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New to this and very afraid
Hello folks...My GP feels my bloods indicate CLL...PANIC. Referring me to a Haematology Doctor 58 with dependent kids and mortgage Any information re the below would be great. Immunophenotyping PB has been done with Tcell Tcell helper cells and cytoxiccell all low.. L22 L14 L7 B cells High 64 66
Hello folks...My GP feels my bloods indicate CLL...PANIC. Referring me to a Haematology Doctor 58 with dependent kids and mortgage Any information re the below would be great. Immunophenotyping PB has been done with Tcell Tcell helper cells and cytoxiccell all low.. L22 L14 L7 B cells High 64 66
Stew64
in
CLL Support
1 year ago
My MD Anderson doctor is leaving
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
Lisa-1959
in
CLL Support
1 year ago
Webinar 3.30pm on Thursday - What can help when talking to others about your diagnosis? - Particularly relevant today during the COVID era.
Panel: Jamie Woods acute
leukaemia
patient Margaret Miller chronic lymphocytic
leukaemia
patient Caroline Kerr, Clinical Nurse Specialist for
Leukaemia
& MPN at Belfast City Hospital, Belfast Health and Social Care Trust Catherine Langton, Myeloid Specialist Nurse at Leeds Teaching Hospitals NHS
Panel: Jamie Woods acute
leukaemia
patient Margaret Miller chronic lymphocytic
leukaemia
patient Caroline Kerr, Clinical Nurse Specialist for
Leukaemia
& MPN at Belfast City Hospital, Belfast Health and Social Care Trust Catherine Langton, Myeloid Specialist Nurse at Leeds Teaching Hospitals NHS
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
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Can Hydrea Resolve (fix) Marrow?
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
EPguy
in
MPN Voice
2 years ago
MF and Fedratinib
I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully but my already large spleen is growing again so my consultant has decided to switch me over to Fedratinib. I am grateful that there is an option
I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully but my already large spleen is growing again so my consultant has decided to switch me over to Fedratinib. I am grateful that there is an option
Bullace
in
MPN Voice
2 years ago
Our 2022 Christmas Donations Appeal Will you help us to reach and support more CLL patients this Christmas?
This year has been another difficult year for everyone, especially for the vulnerable and the charities that support them, like CLL Support UK, the charity of which HealthUnlocked CLL Support is the online support presence.
We know that this
Christmas
may be more relaxed than the last
This year has been another difficult year for everyone, especially for the vulnerable and the charities that support them, like CLL Support UK, the charity of which HealthUnlocked CLL Support is the online support presence.
We know that this
Christmas
may be more relaxed than the last
AussieNeil
Administrator
in
CLL Support
1 year ago
How IFN targets Jak2 mutation
A fairly recent report discusses how IFN works against the mutation. I posted in a thread, but seems worth a top post. It's complex stuff but seems consistent. -In sum, it seems IFN forces damage to otherwise hidden Jak2's by stirring things up, but mutant ones fail faster once stirred. -- https
A fairly recent report discusses how IFN works against the mutation. I posted in a thread, but seems worth a top post. It's complex stuff but seems consistent. -In sum, it seems IFN forces damage to otherwise hidden Jak2's by stirring things up, but mutant ones fail faster once stirred. -- https
EPguy
in
MPN Voice
2 years ago
Celebrating -nasties have gone!
After several weeks of strong antibiotics, told pseudomonas etc has gone, no further action, three cheers! Now I have to get over tiredness caused by them, and hopefully go out in Jag when feel ok. Yes Jag has replacement seat belt lock, passed its MOT. Now going to Nebulise, always things to keep
After several weeks of strong antibiotics, told pseudomonas etc has gone, no further action, three cheers! Now I have to get over tiredness caused by them, and hopefully go out in Jag when feel ok. Yes Jag has replacement seat belt lock, passed its MOT. Now going to Nebulise, always things to keep
Morrison10
in
Lung Conditions Community Forum
2 years ago
test interpretation
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
DianeSH
in
CLL Support
1 year ago
A diet for CLL
Dear friends, I hope you are staying well. Last week I ate fruit with vitamine C, I exagerated with quantity and felt really bad. My lymph nodes were swallen and I felt very big fatigue. I m still on watch and wait (I was diagnosed with Cll in January 2018) and I wish to stay on it as long
Dear friends, I hope you are staying well. Last week I ate fruit with vitamine C, I exagerated with quantity and felt really bad. My lymph nodes were swallen and I felt very big fatigue. I m still on watch and wait (I was diagnosed with Cll in January 2018) and I wish to stay on it as long
Lela1212
in
CLL Support
1 year ago
Request - Reco for excellent haematologists in Portugal
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also request for the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also request for the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
MPN Voice
2 years ago
Results from Phase 2 study of nivolumab plus ibrutinib in patients with diffuse large b-cell Richter Transformation of CLL
A research article that reports on "[i]A Phase 2 Study of Nivolumab Combined with Ibrutinib in Patients with Diffuse Large B-cell Richter Transformation of CLL[/i]" was published in the journal Blood Advances this week and provides some encouraging data for a population that is very challenging to treat
A research article that reports on "[i]A Phase 2 Study of Nivolumab Combined with Ibrutinib in Patients with Diffuse Large B-cell Richter Transformation of CLL[/i]" was published in the journal Blood Advances this week and provides some encouraging data for a population that is very challenging to treat
CLLerinOz
Volunteer
in
CLL Support
1 year ago
Essential Thrombocythaemia
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are Hydroxycarbamide and Pegasys. I would like to ask if anyone else has the same condition and if they are taking one of the mentioned drugs and if so how do you find
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are Hydroxycarbamide and Pegasys. I would like to ask if anyone else has the same condition and if they are taking one of the mentioned drugs and if so how do you find
Snowking
in
Leukaemia CARE
2 years ago
essential thrombocytosis or mf
not sure if my et is progressing to mf, Hb 112,normal mcv ,wbc 5 .2,neutrophils 3.6,platelets 352,eGfr 88,lft normal, ldh595.mild splenomegaly at 13.7. medication is aspirin,symtoms are fatigue, dry mouth,frequent urinating and of course anxiety. Does anyone think i should be on some treatment Thank
not sure if my et is progressing to mf, Hb 112,normal mcv ,wbc 5 .2,neutrophils 3.6,platelets 352,eGfr 88,lft normal, ldh595.mild splenomegaly at 13.7. medication is aspirin,symtoms are fatigue, dry mouth,frequent urinating and of course anxiety. Does anyone think i should be on some treatment Thank
glyndale
in
MPN Voice
2 years ago
Richter transformation of chronic lymphocytic leukaemia: a British Society for Haematology Good Practice Paper
Richter's - we all dread that word and try not to think about it but if the worst does happen then it's good to be well informed, preferably beforehand. This short paper from the British Society for Haematology was written by the leading CLL/Richter's doctors in the UK and sets out best practice for
Richter's - we all dread that word and try not to think about it but if the worst does happen then it's good to be well informed, preferably beforehand. This short paper from the British Society for Haematology was written by the leading CLL/Richter's doctors in the UK and sets out best practice for
Jm954
Administrator
in
CLL Support
2 years ago
Five-year results for the iFCG regimen: first-line treatment of CLL patients with mutated IGHV and without del(17p)/TP53 mutation
Published 4 months ago, https://journals.lww.com/hemasphere/Fulltext/2022/06003/S149__LONG_TERM_OUTCOMES_OF_IFCG_REGIMEN_FOR.50.aspx is an update of the Phase 2 study S149, initiated in 2017 and previously reported here in "Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place" https
Published 4 months ago, https://journals.lww.com/hemasphere/Fulltext/2022/06003/S149__LONG_TERM_OUTCOMES_OF_IFCG_REGIMEN_FOR.50.aspx is an update of the Phase 2 study S149, initiated in 2017 and previously reported here in "Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place" https
bennevisplace
in
CLL Support
2 years ago
PV patients and Common Variable Immune Deficiency Adult Onset
I have been a PV patient since 2012 and on Ruxolitinib 20mg 2xday since 2017. In the past two years my IG's have begun to fall as have my B cells and T cells. My oncologist referred me to Immunology. After several subset blood tests, they have determined that my immune system is failing and I have
I have been a PV patient since 2012 and on Ruxolitinib 20mg 2xday since 2017. In the past two years my IG's have begun to fall as have my B cells and T cells. My oncologist referred me to Immunology. After several subset blood tests, they have determined that my immune system is failing and I have
Psteuer
in
MPN Voice
2 years ago
green tea
I was told to drink lots of green tea when I was first diagnosed with CLL 9 months ago.But it seems like my spleen hurts more when I drink a cup of green tea or take a green tea capsule. Am I missing something?
I was told to drink lots of green tea when I was first diagnosed with CLL 9 months ago.But it seems like my spleen hurts more when I drink a cup of green tea or take a green tea capsule. Am I missing something?
Nugent666
in
CLL Support
2 years ago
Oncology Learning Network CME- Emerging Treatments for CLL / SLL included in NCCN and ESMO guidelines
This video and most on the Oncology Learning Network CME are intended for trained medical professionals, but those comfortable with MedSpeak can sign up for an account to view this excellent presentation by Dr. Nicole Lamanna of Columbia NY Presbyterian here: https://hmpeducation.com/content/access-webcast
This video and most on the Oncology Learning Network CME are intended for trained medical professionals, but those comfortable with MedSpeak can sign up for an account to view this excellent presentation by Dr. Nicole Lamanna of Columbia NY Presbyterian here: https://hmpeducation.com/content/access-webcast
lankisterguy
Volunteer
in
CLL Support
2 years ago
Patient Power CLL & Fatigue 2022-10-19.
Fatigue is a side effect shared by just about every patient with chronic lymphocytic leukemia (CLL). In this replay of a recent CLL Answers Now program, CLL patient and host Brad Adams and Carmelita Escalante, MD, from the Cancer-Related Fatigue Clinic at the University of Texas MD Anderson Cancer Center
Fatigue is a side effect shared by just about every patient with chronic lymphocytic leukemia (CLL). In this replay of a recent CLL Answers Now program, CLL patient and host Brad Adams and Carmelita Escalante, MD, from the Cancer-Related Fatigue Clinic at the University of Texas MD Anderson Cancer Center
lankisterguy
Volunteer
in
CLL Support
2 years ago
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