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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
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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
3 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
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
Withdrawal vs Secondary Adrenal Insufficiency
I recently came upon this paper… PredniSONE: Dosage, Mechanism/Onset of Action, Half-Life - Medicine.com Very early on, under the subject absorption it states: “50% to 90% (may be altered in hepatic
failure
,
chronic
renal
failure
, inflammatory bowel disease, hyperthyroidism, and in the elderly) (Frey
I recently came upon this paper… PredniSONE: Dosage, Mechanism/Onset of Action, Half-Life - Medicine.com Very early on, under the subject absorption it states: “50% to 90% (may be altered in hepatic
failure
,
chronic
renal
failure
, inflammatory bowel disease, hyperthyroidism, and in the elderly) (Frey
nuigini
in
PMRGCAuk
7 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
4 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
4 months ago
Heart failure and Entresto anyone?
I have had AFib for 11 years did well on Multaq for the last 7 and all of a sudden it stopped working. Spent 4 days in the hospital and they told me I now have heart failure - cardiologist has recommended a pace and ablate in January and offered me Entresto but I hate to add new meds to my already mix
I have had AFib for 11 years did well on Multaq for the last 7 and all of a sudden it stopped working. Spent 4 days in the hospital and they told me I now have heart failure - cardiologist has recommended a pace and ablate in January and offered me Entresto but I hate to add new meds to my already mix
PamJN
in
Atrial Fibrillation Support
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
4 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
4 months ago
Hello
Hi. So glad for this site. Newly diagnosed with a-fib, along with heart failure (diastolic). Walked into the emergency room here at local hospital Nov. 5th., thinking that I had a possible DVT because of on-going left leg swelling, after blood test and x-rays told I had a-fib which was the reason for
Hi. So glad for this site. Newly diagnosed with a-fib, along with heart failure (diastolic). Walked into the emergency room here at local hospital Nov. 5th., thinking that I had a possible DVT because of on-going left leg swelling, after blood test and x-rays told I had a-fib which was the reason for
gbn_
in
Atrial Fibrillation Support
8 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
4 months ago
heart failure
I am wondering if any of the members in this fine group ended up with heart failure due to AFIB of any kind? If yes , Would you please share how was your AFIB symptoms were leading up to the heart failure diagnosis. Thank you
I am wondering if any of the members in this fine group ended up with heart failure due to AFIB of any kind? If yes , Would you please share how was your AFIB symptoms were leading up to the heart failure diagnosis. Thank you
execz1
in
AF Association
8 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
4 months ago
Lung Transplant appointment 28/11/23 Cancellled for the 2nd time due to Failure of Patient Transport
I was supposed to be having my lung transplant assessment today (28/11) at 2.45 but as before the NWAS didnt turn up. The manager at the Transplant section phoned & told me if I didnt come to the hospital they wouldn't see me. We had to explain we were waiting for the ambulance - he then cancelled the
I was supposed to be having my lung transplant assessment today (28/11) at 2.45 but as before the NWAS didnt turn up. The manager at the Transplant section phoned & told me if I didnt come to the hospital they wouldn't see me. We had to explain we were waiting for the ambulance - he then cancelled the
Sara_2611
in
Lung Conditions Community Forum
8 months ago
Thyroid dysfunction and its role in renal problems
This interesting paper links renal problems to thyroid dysfunction. -->
Thyroid Dysfunction and Renal Function: A Crucial Relationship to Recognize
February 2023
Cureus 15(2):e35242 DOI: 10.7759/cureus.35242
Rania Naguib, Eman Elkemary
[b
This interesting paper links renal problems to thyroid dysfunction. -->
Thyroid Dysfunction and Renal Function: A Crucial Relationship to Recognize
February 2023
Cureus 15(2):e35242 DOI: 10.7759/cureus.35242
Rania Naguib, Eman Elkemary
[b
diogenes
in
Thyroid UK
1 year 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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