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so tired…
Good morning. I was diagnosed in December 2022 with mild CLL. My problem is that I am so tired all the time I just don’t feel myself. But the doctors tell me that I’m fine and that it’s not from the CLL. I looked on the Internet and I saw that fatigue is common in all stages of CLL. Not sure if there
Good morning. I was diagnosed in December 2022 with mild CLL. My problem is that I am so tired all the time I just don’t feel myself. But the doctors tell me that I’m fine and that it’s not from the CLL. I looked on the Internet and I saw that fatigue is common in all stages of CLL. Not sure if there
LG1948
in
CLL Support
10 months ago
Good News Today
I just left my EPS office with good news. I actually thought I was having problems with my new pacemaker but the office it is true. Dr Saini kept raising my ECG print out telling me how wonderful it is and my echo was the same. For all purposes, my heart on there looks the same as anyone with a normal
I just left my EPS office with good news. I actually thought I was having problems with my new pacemaker but the office it is true. Dr Saini kept raising my ECG print out telling me how wonderful it is and my echo was the same. For all purposes, my heart on there looks the same as anyone with a normal
DawnTX
in
AF Association
1 year ago
Relative risk for secondary bone marrow cancer within 5 years after initial CLL chemoimmunotherapy treatment (typically BR or FCR)
In countries where targeted therapies ('brutinibs, venetoclax, obinutuzumab/rituximab) are now available, the remaining reason that FCR (Fludarabine+Cyclophosphamide+Rituximab) is still sometimes recommended for the treatment of CLL is that it can be curative* about 55% of the time - but [u]
only[
In countries where targeted therapies ('brutinibs, venetoclax, obinutuzumab/rituximab) are now available, the remaining reason that FCR (Fludarabine+Cyclophosphamide+Rituximab) is still sometimes recommended for the treatment of CLL is that it can be curative* about 55% of the time - but [u]
only[
AussieNeil
Administrator
in
CLL Support
10 months ago
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Dietary Interventions and CLL - a case report
For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell chronic lymphocytic leukemia with dietary interventions: A personal experience" by Dr. Pooij and his treating hematologist Dr. Raemaekers. The case
For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell chronic lymphocytic leukemia with dietary interventions: A personal experience" by Dr. Pooij and his treating hematologist Dr. Raemaekers. The case
Minou1
in
CLL Support
10 months ago
ECG help
Hi all, First time posting in this forum I have posted in the main BHF a few times. I'm currently waiting for an AF Ablation and recently had my preoperative assessment for it. The nurse kindly gave me a copy of my ECG and naturally I took to googling to try understand it ofcourse getting nowhere 😂
Hi all, First time posting in this forum I have posted in the main BHF a few times. I'm currently waiting for an AF Ablation and recently had my preoperative assessment for it. The nurse kindly gave me a copy of my ECG and naturally I took to googling to try understand it ofcourse getting nowhere 😂
Marvel3000
in
AF Association
1 year ago
Hair texture changes? Hyper or hypo?
What condition(s) makes hair go: a) from wavy/curly to straight? b) darker at the back of your neck? c) grey/blonde -> brazzy/orange? Hyperthyroidism or hypothyroidism? Possibly other conditions?
What condition(s) makes hair go: a) from wavy/curly to straight? b) darker at the back of your neck? c) grey/blonde -> brazzy/orange? Hyperthyroidism or hypothyroidism? Possibly other conditions?
Tomchr
in
Thyroid UK
1 year ago
Heart failure dizziness when standing up or looking up
I'm fine with breathing and moving about but if I've been sat for a while and get up I shake and feel dizzy. never happens when i get out of bed or from the toilet just the sofa.
I'm fine with breathing and moving about but if I've been sat for a while and get up I shake and feel dizzy. never happens when i get out of bed or from the toilet just the sofa.
thelad73
in
AF Association
1 year ago
Psych evaluation
Hi! This is for those of you who are either on the liver transplant list or who have had a transplant. What I'd like to know is whether you were given a psychological evaluation or a one-to-one conversion with a trained therapist as to how to deal with serious organ rejection should it occur.
Hi! This is for those of you who are either on the liver transplant list or who have had a transplant. What I'd like to know is whether you were given a psychological evaluation or a one-to-one conversion with a trained therapist as to how to deal with serious organ rejection should it occur.
Bikafella
in
British Liver Trust
2 years ago
Progress update - Pirtobrutinib triple trial for treatment naive
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
I finished Cycle 4 of the fixed duration Pirtobrutinib combo trial at M.D. Anderson for Pirtobrutinib, Obinutuzumab, and Venetoclax on June 13, 2023. https://clinicaltrials.gov/study/NCT05536349?tab=table In addition to the usual blood tests - CBC, differential, metabolic, electrolyte, and immunoglobulin
SeymourB
in
CLL Support
11 months ago
Living with dialysis
My name is Vicki and I myself have had 2 years of dialysis before I got a kidney transplant . I was very young just 32 with two boys ages 2 and 3 at that time . I received a perfect matching kidney in 1996 and it lasted for 27 years . I am and have been back on hemo-dialysis for another 3 years . I am
My name is Vicki and I myself have had 2 years of dialysis before I got a kidney transplant . I was very young just 32 with two boys ages 2 and 3 at that time . I received a perfect matching kidney in 1996 and it lasted for 27 years . I am and have been back on hemo-dialysis for another 3 years . I am
bubbaboo2
in
Kidney Dialysis
2 years ago
CLL and Hyperthroid
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
I was treated for CLL in 2018 - chlorambucil and Gazyvaro. No problems at all until last month a random blood test indicated an over active thyroid, for which I am now taking medication. I understand that both conditions relate to the immune system. I will see an endocrinologist in 3 months to check
Hidden
in
CLL Support
11 months ago
Bone Pain
I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time along with a few other issues. Now, I am having bone pain in my rib cage. It’s in my lower center ribs and along the edges of the bottom of my ribs but hurting worse on each of my sides and center bottom of my ribs. has anyone
I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time along with a few other issues. Now, I am having bone pain in my rib cage. It’s in my lower center ribs and along the edges of the bottom of my ribs but hurting worse on each of my sides and center bottom of my ribs. has anyone
Willowbug
in
CLL Support
11 months ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
in
CLL Support
11 months ago
mood and cll
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Gardengirl44
in
CLL Support
11 months ago
Calquence / acalabrutinib and Brukinsa / zanubrutinib Adverse Event Comparison for Chronic Lymphocytic Leukaemia / CLL from clinical trials
Now that we have a growing choice of BTK inhibitor treatment options, naturally the question is which one is better? Based on this meta-analysis study of the incidence of 84 Adverse Events (AEs) reported in 61 clinical trials involving nearly 7,000 patients, that question should be better framed as
Now that we have a growing choice of BTK inhibitor treatment options, naturally the question is which one is better? Based on this meta-analysis study of the incidence of 84 Adverse Events (AEs) reported in 61 clinical trials involving nearly 7,000 patients, that question should be better framed as
AussieNeil
Administrator
in
CLL Support
11 months ago
Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: Replay
Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: REPLAY below https://youtu.be/E1sc_YT4u_g - [i]Each person who is diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL/SLL) has a unique set of genetic biomarkers
Understanding How Biomarkers Help Guide Treatment Decisions for Those with CLL/SLL CLL Society Education On-Demand: REPLAY below https://youtu.be/E1sc_YT4u_g - [i]Each person who is diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL/SLL) has a unique set of genetic biomarkers
lankisterguy
Volunteer
in
CLL Support
11 months ago
Anoro
A few weeks ago I had a text to arrange my annual COPD review. This is normally with the practice nurse who can prescribe medications too. I was surprised to be given a Doctor appointment. I am mild COPD and was taking Salmeterol and Carbocisteine. It seemed quite effective. The doctor advised that I
A few weeks ago I had a text to arrange my annual COPD review. This is normally with the practice nurse who can prescribe medications too. I was surprised to be given a Doctor appointment. I am mild COPD and was taking Salmeterol and Carbocisteine. It seemed quite effective. The doctor advised that I
kc110
in
Lung Conditions Community Forum
6 months ago
My First Pacemaker Followup
Today was my first real follow up with my EP since the fitting of my pacemaker and AV node ablation done on February 13 and 27th. I have not been feeling 100% although much much better than before all of this. I guess I expected more not realizing other things are in play with me and it’s not just
Today was my first real follow up with my EP since the fitting of my pacemaker and AV node ablation done on February 13 and 27th. I have not been feeling 100% although much much better than before all of this. I guess I expected more not realizing other things are in play with me and it’s not just
DawnTX
in
AF Association
1 year ago
Hypogonadal - 4 months Orgovyxx- 1 year later- No recovery to baseline 286 only at 98- No libido- TRT?
Gleason 7 4-3..IMRT 20 txs finished 2/28 No after effects went fine except for 4 months adt (orgovyxx) ..still little recovery (T-98) 1 year after ending adt 5/23 recovery only to 98 in one year , baseline before adt 286 with everything working fine. Stopped 5/23 Orgovyxx Still Hypogonadal ( T-98) 1
Gleason 7 4-3..IMRT 20 txs finished 2/28 No after effects went fine except for 4 months adt (orgovyxx) ..still little recovery (T-98) 1 year after ending adt 5/23 recovery only to 98 in one year , baseline before adt 286 with everything working fine. Stopped 5/23 Orgovyxx Still Hypogonadal ( T-98) 1
JWS13
in
Advanced Prostate Cancer
3 days ago
Very very low rising HCG.. unsure what to do
It is pretty much non-viable at this stage.. HCG levels at 10dpt - 42 / 14dpt - 57 / 18dpt - 69 The EPU are asking me to wait 2 weeks to take another HPT; has anyone had similar experiences and if so, what were the options? Thanks.
It is pretty much non-viable at this stage.. HCG levels at 10dpt - 42 / 14dpt - 57 / 18dpt - 69 The EPU are asking me to wait 2 weeks to take another HPT; has anyone had similar experiences and if so, what were the options? Thanks.
VeeVee_bb
in
Fertility Network UK
7 days ago
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