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So this is what it is like to be really poorly
I got diagnosed with CLL in Dec (chronic
leukaemia
) which is early stage and treatable if and when needed. But because of this incidental diagnosis, my rheumatologist took me off my Humira until the haematologist said it was safe to continue. Which it is.
I got diagnosed with CLL in Dec (chronic
leukaemia
) which is early stage and treatable if and when needed. But because of this incidental diagnosis, my rheumatologist took me off my Humira until the haematologist said it was safe to continue. Which it is.
cornflake
in
NRAS
4 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
2 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
2 months ago
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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
2 months ago
sudden purple mark over eye
hi - background is that I’m being watched for slightly elevated platelets and wbc but I’ve tested neg for gene mutations and had a normal bmb several years ago, so no diagnosis and hematologists so far have not felt there’s an Mpn or other issue. Today, of the blue a purplish mark about 3/4 in by
hi - background is that I’m being watched for slightly elevated platelets and wbc but I’ve tested neg for gene mutations and had a normal bmb several years ago, so no diagnosis and hematologists so far have not felt there’s an Mpn or other issue. Today, of the blue a purplish mark about 3/4 in by
Labbymom
in
MPN Voice
7 months ago
Ruxolitinib and skin cancers
Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty sarcomatoid squamous cell cancers , as it did for me, and having an aggressive dermatological condition to deal with (2 excisions, I false alarm excision
Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty sarcomatoid squamous cell cancers , as it did for me, and having an aggressive dermatological condition to deal with (2 excisions, I false alarm excision
Gipsy123
in
MPN Voice
7 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
CLL on the spine
UK based male with a lymphoma mass on T4-T-10 causing spinal compression at T-07. Diagnosed CLL only last week (April 2024)… but very low levels CLL under 15% biopsy/ blood. Biopsy Not taken from spine mass. any one else have CLL on their spine?
UK based male with a lymphoma mass on T4-T-10 causing spinal compression at T-07. Diagnosed CLL only last week (April 2024)… but very low levels CLL under 15% biopsy/ blood. Biopsy Not taken from spine mass. any one else have CLL on their spine?
BraddyB
in
CLL Support
3 months ago
CLL - Leukemia Cutis
Hello everyone. CLL Dx 2002, unmutated, Trisomy12, Notch 1. O+I 2 years, Off meds 2 years (heart surgery), WBC has been slowly rising ove4r the past 4 or 5 months, but I was never at MRD. A biopsy of a "rash" on my scalp shows Leukemia Cutis - most likely CLL related. Has anyone else had this? How
Hello everyone. CLL Dx 2002, unmutated, Trisomy12, Notch 1. O+I 2 years, Off meds 2 years (heart surgery), WBC has been slowly rising ove4r the past 4 or 5 months, but I was never at MRD. A biopsy of a "rash" on my scalp shows Leukemia Cutis - most likely CLL related. Has anyone else had this? How
misterbee
in
CLL Support
3 months ago
COVID-19 Infection effect on Urinary Incontinence and Mirabegron.
Now being a
Leukaemia
patient I'm immune compromised, BUT very luckily only mildly so in my case. So I take care in public spaces with hand squirt etc. Due to that, amazingly I've only just had my first COVID infection, with positive LFT tests for about 12 days.
Now being a
Leukaemia
patient I'm immune compromised, BUT very luckily only mildly so in my case. So I take care in public spaces with hand squirt etc. Due to that, amazingly I've only just had my first COVID infection, with positive LFT tests for about 12 days.
Ernest2
in
The Simon Foundation for Continence
8 months ago
My dad has CLL with TP53 mutation
As i am writing this im very frightened And i need someone with similar condition My dad was diagnosed back in 2019 With CLL he did about 3 sessions of chemotherapy and went back to remission Lately in January he noticed some lymph nodes in his neck as well as in his face After examination
As i am writing this im very frightened And i need someone with similar condition My dad was diagnosed back in 2019 With CLL he did about 3 sessions of chemotherapy and went back to remission Lately in January he noticed some lymph nodes in his neck as well as in his face After examination
Ornate2001
in
CLL Support
3 months ago
denosumab
Any one had experience of denosumab after 1st line CLL treatment? My gp is suggesting these jabs but he's new and as I've read that it can cause immunocompromised I'm wondering if it's such a good idea.. Help
Any one had experience of denosumab after 1st line CLL treatment? My gp is suggesting these jabs but he's new and as I've read that it can cause immunocompromised I'm wondering if it's such a good idea.. Help
RosettaClapp
in
CLL Support
3 months ago
Infections with Ruxolitinib
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Orangeboykitty
in
MPN Voice
8 months ago
need your help to learn about Clonal Hematopoiesis.
Greetings.Diagnosis with CLL/ Lymphoma in 2013, Was on Watchful Wait for almost 10 years, then started treatment with BTKI/Brukinsa for 9 months and had to stop the treatment due to the side effects, 3 months ago. Had a monthly blood tests in last 3 month while on Watchful Wait. By reviewing all the
Greetings.Diagnosis with CLL/ Lymphoma in 2013, Was on Watchful Wait for almost 10 years, then started treatment with BTKI/Brukinsa for 9 months and had to stop the treatment due to the side effects, 3 months ago. Had a monthly blood tests in last 3 month while on Watchful Wait. By reviewing all the
sunsetssr
in
CLL Support
3 months ago
brukinsa cll patient
cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 and lymphocyte absolute count of 27.6 should i be concerned.
cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 and lymphocyte absolute count of 27.6 should i be concerned.
ceciljr1958
in
CLL Support
3 months ago
atypical CLL treatment
Hi I am Rik, 63 yrs old,female, living in the Netherlands. I was dx with CLL dec 2020. Since 2014 increased lymphocytes, never followed up. Still W and W. But spleen is enlarging, fatigue increases, as condition gets a bit less. I am wondering if there are treatment experiences for atypical CLL ( cd5
Hi I am Rik, 63 yrs old,female, living in the Netherlands. I was dx with CLL dec 2020. Since 2014 increased lymphocytes, never followed up. Still W and W. But spleen is enlarging, fatigue increases, as condition gets a bit less. I am wondering if there are treatment experiences for atypical CLL ( cd5
Pinguin2024
in
CLL Support
3 months ago
Too Much Testing??
There has been numerous posts on Health Unlocked this week from younger, newly diagnosed CLL patients. There seems to be two type of people asking questions. People who don’t have access to a CLL specialist who are confused about next steps. And newly diagnosed, anxious people like me who have CLL specialists
There has been numerous posts on Health Unlocked this week from younger, newly diagnosed CLL patients. There seems to be two type of people asking questions. People who don’t have access to a CLL specialist who are confused about next steps. And newly diagnosed, anxious people like me who have CLL specialists
Hidden
in
CLL Support
3 months ago
CLL survival times ARE improving, thanks to BTK and BCL-2 inhibitors
Many of us were shocked after our CLL/SLL diagnosis when we googled for survival times. [u]Hopefully[/u] we subsequently read that search engine information from Google, Bing, etc., is way out of date, due to the fact that with CLL being a chronic disease, the relatively long survival times with this
Many of us were shocked after our CLL/SLL diagnosis when we googled for survival times. [u]Hopefully[/u] we subsequently read that search engine information from Google, Bing, etc., is way out of date, due to the fact that with CLL being a chronic disease, the relatively long survival times with this
AussieNeil
Partner
in
CLL Support
3 months ago
life insurance whilst waiting for official diagnosis
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or myelofibrosis . I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or myelofibrosis . I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
Newbie16
in
MPN Voice
8 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
3 months ago
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