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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
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
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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
Ichthyosis
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
Rando21
in
CLL Support
1 year ago
V + O , TP53 and p13
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
skipro
in
CLL Support
1 year ago
Foundation One heme blood test results
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Cusube1967
in
CLL Support
1 year ago
New diagnosis
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
davjb15121
in
CLL Support
1 year ago
The current status and challenges of CAR-T therapy in CLL
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
Jm954
Administrator
in
CLL Support
1 year ago
Switching to home hemodialysis
I have been on peritoneal dialysis using a cycler, which has been wonderful, for two years. Unfortunately my clearance has been falling over the last four months and treatment increase in the amount of dextrose has caused me to gain nearly 30 lb. My clinic has me scheduled to begin training for home
I have been on peritoneal dialysis using a cycler, which has been wonderful, for two years. Unfortunately my clearance has been falling over the last four months and treatment increase in the amount of dextrose has caused me to gain nearly 30 lb. My clinic has me scheduled to begin training for home
platypusak
in
Kidney Dialysis
1 year ago
Elevated creatinine from tacrolimus?
I am 19 months out from my kidney transplant from a deceased donor. Was doing well and my creatinine was actually within the normal range at about a year post transplant. However, since then my creatinine has been creeping up and now is 1.74. Have tried lowering my protein intake, and more hydration
I am 19 months out from my kidney transplant from a deceased donor. Was doing well and my creatinine was actually within the normal range at about a year post transplant. However, since then my creatinine has been creeping up and now is 1.74. Have tried lowering my protein intake, and more hydration
Hawk12
in
Kidney Transplant Patient Support
1 year ago
UK NICE Approves Ibrutinib +Venetoclax for First Line treatment for ALL Patients from today
Probably one of the best news stories that we have been able to announce in many years for patients in England and Wales. We are absolutely delighted that this effective treatment is now available for ALL CLL patients as their first treatment if their doctor feels it is appropriate. This treatment
Probably one of the best news stories that we have been able to announce in many years for patients in England and Wales. We are absolutely delighted that this effective treatment is now available for ALL CLL patients as their first treatment if their doctor feels it is appropriate. This treatment
Jm954
Administrator
in
CLL Support
1 year ago
Relapsed CLL: New Approaches Prolong Survival
Dr Furman says that genetically unstable CLL patients need a combination therapy approach to treatment irrespective of MRD assessment results. This is only a short read and Dr Furman's opinion is always worth taking note of. In case it’s behind a paywall, here is the article in full. Credit to
Dr Furman says that genetically unstable CLL patients need a combination therapy approach to treatment irrespective of MRD assessment results. This is only a short read and Dr Furman's opinion is always worth taking note of. In case it’s behind a paywall, here is the article in full. Credit to
Jm954
Administrator
in
CLL Support
1 year ago
Expression of TCL1A gene is found to drive onset of blood cancer
[i]One of the causes of blood cancer is non-inherited mutations in blood stem cells that can lead to the cancerous growth of abnormal cells. Reporting in Nature, scientists now suggest that targeting a gene called TCL1A may be able to suppress such growth and decrease the risk of blood cancer....[/i]
[i]One of the causes of blood cancer is non-inherited mutations in blood stem cells that can lead to the cancerous growth of abnormal cells. Reporting in Nature, scientists now suggest that targeting a gene called TCL1A may be able to suppress such growth and decrease the risk of blood cancer....[/i]
bennevisplace
in
CLL Support
1 year ago
Spotlight on CLL - Nicole Lamanna, MD Wednesday May 24, 2023 1:00 PM to 2:30 PM EDT- sponsored by LLS- USA but open to all
Unlike other webinars I have posted recently, this should be easy to understand, especially for newly diagnosed and those not familiar with Med-Speak. Dr. Lamanna has a track record of explaining CLL and side effects, with a simple, caring & warm style. - Len - Nicole Lamanna, MD Director, Chronic
Unlike other webinars I have posted recently, this should be easy to understand, especially for newly diagnosed and those not familiar with Med-Speak. Dr. Lamanna has a track record of explaining CLL and side effects, with a simple, caring & warm style. - Len - Nicole Lamanna, MD Director, Chronic
lankisterguy
Volunteer
in
CLL Support
1 year ago
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Open Registration April 27 12:00-1:00PM ET
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Live Simulcast | Register now for this interactive CME/CE/CPE-certified workshop to gain expert insight on current best practices and emerging strategies for advances in chronic lymphocytic leukemia
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Live Simulcast | Register now for this interactive CME/CE/CPE-certified workshop to gain expert insight on current best practices and emerging strategies for advances in chronic lymphocytic leukemia
lankisterguy
Volunteer
in
CLL Support
1 year ago
My chemo experience
I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist was there in minutes, lowered my dose and I was able to complete the course over 6 hours without further adverse effects. Subsequent treatments
I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist was there in minutes, lowered my dose and I was able to complete the course over 6 hours without further adverse effects. Subsequent treatments
kiwiCanuck
in
CLL Support
1 year ago
New and Emerging Treatments for Newly Diagnosed and R/R CLL/SLL: Targeted Inhibitors - Dr. Susan O'Brien
This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL with a focus on targeted inhibitors, presented by Dr. Susan O'Brien is intended for medical professionals and uses moderate "Med-Speak." So only recommended for those accustomed to the medical language. But if you can follow
This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL with a focus on targeted inhibitors, presented by Dr. Susan O'Brien is intended for medical professionals and uses moderate "Med-Speak." So only recommended for those accustomed to the medical language. But if you can follow
lankisterguy
Volunteer
in
CLL Support
1 year ago
10 Year Anniversary
A few weeks ago I realized this is the ten-year anniversary of when I started dialysis. I started in August of 2013 in the days after I had a knee surgery. I was 14 years old. I'm now 24 years old. In the time since I started dialysis I started and finished high school, started and finished college,
A few weeks ago I realized this is the ten-year anniversary of when I started dialysis. I started in August of 2013 in the days after I had a knee surgery. I was 14 years old. I'm now 24 years old. In the time since I started dialysis I started and finished high school, started and finished college,
StormCl0ud
in
Kidney Dialysis
1 year ago
BTK Inhibitor Therapy for CLL: An International Perspective - Stephan Stilgenbauer, MD
BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenbauer, MD Expert Commentary ClinicalThought™ - Targeted therapies, including BTK inhibitors and combinations incorporating BCL-2 inhibitors, have replaced chemoimmunotherapy as the standard of care for treating CLL.
BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenbauer, MD Expert Commentary ClinicalThought™ - Targeted therapies, including BTK inhibitors and combinations incorporating BCL-2 inhibitors, have replaced chemoimmunotherapy as the standard of care for treating CLL.
lankisterguy
Volunteer
in
CLL Support
1 year ago
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