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How to tell young children
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Savage27
in
CLL Support
4 years ago
Anyone know of links between MPN’s and working on military radars?
Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and weren’t related to lifestyle choices. But I had a sudden moment of “what if” whilst at work today. I’ve served over 14 years in the RAF as a comms
Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and weren’t related to lifestyle choices. But I had a sudden moment of “what if” whilst at work today. I’ve served over 14 years in the RAF as a comms
MadamCholet1
in
MPN Voice
4 years ago
On the possible use of mushrooms and natural supplements, and their potential benefits, with citations
The following post provides information and NON-MEDICAL advice I've come across that I'll be presenting to my oncologist tomorrow. I thought it might be of value for others among us to consider, to further research (I provide citations), to comment on, and/or to speak to their doctor(s) and oncologist
The following post provides information and NON-MEDICAL advice I've come across that I'll be presenting to my oncologist tomorrow. I thought it might be of value for others among us to consider, to further research (I provide citations), to comment on, and/or to speak to their doctor(s) and oncologist
Pogee
in
CLL Support
4 years ago
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SF3B1 Mutations
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
Jm954
Administrator
in
CLL Support
4 years ago
FCR oral versus iv
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
CarpeDiem03
in
CLL Support
4 years ago
Worried About Your CLL? A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! (Applies to USA Residents only)
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - We believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - We believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
lankisterguy
Volunteer
in
CLL Support
4 years ago
25 with ET
Hello all, I am new here. I am 25, got diagnosed with ET with JAK2 mutation positive. The funny part is I am doctor myself, just got my general physician degree after 6 years of hard work. Now it is 3 more years to complete the specialty of my choice, then I will be a specialist doctor. So, being from
Hello all, I am new here. I am 25, got diagnosed with ET with JAK2 mutation positive. The funny part is I am doctor myself, just got my general physician degree after 6 years of hard work. Now it is 3 more years to complete the specialty of my choice, then I will be a specialist doctor. So, being from
DoctorWithET
in
MPN Voice
4 years ago
Haematocrit
Hi all I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF Thanks in advance Graham
Hi all I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF Thanks in advance Graham
Graham7694
in
MPN Voice
4 years ago
Painful hands
I have had Lupus SLE for 16 years. My main problems are skin related. At the moment I am not on any medication as all of the ones I have tried ( and there have been many) seem to have unpleasant side effects. My Rhemy now wants me to try Rituximab which I am scared to try but will probably end up having
I have had Lupus SLE for 16 years. My main problems are skin related. At the moment I am not on any medication as all of the ones I have tried ( and there have been many) seem to have unpleasant side effects. My Rhemy now wants me to try Rituximab which I am scared to try but will probably end up having
littlemissp
in
LUPUS UK
4 years ago
Immunophenotyping
Hi, just got my result from immunophenotying said it show classic 5 of 5 for CLL do not know what that means diagnosed with SLL in December 2016. have had doubling of lymphocytes and WBC since March this year and also some night sweat very easily fatigued, should be starting Acalabrutinib shortly seeing
Hi, just got my result from immunophenotying said it show classic 5 of 5 for CLL do not know what that means diagnosed with SLL in December 2016. have had doubling of lymphocytes and WBC since March this year and also some night sweat very easily fatigued, should be starting Acalabrutinib shortly seeing
jaybrjod
in
CLL Support
4 years ago
We are mutating SARS-CoV-2, but it is evolving back.
Scientists investigating the evolution of the virus that causes Covid19 say that its mutation seems to be directed by human proteins that degrade it, but natural selection of the virus enables it to bounce back. The findings could help in the design of vaccines against the virus. All organisms mutate
Scientists investigating the evolution of the virus that causes Covid19 say that its mutation seems to be directed by human proteins that degrade it, but natural selection of the virus enables it to bounce back. The findings could help in the design of vaccines against the virus. All organisms mutate
2greys
in
Lung Conditions Community Forum
4 years ago
COVID-19 vaccine has hefty response in nonhuman primates
A replicating RNA vaccine, formulated with a lipid-based nanoparticle emulsion that goes by the acronym LION, produces antibodies against the COVID-19 coronavirus in mice and primates with a single immunization. These antibodies potently neutralize the virus. The effects occurred within two weeks after
A replicating RNA vaccine, formulated with a lipid-based nanoparticle emulsion that goes by the acronym LION, produces antibodies against the COVID-19 coronavirus in mice and primates with a single immunization. These antibodies potently neutralize the virus. The effects occurred within two weeks after
2greys
in
Lung Conditions Community Forum
4 years ago
Blood results in CBC
Hi All, I wrote two months ago that my blood work had returned to normal after two abnormal and a tentative dx of CLL. Well, this month it is abnormal again. I am so confused. The receptionist said they never diagnose until at least six months of blood results.
Hi All, I wrote two months ago that my blood work had returned to normal after two abnormal and a tentative dx of CLL. Well, this month it is abnormal again. I am so confused. The receptionist said they never diagnose until at least six months of blood results.
gustave
in
CLL Support
4 years ago
Free Prescription home deliveries appear to have been stopped by Boots
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Harvist
in
CLL Support
4 years ago
SLL/CLL Numbers
Thanks for all of you with your previous replies. As you know I have been diagnosed last month with SLL/CLL and now I have all my test results. I hope you can share your experience with similar results to mine and dice me with what to expect: 1) CBC all numbers are within the normal range 2) Flow
Thanks for all of you with your previous replies. As you know I have been diagnosed last month with SLL/CLL and now I have all my test results. I hope you can share your experience with similar results to mine and dice me with what to expect: 1) CBC all numbers are within the normal range 2) Flow
Egypt58
in
CLL Support
4 years ago
Clemastine (Tavegyl), an over-the-counter drug, found to be effective at inducing LMP and cell death
For what it may be worth, thougbt some of you might like to see this: "Lysosomes in chronic lymphocytic leukemia (CLL) cells have previously been identified as a promising target for therapeutic intervention in combination with targeted therapies. Recent studies have shown that antihistamines can induce
For what it may be worth, thougbt some of you might like to see this: "Lysosomes in chronic lymphocytic leukemia (CLL) cells have previously been identified as a promising target for therapeutic intervention in combination with targeted therapies. Recent studies have shown that antihistamines can induce
Pogee
in
CLL Support
4 years ago
T cell leukemia
Just diagnosed with T cell leukemia, I do not have a subtype yet. Any other T cell types out there?
Just diagnosed with T cell leukemia, I do not have a subtype yet. Any other T cell types out there?
Mom-mom-e
in
CLL Support
4 years ago
Imbruvica-related issues: Qs + comments
The following are questions and comments I'll be asking my oncologist when I see him tomorrow. I believe at least some of them might be relevant to what some among us are experiencing and research some of us are engaging in. Clearly, none of the comments here are meant to be authoritative nor intended
The following are questions and comments I'll be asking my oncologist when I see him tomorrow. I believe at least some of them might be relevant to what some among us are experiencing and research some of us are engaging in. Clearly, none of the comments here are meant to be authoritative nor intended
Pogee
in
CLL Support
4 years ago
FCR
I’ll avoid FCR at all. Dangerous and tricky. Increase the probability of AL occurrence as well as second neoplasm and Richter transformation in the long run. You have to be "fit patient” to receive FCR, IGHV mutated and without tp53 mutation or 17p deletion. Find a responsible doctor with a robust experience
I’ll avoid FCR at all. Dangerous and tricky. Increase the probability of AL occurrence as well as second neoplasm and Richter transformation in the long run. You have to be "fit patient” to receive FCR, IGHV mutated and without tp53 mutation or 17p deletion. Find a responsible doctor with a robust experience
Rccfrc00
in
CLL Support
4 years ago
Sweet's syndrome during induction chemotherapy for acute myeloid leukemia – case report and mini review.
In 15-20% of cases, Sweet's syndrome (SS) develops secondary to cancer, the blood cancer,
acute
myeloid
leukaemia
(AML), being the commonest. Out of the total number of malignancy-associated cases, 85% have blood cancer.
In 15-20% of cases, Sweet's syndrome (SS) develops secondary to cancer, the blood cancer,
acute
myeloid
leukaemia
(AML), being the commonest. Out of the total number of malignancy-associated cases, 85% have blood cancer.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
4 years ago
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