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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
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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
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
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
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
New Treatment Guidelines to Chronic Lymphocytic Leukemia (CLL): Latest advances and emerging treatments.
The Leukemia & Lymphoma Society of Canada recently presented this webinar that I thought was well done and would be of interest to members of this group. To watch the recording of the presentation, follow this link: https://zoom.us/rec/share/n-rsSAwoRlbIj2t2a4IQyN4JKBRAkp1thAGueR0MWS6Vt7lgVFGXpglJ-GyzIyda.H_TslN1eLCB_bs-Y
The Leukemia & Lymphoma Society of Canada recently presented this webinar that I thought was well done and would be of interest to members of this group. To watch the recording of the presentation, follow this link: https://zoom.us/rec/share/n-rsSAwoRlbIj2t2a4IQyN4JKBRAkp1thAGueR0MWS6Vt7lgVFGXpglJ-GyzIyda.H_TslN1eLCB_bs-Y
Northland
in
CLL Support
8 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
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
Anyone turn down a stem cell transplant?
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
LongETinUS
in
MPN Voice
4 months ago
On another subject …
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
lizzziep
in
MPN Voice
4 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
4 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
4 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
4 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
4 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
4 months ago
Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed. In the TRANSFORM-1 trial, the combination of the BCL-XL/BCL-2 inhibitor navitoclax
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed. In the TRANSFORM-1 trial, the combination of the BCL-XL/BCL-2 inhibitor navitoclax
PhysAssist
in
MPN Voice
8 months ago
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