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New to it all
62 yo male here; was diagnosed with CLL in November of 2018. After three sets of bloodwork, a CT and a boner marrow biopsy Im told I continue on watch and wait. My only symptom is extreme fatigue which precludes me from working 8 hours a day. I should note that I’m also a long time bariatric patient.
62 yo male here; was diagnosed with CLL in November of 2018. After three sets of bloodwork, a CT and a boner marrow biopsy Im told I continue on watch and wait. My only symptom is extreme fatigue which precludes me from working 8 hours a day. I should note that I’m also a long time bariatric patient.
Pokerguy
in
CLL Support
5 years ago
CLL and Medical Marijuana
Has anyone found Medical marijuana CBD/THC tincture to be helpful with sleep and anxiety due to watch and wait stage? Injesting anything foreign is a concern with a compromised immune system but the same can be said for Chemo. ?
Has anyone found Medical marijuana CBD/THC tincture to be helpful with sleep and anxiety due to watch and wait stage? Injesting anything foreign is a concern with a compromised immune system but the same can be said for Chemo. ?
Madprofessor22
in
CLL Support
5 years ago
What questions should I ask the consultant?
I have an appointment this afternoon. The Drs suspect that I have Essential Thrombocythemia but I have not had a diagnosis. I have had a bone marrow biopsy but have not yet had the results, I should be getting them later today. Any advice on questions that I should ask? Thank you in advance
I have an appointment this afternoon. The Drs suspect that I have Essential Thrombocythemia but I have not had a diagnosis. I have had a bone marrow biopsy but have not yet had the results, I should be getting them later today. Any advice on questions that I should ask? Thank you in advance
Notenoughbluefood
in
MPN Voice
5 years ago
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Efficacy of venetoclax monotherapy in patients with relapsed CLL in the post‐BCR inhibitor setting: a UK wide analysis
Feb 2019 Venetoclax is a BCL2 inhibitor with activity in relapsed/refractory (R/R) chronic lymphocytic
leukaemia
(CLL). We conducted a multi‐centre retrospective analysis of 105 R/R CLL patients who received venetoclax pre‐National Health Service commissioning.
Feb 2019 Venetoclax is a BCL2 inhibitor with activity in relapsed/refractory (R/R) chronic lymphocytic
leukaemia
(CLL). We conducted a multi‐centre retrospective analysis of 105 R/R CLL patients who received venetoclax pre‐National Health Service commissioning.
Jm954
Administrator
in
CLL Support
5 years ago
Mode of Progression After Frontline Treatment Predicts Clinical Outcomes in Patients With CLL
Not only is CLL heterogeneous in watch and wait, that's also the case after treatment. An analysis of over 2,000 patients from three German CLL Study Group clinical trials has identified that unfit patients developing lymphadenopathy (swelling nodes) have a significantly lower median overall survival
Not only is CLL heterogeneous in watch and wait, that's also the case after treatment. An analysis of over 2,000 patients from three German CLL Study Group clinical trials has identified that unfit patients developing lymphadenopathy (swelling nodes) have a significantly lower median overall survival
AussieNeil
Partner
in
CLL Support
5 years ago
cll/sll or MZL? & Rituxan
I'm month three of trying to get properly diagnosed. Initial cll/sll diagnosis now in doubt at two leading cancer centers because I am cd20 bright. So MZL or some other type of small b cell lymphoma is hypothesized. Yesterday I saw a lymphoma specialist who recommended rituxan now even though I don't
I'm month three of trying to get properly diagnosed. Initial cll/sll diagnosis now in doubt at two leading cancer centers because I am cd20 bright. So MZL or some other type of small b cell lymphoma is hypothesized. Yesterday I saw a lymphoma specialist who recommended rituxan now even though I don't
Sunfishjoy
in
CLL Support
5 years ago
Discontinuation of ibrutinib
Hi everyone! It´s been a while since my last post. My mother continues taking ibrutinib, almost 3 years now and doing fine. But right now she has to prepare for a digestive endoscopy, which is ineluctable, so she has to discontinue ibrutinib treatment. My mother is very sensitive to these kind of discontinuations
Hi everyone! It´s been a while since my last post. My mother continues taking ibrutinib, almost 3 years now and doing fine. But right now she has to prepare for a digestive endoscopy, which is ineluctable, so she has to discontinue ibrutinib treatment. My mother is very sensitive to these kind of discontinuations
nicolas_12
in
CLL Support
5 years ago
No comfort from Insurance Cos while suffering from Cancer
It’s 3 years since I was diagnosed with CLL stage 0 and got another set back yesterday Turned down for LTC policy While I did not ask for this cancer yet I feel like a second class citizen I understand there is risk to the insurance company and underwriters but during times of suffering one of the
It’s 3 years since I was diagnosed with CLL stage 0 and got another set back yesterday Turned down for LTC policy While I did not ask for this cancer yet I feel like a second class citizen I understand there is risk to the insurance company and underwriters but during times of suffering one of the
Hidden
in
CLL Support
5 years ago
Move over MRD Negative and make way for uMRD - Undetectable Minimal Residual Disease
Panel members were Lizette Figueroa, Director, Education and Support, Leukemia and Lymphoma Society, Dr Koffman, Zack Pemberton-Whiteley, Patient Advocacy Director,
Leukaemia
Care, Dave Fuehrer, CEO of GRYT Health - grythealth.com/about which is similar to HealthUnlocked but for a younger demographic
Panel members were Lizette Figueroa, Director, Education and Support, Leukemia and Lymphoma Society, Dr Koffman, Zack Pemberton-Whiteley, Patient Advocacy Director,
Leukaemia
Care, Dave Fuehrer, CEO of GRYT Health - grythealth.com/about which is similar to HealthUnlocked but for a younger demographic
AussieNeil
Partner
in
CLL Support
5 years ago
MRD-U Baby your one of four in two million!
So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and to talk about odd things or decision points with. He explained that one of the tests that had been done in my bone marrow had a sensitivity
So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and to talk about odd things or decision points with. He explained that one of the tests that had been done in my bone marrow had a sensitivity
AdrianUK
in
CLL Support
5 years ago
Patient to help us with a drug appraisal for NICE - can you help?
Leukaemia
Care are currently working with NICE as they decide whether to fund the use of gilteritinib (brand name Xospata) on the NHS. This is a drug for AML patients.
Leukaemia
Care are currently working with NICE as they decide whether to fund the use of gilteritinib (brand name Xospata) on the NHS. This is a drug for AML patients.
KnitEatCrochetRepeat
in
Leukaemia Support
5 years ago
Lymphoblastic lukaemia
My mum died after a 2 hr battle with lymphoblastic
leukaemia
yesterday she grew her wings and died peacefully
My mum died after a 2 hr battle with lymphoblastic
leukaemia
yesterday she grew her wings and died peacefully
Melza27
in
Leukaemia Support
5 years ago
Living Beyond Lymphoma: Mindfulness Teleconference Wednesday, July 31, 2019 1:30 PM -- 2:30 PM ET
Teleconference - Living Beyond Lymphoma: Mindfulness http://support.lymphoma.org/site/MessageViewer;jsessionid=00000000.app30116b?em_id=4128.0&dlv_id=7636&NONCE_TOKEN=3BD44384886320C15278EFEE84201187 The Lymphoma Research Foundation's (LRF) Living Beyond Lymphoma: Mindfulness teleconference explores
Teleconference - Living Beyond Lymphoma: Mindfulness http://support.lymphoma.org/site/MessageViewer;jsessionid=00000000.app30116b?em_id=4128.0&dlv_id=7636&NONCE_TOKEN=3BD44384886320C15278EFEE84201187 The Lymphoma Research Foundation's (LRF) Living Beyond Lymphoma: Mindfulness teleconference explores
lankisterguy
Volunteer
in
CLL Support
5 years ago
Mushrooms
I’ve read a lot about their medical benefits and there’s quite a bit of reference to
leukaemia
, and some past reference to CLL.
I’ve read a lot about their medical benefits and there’s quite a bit of reference to
leukaemia
, and some past reference to CLL.
shellsb
in
CLL Support
5 years ago
Worried
All the symptoms seem to line up with blood cancer and I am scared I may have
leukaemia
or myeloma or just anything to do with cancer! I’m bed bound with fear and anxiety. If anyone has any advice on what step to take next with my GP or reassurance. It would be greatly appreciated. Thank you.
All the symptoms seem to line up with blood cancer and I am scared I may have
leukaemia
or myeloma or just anything to do with cancer! I’m bed bound with fear and anxiety. If anyone has any advice on what step to take next with my GP or reassurance. It would be greatly appreciated. Thank you.
Sugarplum1811
in
Leukaemia Support
5 years ago
CLL Society Tribune!
Welcome to the Second 2019 Issue of The CLL Society Tribune. https://cllsociety.org/quarter-2-2019-volume-5-issue-2/?utm_source=CLL+Tribune+Q2+2019&utm_campaign=Quarter+2+2019%3A+Volume+5+Issue+2&utm_medium=email Dear Friends and Supporters of the CLL Society. Welcome to the growing and evolving
Welcome to the Second 2019 Issue of The CLL Society Tribune. https://cllsociety.org/quarter-2-2019-volume-5-issue-2/?utm_source=CLL+Tribune+Q2+2019&utm_campaign=Quarter+2+2019%3A+Volume+5+Issue+2&utm_medium=email Dear Friends and Supporters of the CLL Society. Welcome to the growing and evolving
lankisterguy
Volunteer
in
CLL Support
5 years ago
Clinical trial results & reviews of new treatments for CLL written in easy to understand terms
Anyone interested in reading a weekly update of the latest breaking news for CLL may want to sign up to get emails from this source: https://medivizor.com/?login=2 Here are the three links for the articles mentioned in the picture above: https://medivizor.com/view_article/29947395?id=31210 https://
Anyone interested in reading a weekly update of the latest breaking news for CLL may want to sign up to get emails from this source: https://medivizor.com/?login=2 Here are the three links for the articles mentioned in the picture above: https://medivizor.com/view_article/29947395?id=31210 https://
lankisterguy
Volunteer
in
CLL Support
5 years ago
'Sticky' cholesterol
As some of you will know, I am a newbie, and it's likely that the medication I was on to control my
leukaemia
has led to me developing all kinds of lovely side effects. Today at the lipid clinic, on reviewing my fasting blood test, the doctor asked if anyone had told me I had 'sticky' cholesterol.
As some of you will know, I am a newbie, and it's likely that the medication I was on to control my
leukaemia
has led to me developing all kinds of lovely side effects. Today at the lipid clinic, on reviewing my fasting blood test, the doctor asked if anyone had told me I had 'sticky' cholesterol.
SomersetJo
in
British Heart Foundation
5 years ago
Pre Fibrotic Myelodibrosis
Just wondered if there was anyone else in this group who has been diagnosed with prefibrotic Myelofibrosis . It was only discovered in 2016 and when I found I had it my platelets were 1600 and I had a low amount of fibrosis in my bone marrow. Apparently it may or may not develop into full Myelofibrosis
Just wondered if there was anyone else in this group who has been diagnosed with prefibrotic Myelofibrosis . It was only discovered in 2016 and when I found I had it my platelets were 1600 and I had a low amount of fibrosis in my bone marrow. Apparently it may or may not develop into full Myelofibrosis
kiwitraveller
in
MPN Voice
5 years ago
Dr. Wang of Mayo on Richter's Transformation and my Irish Podcast on CAR-T
Hi, This week we published my interview with Dr. Wang from Mayo about Richter’s Transformation. This is increasingly a problem as we are living longer with our CLL, but RT still has a dismal prognosis Here is that interview https://cllsociety.org/2019/06/ash-2018-dr-wang-on-richters-transformation-in-cll-chronic-lymphocytic-leukemia
Hi, This week we published my interview with Dr. Wang from Mayo about Richter’s Transformation. This is increasingly a problem as we are living longer with our CLL, but RT still has a dismal prognosis Here is that interview https://cllsociety.org/2019/06/ash-2018-dr-wang-on-richters-transformation-in-cll-chronic-lymphocytic-leukemia
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
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