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School experiences of teenagers living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Another interesting dissertation: Lewis, M. L. (2022). A narrative inquiry into the school experiences of teenagers living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)(Doctoral dissertation, University of Bristol). https://research-information.bris.ac.uk/ws/portalfiles/portal/
Another interesting dissertation: Lewis, M. L. (2022). A narrative inquiry into the school experiences of teenagers living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)(Doctoral dissertation, University of Bristol). https://research-information.bris.ac.uk/ws/portalfiles/portal/
theia
in
Myalgic Encephalomyelitis Community
1 year ago
CAR-T availability in Australia
can anyone enlighten me on the current status of CAR-T availability for CLL patients in Australia? I’m aware it wasn’t available for CLL after a small trial a couple of years ago but is being used for other types of Blood Cancers. Thank you :)
can anyone enlighten me on the current status of CAR-T availability for CLL patients in Australia? I’m aware it wasn’t available for CLL after a small trial a couple of years ago but is being used for other types of Blood Cancers. Thank you :)
Billarina
in
CLL Support
1 year ago
teeth whitening
good morning everyone I don’t know if anyone on here has had any experience with tooth whitening products, only I’ve seen an advert for a tooth whitening powder which I’m very tempted to try, especially as it’s dentist approved and is peroxide-free. I’m just wondering about the Alendronic Acid I’m
good morning everyone I don’t know if anyone on here has had any experience with tooth whitening products, only I’ve seen an advert for a tooth whitening powder which I’m very tempted to try, especially as it’s dentist approved and is peroxide-free. I’m just wondering about the Alendronic Acid I’m
Doraflora
in
PMRGCAuk
1 year ago
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Overwhelming Fatigue
I ama 62 year old female. I have been on hemodialysis then peritoneal dialysis and back to hemodialysis over the past five years. I felt great for the two years on peritoneal. Was able to work and go about my daily routine. The peritoneal stopped working and I have been back on hemodialysis for about
I ama 62 year old female. I have been on hemodialysis then peritoneal dialysis and back to hemodialysis over the past five years. I felt great for the two years on peritoneal. Was able to work and go about my daily routine. The peritoneal stopped working and I have been back on hemodialysis for about
Frankie24
in
Kidney Dialysis
1 year ago
Research Evaluating Risk of Richter Syndrome
Apologies if this has been posted before, do feel free to delete and re-direct me if so. It is of particular interest to me because my recent experience suggests that the NHS does not test for complex karyotype CLL (using Chromosome Banding Analysis). I know only that I had an aggressive presentation
Apologies if this has been posted before, do feel free to delete and re-direct me if so. It is of particular interest to me because my recent experience suggests that the NHS does not test for complex karyotype CLL (using Chromosome Banding Analysis). I know only that I had an aggressive presentation
jonathan7176
in
CLL Support
1 year ago
Night shift work
Hello. I work evenings on a hospital nursing unit. I am scheduled to work one night every two weeks. I will remain on evenings and do this cross shift in order to cover the short staff on nights. I am on watch and wait, have stage two CLL with enlarged spleen and a large number of B-cell Lymphomas
Hello. I work evenings on a hospital nursing unit. I am scheduled to work one night every two weeks. I will remain on evenings and do this cross shift in order to cover the short staff on nights. I am on watch and wait, have stage two CLL with enlarged spleen and a large number of B-cell Lymphomas
Taza1
in
CLL Support
1 year ago
Fascinating: Development of Venetoclax
For a few years, I've taken a breather from HU while focusing on full life rather than my CLL. I'm stepping up to post a new podcast from Dana Farber Hospital, which I found fascinating. Particularly for those on Venetoclax, or considering the drug, I couldn't resist sharing it. The Season 2 Trailer
For a few years, I've taken a breather from HU while focusing on full life rather than my CLL. I'm stepping up to post a new podcast from Dana Farber Hospital, which I found fascinating. Particularly for those on Venetoclax, or considering the drug, I couldn't resist sharing it. The Season 2 Trailer
starsafta
in
CLL Support
1 year ago
Genomic testing and clinical decision making in CLL from the (European) ERIC 2022 Meeting
Genomic testing and clinical decision making in CLL- These videos are from European CLL experts intended for medical professionals and presented at or connected with the ERIC 2022 Meeting- using Med-Speak. https://www.vjhemonc.com/feature/the-importance-of-genomic-testing-in-cll/ Advances
Genomic testing and clinical decision making in CLL- These videos are from European CLL experts intended for medical professionals and presented at or connected with the ERIC 2022 Meeting- using Med-Speak. https://www.vjhemonc.com/feature/the-importance-of-genomic-testing-in-cll/ Advances
lankisterguy
Volunteer
in
CLL Support
1 year ago
my stomach in spasm since last week loose bowel movements stomach pain leg pain headache. I have a lot of meds buscopan, colofac colpermin?
can someone advise ? Should I stop dairy & alcohol - not easy at Christmas
can someone advise ? Should I stop dairy & alcohol - not easy at Christmas
Portugal64
in
IBS Network
1 year ago
Home dialysis will soon be possible for more kidney patients
Just in time for World Kidney Day, March 9, Israeli company gets FDA nod for game-changing home digital dialysis system. Healthy kidneys automatically filter waste from the blood 24/7. But for millions of people with advanced kidney disease – including about 570,000 Americans — that essential task is
Just in time for World Kidney Day, March 9, Israeli company gets FDA nod for game-changing home digital dialysis system. Healthy kidneys automatically filter waste from the blood 24/7. But for millions of people with advanced kidney disease – including about 570,000 Americans — that essential task is
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
Results on triple combination (A+V+O) for high risk patients -with-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma-cll
The Bottom Line: In this ongoing trial, the triple combination therapy using acalabrutinib, venetoclax, and obinutuzumab is highly active. Thus far this drug combination has produced durable remissions as a frontline treatment in patients with TP53 mutation CLL and has been generally well tolerated,
The Bottom Line: In this ongoing trial, the triple combination therapy using acalabrutinib, venetoclax, and obinutuzumab is highly active. Thus far this drug combination has produced durable remissions as a frontline treatment in patients with TP53 mutation CLL and has been generally well tolerated,
spi3
in
CLL Support
1 year ago
Interesting article in the news ,NHL diagnosis for military personnel
[i] i thought this was a rather interesting article about the officers working at the Montana nuclear site getting Leukemia . here is a portion of the article ...maybe some of us are more susceptible to the radiation from our xrays and ct scans then others ... ----- "The US military is looking
[i] i thought this was a rather interesting article about the officers working at the Montana nuclear site getting Leukemia . here is a portion of the article ...maybe some of us are more susceptible to the radiation from our xrays and ct scans then others ... ----- "The US military is looking
craterlake
in
CLL Support
1 year ago
Lymphoma & CLL Highlights Virtual Workshop Jan 19, 2023 03:00 PM in London
Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop Time Jan 19, 2023 03:00 PM in London 10:00–13:00 EST/ 15:00–18:00 GMT/ 16:00–19:00 CET The Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop will feature a series of short presentations on lymphoma and chronic lymphocytic leukemia (CLL
Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop Time Jan 19, 2023 03:00 PM in London 10:00–13:00 EST/ 15:00–18:00 GMT/ 16:00–19:00 CET The Post-ASH 2022 Lymphoma & CLL Highlights Virtual Workshop will feature a series of short presentations on lymphoma and chronic lymphocytic leukemia (CLL
lankisterguy
Volunteer
in
CLL Support
1 year ago
Answers Now: Should I Still Watch and Wait?Wednesday, January 25th, 2023 at 3:00pm ET/12:00pm PT
Answers Now: Should I Still Watch and Wait? Wednesday, January 25th, 2023 at 3:00pm ET/12:00pm PT Register here: https://www.patientpower.info/events/answers-now-should-i-still-watch-and-wait Join us Wednesday, January 25, 2023 at 3:00pm ET/12:00pm PT for a live, virtual, chronic lymphocytic leukemia
Answers Now: Should I Still Watch and Wait? Wednesday, January 25th, 2023 at 3:00pm ET/12:00pm PT Register here: https://www.patientpower.info/events/answers-now-should-i-still-watch-and-wait Join us Wednesday, January 25, 2023 at 3:00pm ET/12:00pm PT for a live, virtual, chronic lymphocytic leukemia
lankisterguy
Volunteer
in
CLL Support
1 year ago
ASH 2022 | Key highlights in CLL: clinical trial updates combination therapies novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022
ASH 2022 | Key highlights in CLL: clinical trial updates & the role of combination therapies and novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022 https://www.vjhemonc.com/video/m1hovnhu05w-key-highlights-in-cll-clinical-trial-updates-the-role-of-combination-therapies-and-novel-btkis/ https
ASH 2022 | Key highlights in CLL: clinical trial updates & the role of combination therapies and novel BTKis Lindsey Roeker and Matthew Davids • 10 Dec 2022 https://www.vjhemonc.com/video/m1hovnhu05w-key-highlights-in-cll-clinical-trial-updates-the-role-of-combination-therapies-and-novel-btkis/ https
lankisterguy
Volunteer
in
CLL Support
1 year ago
EXTREME bone pain with Neupogen injections, advise welcome!
Has anyone experienced extreme pain with Neupogen GCSF injections? My husband has received 2 out of 4 injections and is in agonizing bone pain. His specialist recommended a hot bath, Claritin, and Tylenol. I also have a heating pad on his back. Just wondering how long this will last and how he is going
Has anyone experienced extreme pain with Neupogen GCSF injections? My husband has received 2 out of 4 injections and is in agonizing bone pain. His specialist recommended a hot bath, Claritin, and Tylenol. I also have a heating pad on his back. Just wondering how long this will last and how he is going
lisakc1
in
CLL Support
1 year ago
ALC is still going up
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Moonmyst
in
CLL Support
1 year ago
new to bronchiectasis follow up
I had my consultant appointment today with my usual asthma consultant, my first appointment since my ct scan confirmed bronchiectasis with pseudomonas. She says both lungs are affected, the whole of 1 and the top half of the other. I will be starting a 3 month trial of antibiotics, and I am getting a
I had my consultant appointment today with my usual asthma consultant, my first appointment since my ct scan confirmed bronchiectasis with pseudomonas. She says both lungs are affected, the whole of 1 and the top half of the other. I will be starting a 3 month trial of antibiotics, and I am getting a
Emily-G
in
Lung Conditions Community Forum
1 year ago
Exercise is the fountain of youth
I always loved the natural high that exercise brings but I never really knew how totally therapeutic it is. I was always the Captain in Team Sports growing up & just generally active. Things slowed down during college & never got added to my ‘adult’ life of creating a career & family. Anyway, after
I always loved the natural high that exercise brings but I never really knew how totally therapeutic it is. I was always the Captain in Team Sports growing up & just generally active. Things slowed down during college & never got added to my ‘adult’ life of creating a career & family. Anyway, after
CoachVera55
in
CLL Support
1 year ago
Having to start treatment
CLL with no mutations. Numbers are very high and I have no visible symptoms. I'm going to need to start treatment. The two options I am being told are Ibrutinib or Venetoclax. I am a healthy person not overweight I'm on no medication I'm 60 years old are there any thoughts on which medication. And has
CLL with no mutations. Numbers are very high and I have no visible symptoms. I'm going to need to start treatment. The two options I am being told are Ibrutinib or Venetoclax. I am a healthy person not overweight I'm on no medication I'm 60 years old are there any thoughts on which medication. And has
Mog811
in
CLL Support
1 year ago
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