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Detected with CLL
Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with no symptoms so i was on wait and watch,after few months i got brain hamerroage and i was in hospital for 1 month after that i recovered but still my left side is weak , my wbc increased gradually and after 3 years it has
Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with no symptoms so i was on wait and watch,after few months i got brain hamerroage and i was in hospital for 1 month after that i recovered but still my left side is weak , my wbc increased gradually and after 3 years it has
Kkkaaarrr
in
CLL Support
5 months ago
Quercetin
I am taking Vimerson Health's Tumeric/Quercetin/Bromelain combination. Presently only taking the recommended two capsules per day in the morning. Been on Watch and Wait since 2019. White count is slowly creeping up (now at 30.8 - a year ago I was at 20.9). Other numbers Lymphs at #25, MCV at 96.9
I am taking Vimerson Health's Tumeric/Quercetin/Bromelain combination. Presently only taking the recommended two capsules per day in the morning. Been on Watch and Wait since 2019. White count is slowly creeping up (now at 30.8 - a year ago I was at 20.9). Other numbers Lymphs at #25, MCV at 96.9
CBME
in
CLL Support
5 months ago
The 2024 Global Patient Survey invites CLL patients and caregivers to share their experiences
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
CLLerinOz
Administrator
in
CLL Support
5 months ago
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Advice regarding setting of expectations ahead of cardiology appointment would be appreciated.
AF since March 23. Currently only really experiencing breathlessness on inclines. No experience of HR over 100 (as far as I know). Devices confirm persistent AF since March. Echo revealed a few mild heart failure issues and recommended cardiology review, which is due in a couple of weeks. My question
AF since March 23. Currently only really experiencing breathlessness on inclines. No experience of HR over 100 (as far as I know). Devices confirm persistent AF since March. Echo revealed a few mild heart failure issues and recommended cardiology review, which is due in a couple of weeks. My question
Hallane
in
AF Association
9 months ago
watch and wait.
Hi all, I haven’t posted in a while. I am after some thoughts on results really.. I am based in the UK. Diagnosed in Oct 2022 after a chance blood test for something else. A familiar story from what I have read. A specialist at the time said I was a bit early for the disease! I’m now nearly 50. I
Hi all, I haven’t posted in a while. I am after some thoughts on results really.. I am based in the UK. Diagnosed in Oct 2022 after a chance blood test for something else. A familiar story from what I have read. A specialist at the time said I was a bit early for the disease! I’m now nearly 50. I
T7374
in
CLL Support
5 months ago
Beta 2 Microglobulin
Hi. I'm considering getting a Beta 2 Microglobulin blood test done. I have CLL and on W&W. Has anyone else had this done?
Hi. I'm considering getting a Beta 2 Microglobulin blood test done. I have CLL and on W&W. Has anyone else had this done?
ColSte
in
CLL Support
5 months ago
A potential game-changer for CAR T cell therapy: mutations in cancer engineered to beat cancer
CAR T therapy has been successful in some acute blood cancers. Response rates, however, are considerably lower in CLL and solid tumours, with T cell exhaustion and antigen escape being shared issues. A potentially game-changing advance in solid tumour CAR T technology may therefore be relevant to CAR
CAR T therapy has been successful in some acute blood cancers. Response rates, however, are considerably lower in CLL and solid tumours, with T cell exhaustion and antigen escape being shared issues. A potentially game-changing advance in solid tumour CAR T technology may therefore be relevant to CAR
bennevisplace
in
CLL Support
5 months ago
CLL diagnosis
Hello all, I have just been diagnosed with CLL, because of a blood test in preparation for knee replacement surgery! I have a no symptoms other than mild fatigue. The encologist said this disease doesn’t mean that it’s the end. Some people go for years without symptoms. I am in good health and stay fit
Hello all, I have just been diagnosed with CLL, because of a blood test in preparation for knee replacement surgery! I have a no symptoms other than mild fatigue. The encologist said this disease doesn’t mean that it’s the end. Some people go for years without symptoms. I am in good health and stay fit
Tonightweride
in
CLL Support
6 months ago
Hematocrit and CLL
Is it typical to have high hematocrit with CLL?I was diagnosed in 2020 with a favorable prognosis. I see oncologist each 4 months. It's the longest interval she permits. My last appointment I had: WBC 15.0 HCT 51% My MD has suggested possibly (about a year ago but nothing since then) taking hydroxyurea
Is it typical to have high hematocrit with CLL?I was diagnosed in 2020 with a favorable prognosis. I see oncologist each 4 months. It's the longest interval she permits. My last appointment I had: WBC 15.0 HCT 51% My MD has suggested possibly (about a year ago but nothing since then) taking hydroxyurea
Jessielab
in
CLL Support
6 months ago
Thorocentecis
Hi guys....a recent CT scan showed some pleural effusion but nothing else...no nodes, growths or nodules, and a blood test showed no heart failure.I have to have the fluid removed on Monday and I'm bricking it already. I don't make a very good patient; former nurse; and I'm a wuss when it comes to pain
Hi guys....a recent CT scan showed some pleural effusion but nothing else...no nodes, growths or nodules, and a blood test showed no heart failure.I have to have the fluid removed on Monday and I'm bricking it already. I don't make a very good patient; former nurse; and I'm a wuss when it comes to pain
sue32
in
Lung Conditions Community Forum
9 months ago
Cll back after 4yrs
Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Daisy1993
in
CLL Support
6 months ago
Does anyone have CLL and MDS?
I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica was just approved by FDA was on imbruvica for 5 year. Went into remission again for two years. I was testing with low dose again with imbruvica
I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica was just approved by FDA was on imbruvica for 5 year. Went into remission again for two years. I was testing with low dose again with imbruvica
DaveCll
in
CLL Support
6 months ago
To Trial or not to Trial?
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
SunnyCA
in
CLL Support
6 months ago
Immune system changes during BTKi treatment
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Fogey
in
CLL Support
6 months ago
MRD Results
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
spi3
in
CLL Support
6 months ago
teeth whitening
good morning everyone I don’t know if anyone on here has had any experience with tooth whitening products, only I’ve seen an advert for a tooth whitening powder which I’m very tempted to try, especially as it’s dentist approved and is peroxide-free. I’m just wondering about the Alendronic Acid I’m
good morning everyone I don’t know if anyone on here has had any experience with tooth whitening products, only I’ve seen an advert for a tooth whitening powder which I’m very tempted to try, especially as it’s dentist approved and is peroxide-free. I’m just wondering about the Alendronic Acid I’m
Doraflora
in
PMRGCAuk
1 year ago
Overdosing bisoprolol- can anyone offer advice?
I don’t know whether it is where I live ( the NW) but I really struggle to get appropriate treatment. Anyway I picked up my meds on Saturday. Opened them in the car and noticed my bisoprolol was suddenly in 5 mg tablets not 2.5 mg. I went back into the pharmacy to be told that I have been on 5 mg tablets
I don’t know whether it is where I live ( the NW) but I really struggle to get appropriate treatment. Anyway I picked up my meds on Saturday. Opened them in the car and noticed my bisoprolol was suddenly in 5 mg tablets not 2.5 mg. I went back into the pharmacy to be told that I have been on 5 mg tablets
Rhiannonimity1
in
AF Association
9 months ago
update
not sure if you remember I was in and out of hospital a few times with undiagnosed bilateral pleural effusions. Well the next stage was to get some biopsy’s done to see if they can find out the cause but in clinic on Thursday I was told a meeting will be held on Tuesday to see if I now qualify for that
not sure if you remember I was in and out of hospital a few times with undiagnosed bilateral pleural effusions. Well the next stage was to get some biopsy’s done to see if they can find out the cause but in clinic on Thursday I was told a meeting will be held on Tuesday to see if I now qualify for that
Numptybrain
in
Lung Conditions Community Forum
9 months ago
Venetoclax
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
JoeMcDote
in
CLL Support
6 months ago
Overwhelming Fatigue
I ama 62 year old female. I have been on hemodialysis then peritoneal dialysis and back to hemodialysis over the past five years. I felt great for the two years on peritoneal. Was able to work and go about my daily routine. The peritoneal stopped working and I have been back on hemodialysis for about
I ama 62 year old female. I have been on hemodialysis then peritoneal dialysis and back to hemodialysis over the past five years. I felt great for the two years on peritoneal. Was able to work and go about my daily routine. The peritoneal stopped working and I have been back on hemodialysis for about
Frankie24
in
Kidney Dialysis
1 year ago
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