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Chronic leukaemia
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p17 deletion. Can anyone advise or cheer me up?!
I’m 79, living in UK and 18 months into being diagnosed with
Chronic
lymphocytic
leukaemia
(CLL) and suspected
Chronic
myelomonocytic
leukaemia
(CMML), I have been still at early stage and not needing treatment.
I’m 79, living in UK and 18 months into being diagnosed with
Chronic
lymphocytic
leukaemia
(CLL) and suspected
Chronic
myelomonocytic
leukaemia
(CMML), I have been still at early stage and not needing treatment.
Fogey
in
CLL Support
6 months ago
Venetoclax has been added to the Pharmaceutical Benefits Scheme in Australia for use as a retreatment for CLL/SLL
The PBS Listing states: [i]"
Chronic
lymphocytic
leukaemia
(CLL)[/i] [i]Treatment Phase: Dose titration occurring at the start of treatment for relapsed/refractory disease[/i] [i]Clinical criteria:[/i] [i]The condition must have relapsed or be refractory to at least one prior therapy,[/i] [i]AND[
The PBS Listing states: [i]"
Chronic
lymphocytic
leukaemia
(CLL)[/i] [i]Treatment Phase: Dose titration occurring at the start of treatment for relapsed/refractory disease[/i] [i]Clinical criteria:[/i] [i]The condition must have relapsed or be refractory to at least one prior therapy,[/i] [i]AND[
CLLerinOz
Volunteer
in
CLL Support
7 months ago
uMRD 6
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
skipro
in
CLL Support
4 days ago
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Background
I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently
I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently
leftysfsl1945
in
CLL Support
5 days ago
Lefty
I earned a degree in Electrical Engineering from the University of California, Berkeley. Worked in Silicon Valley for several years and managed to join a start up company prior to it going public that was very successful. During 2015 I started seeing a Naturopathic doctor and became impressed with
I earned a degree in Electrical Engineering from the University of California, Berkeley. Worked in Silicon Valley for several years and managed to join a start up company prior to it going public that was very successful. During 2015 I started seeing a Naturopathic doctor and became impressed with
leftysfsl1945
in
CLL Support
6 days ago
first line treatment with bendamustin and rithoximab
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
09123836306
in
CLL Support
8 days ago
Understanding PET Scan Results with CLL
Hello! I was diagnosed with CLL (11Q) in 2013. On Ibrutinib since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's
Hello! I was diagnosed with CLL (11Q) in 2013. On Ibrutinib since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's
FlaKeys
in
CLL Support
20 days ago
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
23 days 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
1 month 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
Volunteer
in
CLL Support
1 month 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
1 month 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
1 month 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
2 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
2 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
2 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
2 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
2 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
2 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
2 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
2 months ago
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