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Passing it on.
I was wondering if leukaemia can be hereditary. I was diagnosed with CLL 3 years ago, my wife died from AML and the thought of my children being susceptible crossed my mind. I did ask Doctor Google the question but it seems the jury is out on that subject.
I was wondering if leukaemia can be hereditary. I was diagnosed with CLL 3 years ago, my wife died from AML and the thought of my children being susceptible crossed my mind. I did ask Doctor Google the question but it seems the jury is out on that subject.
Bigglesworth
in
CLL Support
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
2 years 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
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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
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
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
Administrator
in
CLL Support
2 years 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
in
Leukaemia Support
2 years 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
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 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
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
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
CLL testing
hi relatively new in here. I cannot see a pinned post on this subject but apologies if i missed it. i am on watch and wait and next check up isnt till December. I have read posts about deletions and mutations and how it influences long term prognosis re future treatment, aggressiveness and mutations
hi relatively new in here. I cannot see a pinned post on this subject but apologies if i missed it. i am on watch and wait and next check up isnt till December. I have read posts about deletions and mutations and how it influences long term prognosis re future treatment, aggressiveness and mutations
Saju21
in
CLL Support
2 years ago
Fred Hutchinson Cancer Center receives $710.5 million gift to accelerate cancer and infectious disease research.
This gift will enable Fred Hutch to recruit about 36 new researchers from a variety of scientific areas, including early- and mid-career researchers and senior scientists. The funding includes resources for lab space, equipment, and technology for Fred Hutch’s collaborative research environment. https
This gift will enable Fred Hutch to recruit about 36 new researchers from a variety of scientific areas, including early- and mid-career researchers and senior scientists. The funding includes resources for lab space, equipment, and technology for Fred Hutch’s collaborative research environment. https
gardening-girl
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
Ruxolitinib update.
Two weeks today I started Ruxolitinib. Within day two, my back pain by my ribs went, spleen pain is easing, day sweats have gone, night sweat are wasting too. Bone ache, what bone ache. I feel good. I am 100% better than I was months ago. I get a heavy headache (not pain) now and then. I take
Two weeks today I started Ruxolitinib. Within day two, my back pain by my ribs went, spleen pain is easing, day sweats have gone, night sweat are wasting too. Bone ache, what bone ache. I feel good. I am 100% better than I was months ago. I get a heavy headache (not pain) now and then. I take
wendycu
in
MPN Voice
2 years ago
Dx of ET vs PV
Some of this is likely redundant, but we have many posts on this subject and plenty of curiosity. Here is a bit more, as always no single report is the last word: The most interesting finding is that RBC, a measure we all get in our CBC, FBC, can distinguish Jak2 ET and PV when marrow points to an
Some of this is likely redundant, but we have many posts on this subject and plenty of curiosity. Here is a bit more, as always no single report is the last word: The most interesting finding is that RBC, a measure we all get in our CBC, FBC, can distinguish Jak2 ET and PV when marrow points to an
EPguy
in
MPN Voice
2 years ago
RISK OF DYING OF COVID DURING THIS OMICRON PHASE
Hi, Covid Mortality Rates, I am wondering about the reality. I've read everything from 33% - 89% until Omicron. I've read 2% in a recent publication from Denmark during their Omicron phase, and most of those deaths were in age > than 71, with many other serious morbidities. Half of those dying
Hi, Covid Mortality Rates, I am wondering about the reality. I've read everything from 33% - 89% until Omicron. I've read 2% in a recent publication from Denmark during their Omicron phase, and most of those deaths were in age > than 71, with many other serious morbidities. Half of those dying
skipro
in
CLL Support
2 years ago
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