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Dialysis / RLS
Wow, this sub is a lot more active than the Kidney Disease sub, one would think it would be the other way around. I guess RLS is a lot more prevalent than people think? I never experienced or even heard of RLS before starting dialysis but boy did it hit me hard. It's already hard to sleep while doing
Wow, this sub is a lot more active than the Kidney Disease sub, one would think it would be the other way around. I guess RLS is a lot more prevalent than people think? I never experienced or even heard of RLS before starting dialysis but boy did it hit me hard. It's already hard to sleep while doing
bumblebee_tuna
in
Restless Legs Syndrome
10 months 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
1 year ago
Stage 5 Chronic Kidney Disease (CKD)
Dialysis and kidney transplant are the only two treatments for people with kidney failure. It is also important for patients to continue managing any other health conditions they may have, including high blood pressure and/or diabetes. Learn more at: https://www.kidney.org/atoz/content/stage-5-chronic-kidney-disease-ckd
Dialysis and kidney transplant are the only two treatments for people with kidney failure. It is also important for patients to continue managing any other health conditions they may have, including high blood pressure and/or diabetes. Learn more at: https://www.kidney.org/atoz/content/stage-5-chronic-kidney-disease-ckd
JackieJ_NKF
Partner
in
Kidney Dialysis
10 months ago
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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
1 year 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
7 months ago
Transplant.vs dialysis
Hi. I am going through the process for a kidney transplant. I had my first appointment with the transplant deans was supposed by what he was saying. I felt like he was trying to talk me ougetting a transplant. He told me there was no guarantee a transplant would improve my life more than dialysis.
Hi. I am going through the process for a kidney transplant. I had my first appointment with the transplant deans was supposed by what he was saying. I felt like he was trying to talk me ougetting a transplant. He told me there was no guarantee a transplant would improve my life more than dialysis.
Jade1982
in
Kidney Transplant Patient Support
10 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
1 year ago
mannitol challenge test
has anyone had mannitol challenge test an didn't need to stop montelukast? Was your test positive (you had your asthma confirmed)?
has anyone had mannitol challenge test an didn't need to stop montelukast? Was your test positive (you had your asthma confirmed)?
sciencepotato
in
Lung Conditions Community Forum
8 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
1 year ago
pd dialysis and swimming ?
last week it was so hot here I wanted to get in a pool so bad. But I’m extra careful with my exit site . But I read stories where people say they swim in the salt water ocean or a pool . And had no problems. I am wanting to hear from any of you who have gone swimming have you gone in an ocean or a
last week it was so hot here I wanted to get in a pool so bad. But I’m extra careful with my exit site . But I read stories where people say they swim in the salt water ocean or a pool . And had no problems. I am wanting to hear from any of you who have gone swimming have you gone in an ocean or a
Beachgirl32
in
Kidney Dialysis
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
1 year 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
Partner
in
CLL Support
1 year ago
I just want to talk ..
I am finally posting excuse my poor English it’s not my native language I have been diagnosed with CKD by a coincidencewhen I tested my blood and urin for a routine test befor college, the protein in urine was elevated and after several months I had to do my pre surgery checkups and they found my
I am finally posting excuse my poor English it’s not my native language I have been diagnosed with CKD by a coincidencewhen I tested my blood and urin for a routine test befor college, the protein in urine was elevated and after several months I had to do my pre surgery checkups and they found my
Asmot
in
Kidney Dialysis
11 months ago
Turmeric ginger and black pepper
Anyone taken this as a capsule or the natural ingredients I've read quite a bit about these ingredients and they seem to possibly help with copd symptoms. Could anyone enlighten me whether its worth buying the manufactured capsules please ? X
Anyone taken this as a capsule or the natural ingredients I've read quite a bit about these ingredients and they seem to possibly help with copd symptoms. Could anyone enlighten me whether its worth buying the manufactured capsules please ? X
soulboy118
in
COPD Friends
8 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
1 year ago
Looking for guidance on RLS and Parkinson's Management
Good Morning, Read this forum regularly... thank you for sharing ... Looking to learn more about RLS and Parkinson's, especially from persons with these two conditions particularly their medication management. My husband has both conditions, RLS since mid 2000s, Parkinson's since 2018. And we are
Good Morning, Read this forum regularly... thank you for sharing ... Looking to learn more about RLS and Parkinson's, especially from persons with these two conditions particularly their medication management. My husband has both conditions, RLS since mid 2000s, Parkinson's since 2018. And we are
gardening57
in
Restless Legs Syndrome
1 year ago
IBS Colitis or what?
After 5 days, they did a colonoscopy, no
polyps
, pathology said
colonic
mucosa with ischemic type mucosal colitis.
After 5 days, they did a colonoscopy, no
polyps
, pathology said
colonic
mucosa with ischemic type mucosal colitis.
Scat319
in
IBS Network
11 months ago
Hard Mass on my Spleen
My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help is life-changing for many people. I'm a 68 year old guy who was diagnosed with cll in 2014. My wbc's have been fairly stable since diagnosis
My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help is life-changing for many people. I'm a 68 year old guy who was diagnosed with cll in 2014. My wbc's have been fairly stable since diagnosis
Gooseman
in
CLL Support
1 year ago
HU and prefibrotic myelofibrosis
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
CLL Support
1 year ago
Hubby is in remission but still needs to take his A&V for an additional 8.5months.
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
spi3
in
CLL Support
1 year ago
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