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Just Want to Cry!
On Saturday I went to collect my meds from the pharmacy. It's not too far to walk so I took my dog. We walked in a different direction which was exciting because there were more sniffs and lamp posts to wee on (him, not me 😂) and it was breezy, which caused much cavorting ( him, not me 😂) On the way
On Saturday I went to collect my meds from the pharmacy. It's not too far to walk so I took my dog. We walked in a different direction which was exciting because there were more sniffs and lamp posts to wee on (him, not me 😂) and it was breezy, which caused much cavorting ( him, not me 😂) On the way
Lupiknits
in
LUPUS UK
7 years ago
Year after CLL diagnosis~
After a yr of this CLL diagnosis I am still frustrated with the "wait and see" approach. I understand for older patients waiting but I am 54 and have been an active horseback rider my whole life. Now I have fatigue, muscle and joint pain, which the drs say is not specifically related to CLL. My lumph
After a yr of this CLL diagnosis I am still frustrated with the "wait and see" approach. I understand for older patients waiting but I am 54 and have been an active horseback rider my whole life. Now I have fatigue, muscle and joint pain, which the drs say is not specifically related to CLL. My lumph
Nettiehudson
in
CLL Support
7 years ago
Research survey on CLL/SLL
Hi We are doing some research in follow up to our abstract from ASH 2016 and would appreciate your help. Participate in an important Survey for Patients with CLL/SLL • Have you been diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma? • Do you reside in the United States? If the
Hi We are doing some research in follow up to our abstract from ASH 2016 and would appreciate your help. Participate in an important Survey for Patients with CLL/SLL • Have you been diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma? • Do you reside in the United States? If the
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
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Radiation as sll treatment
Hello! I saw my cll specialist for the first time today and since I have sll (p17 del) in the early stages he is referring me to a radiation oncologist for a consult. Has anyone done radiation on sll? The cancer is in my inguinal (groin) nodes on both sides and not detectable anywhere else including
Hello! I saw my cll specialist for the first time today and since I have sll (p17 del) in the early stages he is referring me to a radiation oncologist for a consult. Has anyone done radiation on sll? The cancer is in my inguinal (groin) nodes on both sides and not detectable anywhere else including
Lrd38
in
CLL Support
7 years ago
Cll I just got diagnosed with cll my white blood count is 20,000
I have been diagnosed with cll my white blood cell count is 20,000 no other symptoms I feel fine
I have been diagnosed with cll my white blood cell count is 20,000 no other symptoms I feel fine
Pinafi
in
CLL Support
7 years ago
flu jab
I had a I had a flu jab last Saturday and last night I have a terrible night's sleep and now I have flu! I have myelofibrosis and I spoke to my blood nurses I call him and he hadn't heard of the problem, I take 10mg of Jacobi or ruxolitinib each day and I'm wondering if anybody else has the symptoms
I had a I had a flu jab last Saturday and last night I have a terrible night's sleep and now I have flu! I have myelofibrosis and I spoke to my blood nurses I call him and he hadn't heard of the problem, I take 10mg of Jacobi or ruxolitinib each day and I'm wondering if anybody else has the symptoms
MichaelS
in
MPN Voice
7 years ago
Raising levels of LDH in CLL
Hi, long time since last post. My mother seems to be doing well on Ibrutinib. She is 17p deletion and trysome 12, her levels of WBC were from 130 when started treatment to 16 in 4 months, but we have a concern about her LDH that has been raising from 350 to 450 and now she is 530 during the last 3 months
Hi, long time since last post. My mother seems to be doing well on Ibrutinib. She is 17p deletion and trysome 12, her levels of WBC were from 130 when started treatment to 16 in 4 months, but we have a concern about her LDH that has been raising from 350 to 450 and now she is 530 during the last 3 months
nicolas_12
in
CLL Support
7 years ago
Upcoming Post ASH CLL Society Patient and Caregiver Educational Forums Dec. 16 in Seattle and Bethesda
Hi, ASH is the most important hematology conference and this year there is sure to be clinically relevant news for those of us with CLL. To learn the latest (and the basics too), please join me in Seattle right after ASH with Dr. Pagel and strong team from Swedish Ho. and the Hutch on Dec. 16. The same
Hi, ASH is the most important hematology conference and this year there is sure to be clinically relevant news for those of us with CLL. To learn the latest (and the basics too), please join me in Seattle right after ASH with Dr. Pagel and strong team from Swedish Ho. and the Hutch on Dec. 16. The same
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
Royal College of General Practitioners Annual Conference session discusses on-line empowerment, HU use and patient/doctor communication
Sorry for the blurred images, these are taken from a session yesterday at the RCGP annual conference. interestingly HealthUnlocked use was a case study example of how modern on-line patients become empowered. The session was quite uplifting, it was full, and speakers where discussing patient doctor
Sorry for the blurred images, these are taken from a session yesterday at the RCGP annual conference. interestingly HealthUnlocked use was a case study example of how modern on-line patients become empowered. The session was quite uplifting, it was full, and speakers where discussing patient doctor
HAIRBEAR_UK
in
Leukaemia Support
7 years ago
Royal College of General Practitioners Annual Conference session discusses on-line empowerment, HU use and patient/doctor communication
Sorry for the blurred images, these are taken from a session yesterday at the RCGP annual conference. interestingly HealthUnlocked use was a case study example of how modern on-line patients become empowered. The session was quite uplifting, it was full, and speakers where discussing patient doctor
Sorry for the blurred images, these are taken from a session yesterday at the RCGP annual conference. interestingly HealthUnlocked use was a case study example of how modern on-line patients become empowered. The session was quite uplifting, it was full, and speakers where discussing patient doctor
HAIRBEAR_UK
Administrator
in
CLL Support
7 years ago
GVHD after a stem cell transplant
I had a stem cell transplant from a non-related donor almost four months ago and got graft versus host disease a couple of weeks or so later. It isn't getting any better despite several months of steroids and being on a trial of rixulitimab (spelling alert). It's in my liver and causing a spotty rash
I had a stem cell transplant from a non-related donor almost four months ago and got graft versus host disease a couple of weeks or so later. It isn't getting any better despite several months of steroids and being on a trial of rixulitimab (spelling alert). It's in my liver and causing a spotty rash
Christian057
in
CLL Support
7 years ago
CLL and Vitamin C
I was thinking of getting some Vitamin C IV and read some posts from a few years ago that said vitamin C might overstimulate lymphocyte production. Now I'm second guessing myself. I found this article but it's a little over my head in terms of the science. Can anyone decipher it for me in simpler
I was thinking of getting some Vitamin C IV and read some posts from a few years ago that said vitamin C might overstimulate lymphocyte production. Now I'm second guessing myself. I found this article but it's a little over my head in terms of the science. Can anyone decipher it for me in simpler
Elle_V
in
CLL Support
7 years ago
Should men and women be treated differently?
In CLL muated/unmutated is beginning to matter in treatment choice.. but what about the other large component ...sex?? Surely in the fledgling era of personalised medicine this should be looked at? A recent study look at this in DLBCL, think Richter's, and the use of rituxan a component in RCHOP, indicates
In CLL muated/unmutated is beginning to matter in treatment choice.. but what about the other large component ...sex?? Surely in the fledgling era of personalised medicine this should be looked at? A recent study look at this in DLBCL, think Richter's, and the use of rituxan a component in RCHOP, indicates
Cllcanada
Top Poster CURE Hero
in
CLL Support
7 years ago
Quick question
My husband was diagnosed with Myelofibrosis about a year ago and is on Hydro and Ruxolitinib. He has been doing very well on these drugs .At moment he is in hospital with severe diarrhea and really poorly. I am wondering if the drugs could cause this. Hospital just treating with fluids at moment ...
My husband was diagnosed with Myelofibrosis about a year ago and is on Hydro and Ruxolitinib. He has been doing very well on these drugs .At moment he is in hospital with severe diarrhea and really poorly. I am wondering if the drugs could cause this. Hospital just treating with fluids at moment ...
Marianjones54
in
MPN Voice
7 years ago
NICE use the Cancer Drugs Fund to grant access to venetoclax for treating chronic lymphocytic leukaemia patients.
Some good news! Today the National Institute for Health and Care Excellence (NICE) published the Final Appraisal Determination (FAD) recommending venetoclax (Venclyxto) be made available to treat chronic lymphocytic leukaemia. Access has been granted via the Cancer Drugs fund, through a managed access
Some good news! Today the National Institute for Health and Care Excellence (NICE) published the Final Appraisal Determination (FAD) recommending venetoclax (Venclyxto) be made available to treat chronic lymphocytic leukaemia. Access has been granted via the Cancer Drugs fund, through a managed access
HAIRBEAR_UK
in
Leukaemia Support
7 years ago
How private is what you share if you use Microsoft Windows? Dutch DPA states every website visited is tracked with default settings in Edge
[i]After investigating several versions of the OS (including Windows 10 Home and Pro), the Dutch data protection authority (DPA) said today it has identified multiple breaches of data protection law. [/i] [i] “Microsoft does not clearly inform users about the type of data it uses, and for which purpose
[i]After investigating several versions of the OS (including Windows 10 Home and Pro), the Dutch data protection authority (DPA) said today it has identified multiple breaches of data protection law. [/i] [i] “Microsoft does not clearly inform users about the type of data it uses, and for which purpose
AussieNeil
Partner
in
CLL Support
7 years ago
Long term treatment for 11q
As some may know, I am 25 years old diagnosed with CLL 11q deletion. One of my recent consultants has been Dr. Aman at the James Center who works under Dr. Byrd. We had a phone call and he told me, as I've come to expect, that he would treat me with the next 50 years in mind vs. A traditional CLL patient
As some may know, I am 25 years old diagnosed with CLL 11q deletion. One of my recent consultants has been Dr. Aman at the James Center who works under Dr. Byrd. We had a phone call and he told me, as I've come to expect, that he would treat me with the next 50 years in mind vs. A traditional CLL patient
Cpt_N
in
CLL Support
7 years ago
CLL connection with taking Embrel or Humira
I took both of these drugs , not at the same time, prior to my diagnosis in 2014.My oncologist told me there could be a connection, and not to take either of them again. Anybody else have a problem with these drugs? Thanks, Winsey
I took both of these drugs , not at the same time, prior to my diagnosis in 2014.My oncologist told me there could be a connection, and not to take either of them again. Anybody else have a problem with these drugs? Thanks, Winsey
Winsey
in
CLL Support
7 years ago
High biotin doses may interfere with some SERUM blood tests, e.g. thyroid, anaemia. Those on Ibrutinib please note!
Those taking biotin PLEASE take note!
Biotin (vitamin B7) is a common component of immunoassays (a technique for measuring blood serum levels) and a small study has shown an alarming impact on the accuracy of some commonly performed blood tests. [u]Biotin supplements are commonly taken to reduce
Those taking biotin PLEASE take note!
Biotin (vitamin B7) is a common component of immunoassays (a technique for measuring blood serum levels) and a small study has shown an alarming impact on the accuracy of some commonly performed blood tests. [u]Biotin supplements are commonly taken to reduce
AussieNeil
Partner
in
CLL Support
7 years ago
ROR1 Update
Does anyone know if there are any preliminary results from any of the clinical trials involving ROR1? From what I understand, ROR1 is found on 90% or so if CLL and very little on healthy cells. I heard there is an anti-ROR1 medication in at least one clinical trial, and another trial is being planned
Does anyone know if there are any preliminary results from any of the clinical trials involving ROR1? From what I understand, ROR1 is found on 90% or so if CLL and very little on healthy cells. I heard there is an anti-ROR1 medication in at least one clinical trial, and another trial is being planned
DaleFL
in
CLL Support
7 years ago
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