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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
3 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
3 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
3 months ago
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Ruxolitinib is intolerant, what should I do
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
merlisa
in
MPN Voice
8 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
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
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
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
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
4 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
4 months ago
Just diagnosed with 4.0 cm aneurysm of ascending aorta and severe calcification
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Wewo01
in
MPN Voice
8 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
4 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
4 months ago
CLL History
His tireless efforts in advancing the treatment landscape for Chronic
Lymphocytic
Leukemia
(CLL) have left an indelible mark on the medical community and will continue to benefit patients for years to come.
His tireless efforts in advancing the treatment landscape for Chronic
Lymphocytic
Leukemia
(CLL) have left an indelible mark on the medical community and will continue to benefit patients for years to come.
Kwenda
in
CLL Support
1 year ago
Imetelstat Users?
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
TimGS
in
MPN Voice
8 months ago
cancer in blood 6 months after STC
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
PiperAlfie
in
CLL Support
8 months ago
Anyone near Dorking in Surrey who’d like to meet up?
Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the foreseeable future. I’ll have a toehold in Edinburgh , too (long story). I’m being treated at the Royal Marsden Hospital in Sutton (another long story
Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the foreseeable future. I’ll have a toehold in Edinburgh , too (long story). I’m being treated at the Royal Marsden Hospital in Sutton (another long story
Gipsy123
in
MPN Voice
8 months ago
Unmutated patients respond better to Ibrutinib/Venetoclax compared to mutated
https://cllsociety.org/2023/02/ash-2022-dr-talha-munir-on-how-ighv-mutation-status-of-chronic-
lymphocytic
-
leukemia
-cll-affects-response-to-combination-ibrutinib-plus-venetoclax/
https://cllsociety.org/2023/02/ash-2022-dr-talha-munir-on-how-ighv-mutation-status-of-chronic-
lymphocytic
-
leukemia
-cll-affects-response-to-combination-ibrutinib-plus-venetoclax/
Greenbunnies
in
CLL Support
1 year 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
4 months ago
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