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Blood cancer uk explain why some CLLers are finally getting priority PCR tests
There seemed to be a particular problem with people with chronic lymphocytic
leukaemia
(CLL), which was worrying because everyone with CLL should be eligible to be considered for the new treatments. 💬 As people shared their experiences (and thank you to everyone who did so!)
There seemed to be a particular problem with people with chronic lymphocytic
leukaemia
(CLL), which was worrying because everyone with CLL should be eligible to be considered for the new treatments. 💬 As people shared their experiences (and thank you to everyone who did so!)
Bartlet
in
CLL Support
2 years ago
LLS Dr. Greenberger and Dr. Saltzman update on COVID-19 pandemic, the LLS Antibody Research Study, patients responses to the COVID vaccines
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
lankisterguy
Volunteer
in
CLL Support
2 years ago
Webinar - 3.30pm Thursday 10th February - Latest updates on CLL and what this means for you
Advocates Network and
Leukaemia
Care.
Advocates Network and
Leukaemia
Care.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
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Webinar - 3.30pm 8th February - Latest updates on AML and what this means for you
Advocates Network and
Leukaemia
Care.
Advocates Network and
Leukaemia
Care.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Webinar - 6.30pm 8th February - Latest updates on ALL and what this means for you
This is being organised as a collaboration between the Acute
Leukaemia
Advocates Network and
Leukaemia
Care. You can register here: https://us02web.zoom.us/webinar/register/WN_voADau9YRjaWQof0DN8D-Q
This is being organised as a collaboration between the Acute
Leukaemia
Advocates Network and
Leukaemia
Care. You can register here: https://us02web.zoom.us/webinar/register/WN_voADau9YRjaWQof0DN8D-Q
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Please Help with the Global Leukaemia Patient Experience Survey 2021
The CLL Advocates Network (CLLAN) in partnership with Acute Leukemia Advocates Network (ALAN) and the CML Advocates Network (CMLAN) are running a Global Leukemia Patient Experience Survey 2021 to create a global picture of the key issues, experiences and unmet needs of
leukaemia
patients.
The CLL Advocates Network (CLLAN) in partnership with Acute Leukemia Advocates Network (ALAN) and the CML Advocates Network (CMLAN) are running a Global Leukemia Patient Experience Survey 2021 to create a global picture of the key issues, experiences and unmet needs of
leukaemia
patients.
Jm954
Administrator
in
CLL Support
2 years ago
JAKAFI not working
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
william-Indo
in
MPN Voice
2 years ago
One yolk sac, two fetuses. Help please. Anyone has experienced this before?
I’m doing ivf with my beloved husband who sadly RIP in 2020 from
leukaemia
. And having twins pregnancy with potentially significant risk is gonna be too hard for me mentally and physically as a single mom. Please help. Any advice is welcome 🙏
I’m doing ivf with my beloved husband who sadly RIP in 2020 from
leukaemia
. And having twins pregnancy with potentially significant risk is gonna be too hard for me mentally and physically as a single mom. Please help. Any advice is welcome 🙏
BabyCalin
in
Fertility Network UK
2 years ago
Support for CLL Patients
. *
Care is another UK charity that supports patients with all types of
leukaemia
. Their website is here: https://www.leukaemiacare.org.uk You can chat to a health professional on this number 08088 010 444 or on line.
. *
Care is another UK charity that supports patients with all types of
leukaemia
. Their website is here: https://www.leukaemiacare.org.uk You can chat to a health professional on this number 08088 010 444 or on line.
Jm954
Administrator
in
CLL Support
2 years ago
OncLive 9 CLL Videos - Optimizing the Treatment of CLL With Novel Therapies and more Take-home messages from ASH 2021
The OncLive Chronic Lymphocytic Leukemia condition center page is a comprehensive resource for clinical news and expert insights on treatment advances and ongoing research in chronic lymphocytic leukemia. This page features news articles, interviews in written and video format, and podcasts that focus
The OncLive Chronic Lymphocytic Leukemia condition center page is a comprehensive resource for clinical news and expert insights on treatment advances and ongoing research in chronic lymphocytic leukemia. This page features news articles, interviews in written and video format, and podcasts that focus
lankisterguy
Volunteer
in
CLL Support
2 years ago
Webinar 3.30pm 12th November - CAR-T therapy update
Join our webinar where our expert panel will explain how the therapy works, what is involved and how it is used to treat
leukaemia
. You can register here: https://t.co/0C0mu1r3Ds?
Join our webinar where our expert panel will explain how the therapy works, what is involved and how it is used to treat
leukaemia
. You can register here: https://t.co/0C0mu1r3Ds?
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
New User Name (EPguy) and MPN as a Continuum
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
EPguy
in
MPN Voice
2 years ago
To remove my port or not?
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
napa
in
CLL Support
2 years ago
Information on Acute Myeloid Leukaemia
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
Mysi
in
MPN Voice
2 years ago
Ruxolitinib and weight gain
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Mal42
in
MPN Voice
2 years ago
COVID-19 UPDATES - The latest experimental therapies - not CLL specific, but potential treatment for COVID-19 in many cancer patients
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
lankisterguy
Volunteer
in
CLL Support
2 years ago
New Member to Pancreatitis Support / Patient Intro
Hello Pancreatitis Support, I'm a CLL type
Leukaemia
patient (and part of a great HU community for that. Its a Chronic condition). CLL implies gene defects. DX early 2011, TX 2014/2015 with Chemoimmunotherapy.
Hello Pancreatitis Support, I'm a CLL type
Leukaemia
patient (and part of a great HU community for that. Its a Chronic condition). CLL implies gene defects. DX early 2011, TX 2014/2015 with Chemoimmunotherapy.
Ernest2
in
Chronic Pancreatitis Support
2 years ago
Study shows more Driver Mutations in General Population
The Denmark study used super sensitive tests.. MPNs may be far more common than current info suggets. The image here shows 3% have a Jak2 mutation even as most of these have no MPN Dx. Their cutoff of 1% (orange circle) still includes way more than MPN with Dx (grey circle) Highlights: Their point
The Denmark study used super sensitive tests.. MPNs may be far more common than current info suggets. The image here shows 3% have a Jak2 mutation even as most of these have no MPN Dx. Their cutoff of 1% (orange circle) still includes way more than MPN with Dx (grey circle) Highlights: Their point
EPguy
in
MPN Voice
2 years ago
Light up a star in memory of a loved one via our Make it Shine campaign
Add a shooting, a shining or twinkling star and light up the sky Whatever your reason, you can dedicate a star and at the same time support the ongoing work of
Leukaemia
Care here > https://visufund.com/light-a-star-for-
leukaemia
-care-lonelywithleukaemia Please spread the word
Add a shooting, a shining or twinkling star and light up the sky Whatever your reason, you can dedicate a star and at the same time support the ongoing work of
Leukaemia
Care here > https://visufund.com/light-a-star-for-
leukaemia
-care-lonelywithleukaemia Please spread the word
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Night sweat relief?
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
9RGBZ
in
CLL Support
2 years ago
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