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Lymphocytic leukemia
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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
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
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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
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
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
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
4 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
4 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
5 months ago
besremi or jakafi
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
Laluna5683
in
MPN Voice
9 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
5 months ago
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 months ago
Post PV Myelofibrosis - One Year Update
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
marlenablue
in
MPN Voice
9 months ago
Rate of Decrease in RBC Count
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
hsdale3
in
MPN Voice
9 months 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
5 months 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
5 months ago
Moving toward disease modification in polycythemia vera
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
Manouche
in
MPN Voice
9 months ago
Canadian SCIG and IVIG study
The most common indication was chronic
lymphocytic
leukemia
(CLL) (N = 52). IgRT reduced the average annual number of infections by 82.6%, emergency room (ER) visits by 84.6%, and hospitalizations by 83.3%. Overall, 84.6% of patients reported their health as better compared to before IgRT.
The most common indication was chronic
lymphocytic
leukemia
(CLL) (N = 52). IgRT reduced the average annual number of infections by 82.6%, emergency room (ER) visits by 84.6%, and hospitalizations by 83.3%. Overall, 84.6% of patients reported their health as better compared to before IgRT.
SeymourB
in
CLL Support
9 months ago
Modbury123
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Modbury123
in
MPN Voice
9 months 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
5 months ago
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