hi, I am 56 and new to this community, I have had AF since 2019, I don't have symptoms. It was discovered when I was knocked of my motorbike as the paramedic noticed my heart rate hadn't gone down, Initially I was in and out of AF. I had a review in September 2023 and the tests highlighted thast
Hi, I am 56 and new to this community, I have had AF since 2019, I don't have symptoms. It was discovered when I was knocked of my motorbike as the paramedic noticed my heart rate hadn't gone down, Initially I was in and out of AF. I had a review in September 2023 and the tests highlighted thast
Flippy1
in
Atrial Fibrillation Support
7 months ago
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New DX
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
pkpayne
in
CLL Support
2 months ago
A recent consultation with a CLL specialist, and confirmation of genetic markers
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
Sagarcanada
in
CLL Support
2 months ago
Xpo1 significance
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
NewCll
in
CLL Support
2 months ago
James
I have heart failure. Approx 38% ejection fraction. I'm on Entresto and 6 other tablets including Dapagliflozin, eplerenone , beta blocker, aspirin, and a statin.Tested for new drug to enter trial, but my BNP was too low (44). Feel very fatigued at times but try and walk or do some sort of exercise
I have heart failure. Approx 38% ejection fraction. I'm on Entresto and 6 other tablets including Dapagliflozin, eplerenone , beta blocker, aspirin, and a statin.Tested for new drug to enter trial, but my BNP was too low (44). Feel very fatigued at times but try and walk or do some sort of exercise
Genteel1
in
AF Association
7 months ago
a diagnosis at last
saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t think I have it quite right but it’s called ana plastic lymphoma ( apparently a rare form that mutates from CLL ) I will have six courses
saw consultant yesterday I have almost completed diagnosis few more tests to come . it would seem that my CLL has mutated into a quite a rare lymphoma I don’t think I have it quite right but it’s called ana plastic lymphoma ( apparently a rare form that mutates from CLL ) I will have six courses
Hilo13
in
CLL Support
2 months ago
Dr. Joel Wallach
Is there anybody who has heard of the teachings of Dr. Joel Wallach who says that AF is not caused by a condition of the heart but instead because the Vagus Nerve is being "pinched", either along the spine or at the head where it enters the skull. As you may know, the Vagus Nerve goes down the length
Is there anybody who has heard of the teachings of Dr. Joel Wallach who says that AF is not caused by a condition of the heart but instead because the Vagus Nerve is being "pinched", either along the spine or at the head where it enters the skull. As you may know, the Vagus Nerve goes down the length
Pommerania78
in
AF Association
7 months ago
Atrial fibrilation
I was diagnosed on 9th december 2023 with Atrial fibrilattion after an e.c.g. prescribed edoxaban 60mg and bisoprolol 5mg x 1 in a morning x 1 at night. X to stop propanolol for migraine. Ive had waves of anxiousness wash over me not lot . I had been feeling off it a feŵ weeks with palpitations x feeling
I was diagnosed on 9th december 2023 with Atrial fibrilattion after an e.c.g. prescribed edoxaban 60mg and bisoprolol 5mg x 1 in a morning x 1 at night. X to stop propanolol for migraine. Ive had waves of anxiousness wash over me not lot . I had been feeling off it a feŵ weeks with palpitations x feeling
Sawny15
in
AF Association
7 months ago
Introduction
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going
bodgit
in
CLL Support
3 months ago
Introduction
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going on with
Hi I decided to join after my wife recommended this truly excellent resource and community. I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support. Not really looking forward to reading more about the condition but need to understand what’s going on with
Artycrafter
in
CLL Support
3 months ago
Is it the time for initial treatment?
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
Sagarcanada
in
CLL Support
3 months ago
Good News…..
In August I became ill with what amounted to heart failure symptoms, breathlessness, fluid on lungs, circulation issues. A bnp test came back with moderately high readings for heart failure (1300) . I eventually had an echocardiogram and have been waiting for the results. Meanwhile I discovered that
In August I became ill with what amounted to heart failure symptoms, breathlessness, fluid on lungs, circulation issues. A bnp test came back with moderately high readings for heart failure (1300) . I eventually had an echocardiogram and have been waiting for the results. Meanwhile I discovered that
Rhiannonimity1
in
AF Association
7 months ago
Stomach heavy is due to a swollen spleen?
My wife has had CLL since 2020 and is still in the W&W stage. For the past few months, she has complained that her stomach is becoming heavy, implying that it is full of food. I take care of my wife. I seek additional posts. I don't find much of it. I suppose that could be related to a swollen spleen
My wife has had CLL since 2020 and is still in the W&W stage. For the past few months, she has complained that her stomach is becoming heavy, implying that it is full of food. I take care of my wife. I seek additional posts. I don't find much of it. I suppose that could be related to a swollen spleen
Sagarcanada
in
CLL Support
3 months ago
Great news from my MDAnderson doctor
I was originally diagnosed in May, 2011 and had a long 9 year watch and wait. Feb,2020 Dr Thompson put me on Calquence as I was become a little anemic and this treatment gave me great results. Feb, 2022 Dr. T and I agreed to add Venetoclax in an attempt to try to reach uMRD and have a drug
I was originally diagnosed in May, 2011 and had a long 9 year watch and wait. Feb,2020 Dr Thompson put me on Calquence as I was become a little anemic and this treatment gave me great results. Feb, 2022 Dr. T and I agreed to add Venetoclax in an attempt to try to reach uMRD and have a drug
DGG1931
in
CLL Support
3 months ago
Bendamustine
Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab In 2021 I received only 1 cycle of Bendamustine (90) + Rituximab. No further cycles because of hemolyse. 2024 Now possibly Venetoclax + ? Appointment with oncologist next friday. Not much of a help. Best regards,
Hi Male from 1946. Diagnosed for CLL in 1995. 2013 : Leukeran + Rituximab In 2021 I received only 1 cycle of Bendamustine (90) + Rituximab. No further cycles because of hemolyse. 2024 Now possibly Venetoclax + ? Appointment with oncologist next friday. Not much of a help. Best regards,
dickcll
in
CLL Support
3 months ago
Acalabrutinib, venetoclax and obinutuzumab in relapsed CLL: Phase 2 CLL2-BAAG trial results from the German CLL Study Group
Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations, who are wondering how they will fare with a subsequent treatment. This phase 2 trial of 44 relapsed patients included 34 (75.6%) who had unmutated IGHV and 14/44 (31.8%) who had TP53 aberrations. A Measurable Residual
Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations, who are wondering how they will fare with a subsequent treatment. This phase 2 trial of 44 relapsed patients included 34 (75.6%) who had unmutated IGHV and 14/44 (31.8%) who had TP53 aberrations. A Measurable Residual
AussieNeil
Partner
in
CLL Support
3 months ago
Low vitamin d high serum ferritin
Hello My husband has been on watch and wait for 12 years. Due to a constant chronic cough he recently had a blood test which showed low vitamin D levels of 45 and high serum ferritin levels of 936. He has been referred back to haematology but in the meantime just wondering if anyone can tell me if there
Hello My husband has been on watch and wait for 12 years. Due to a constant chronic cough he recently had a blood test which showed low vitamin D levels of 45 and high serum ferritin levels of 936. He has been referred back to haematology but in the meantime just wondering if anyone can tell me if there
Debs4
in
CLL Support
3 months ago
It wont be long
Hi All I have seen my Consultant today and she said it is time to start thinking about treatment. Not what I wanted to hear but after 14 years W&W I guessed it would come one day. She will arrange a CT Scan to check on Tumour burden (I think thats right) then just waiting on this. TP53 - deletion
Hi All I have seen my Consultant today and she said it is time to start thinking about treatment. Not what I wanted to hear but after 14 years W&W I guessed it would come one day. She will arrange a CT Scan to check on Tumour burden (I think thats right) then just waiting on this. TP53 - deletion
TheFlyer
in
CLL Support
3 months ago
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