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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
Subsequent to previous posts
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
JHutton1994
in
Lung Conditions Community Forum
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
2 months ago
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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
2 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
2 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
2 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
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
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
2 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
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
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