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Feeling really lost and scared.
My husband did have CLL but had Richters Transformation to Lymphoma. He has been having Rituximab with Gemcitabine and Oxaliplatin. However yesterday his Consultant said his platelets are too low (50) to have the 6th and final planned dose. She does not plan to do a scan for a few weeks, has no other
My husband did have CLL but had Richters Transformation to Lymphoma. He has been having Rituximab with Gemcitabine and Oxaliplatin. However yesterday his Consultant said his platelets are too low (50) to have the 6th and final planned dose. She does not plan to do a scan for a few weeks, has no other
krisskross
in
CLL Support
6 years ago
Bendeka, a fast infusion form of bendamustine, gets 7 year exclusivity in U.S.
Bendeka is for the treatment of chronic
lymphocytic
leukemia
(CLL) and non-Hodgkin's lymphoma (NHL). As a result, and consistent with the order issued by the U.S.
Bendeka is for the treatment of chronic
lymphocytic
leukemia
(CLL) and non-Hodgkin's lymphoma (NHL). As a result, and consistent with the order issued by the U.S.
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
Brain fog
It has been a while since I posted. Things have been going well on the Ruxolitinib and my platelets have been coming down steadily. I have been feeling a bit light headed the last few days but experienced serious brain fog for the first time today. I went to do the shopping and firstly couldn’t remember
It has been a while since I posted. Things have been going well on the Ruxolitinib and my platelets have been coming down steadily. I have been feeling a bit light headed the last few days but experienced serious brain fog for the first time today. I went to do the shopping and firstly couldn’t remember
Graham7694
in
MPN Voice
6 years ago
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Being told you have cll or any kind of cancer is a shock to most people ..
I first learned that I had cll in 2016 ….I have read were ginger , chamomile , and turmeric are all good for cll ..I was wondering if any one has tried these and if they feel like they are helping ..other than eating a will balanced meal and getting enough rest as will as staying as stress free as possible
I first learned that I had cll in 2016 ….I have read were ginger , chamomile , and turmeric are all good for cll ..I was wondering if any one has tried these and if they feel like they are helping ..other than eating a will balanced meal and getting enough rest as will as staying as stress free as possible
maddog47
in
CLL Support
6 years ago
FDA Approves Venetoclax (VENCLEXTA) For CLL or SLL with or without 17p deletion, who have received at least one prior therapy
Comprehensive Guide Chronic
Lymphocytic
Leukemia
/ Small
Lymphocytic
Lymphoma Fact Sheet Videos and Webcasts: Chronic
Lymphocytic
Leukemia
/ Small
Lymphocytic
Lymphoma Video Bruce D.
Comprehensive Guide Chronic
Lymphocytic
Leukemia
/ Small
Lymphocytic
Lymphoma Fact Sheet Videos and Webcasts: Chronic
Lymphocytic
Leukemia
/ Small
Lymphocytic
Lymphoma Video Bruce D.
lankisterguy
Volunteer
in
CLL Support
6 years ago
feeling rotten
I am new here. At the moment my red blood cells are low. Fortunately the white blood cells are normal. I have been diagnosed with myelofibrosis in May 2018 just by chance. It was caught in the early stages. The worse thing for me is the lack of energy and bruises. It has been a learning
I am new here. At the moment my red blood cells are low. Fortunately the white blood cells are normal. I have been diagnosed with myelofibrosis in May 2018 just by chance. It was caught in the early stages. The worse thing for me is the lack of energy and bruises. It has been a learning
home1970
in
MPN Voice
6 years ago
Ibrutinib vs FCR: does order of therapy matter?
Time for a really specific question that is at the nub of the decision faced by doctors and patients when it is time to initiate first treatment. Does it matter which treatment we choose first? If you are a younger patient then clearly one of the critical issues is that sadly our disease is rarely cured
Time for a really specific question that is at the nub of the decision faced by doctors and patients when it is time to initiate first treatment. Does it matter which treatment we choose first? If you are a younger patient then clearly one of the critical issues is that sadly our disease is rarely cured
AdrianUK
in
CLL Support
6 years ago
NHSE publish positive review outcome for Ibrutinib use in relapsed CLL
Hi all, I have pasted below the Leukaemia Care response to today's good news, following the work of Leukaemia Care, CLLSA, The UK CLL Forum and so many of us together, to get this turn around. Well done everyone. Today NHS England removes restrictions that had been preventing relapsed chronic lymphocytic
Hi all, I have pasted below the Leukaemia Care response to today's good news, following the work of Leukaemia Care, CLLSA, The UK CLL Forum and so many of us together, to get this turn around. Well done everyone. Today NHS England removes restrictions that had been preventing relapsed chronic lymphocytic
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Green tea with SLE
Hi there I have recently started drinking green tea only once a day in evening. Today I feel like I'm going to have an anxiety attack weird sensations. Has anyone else experienced these symptoms??
Hi there I have recently started drinking green tea only once a day in evening. Today I feel like I'm going to have an anxiety attack weird sensations. Has anyone else experienced these symptoms??
Hidden
in
LUPUS UK
6 years ago
Any ideas?
Hi. I have joined this community to seek some idea as to what to expect for my friend. He was diagnosed with ALL earlier this year. All very sudden. He went through chemo regimes and subsequent stem cell transplant two months ago. All bloods and recovery going well. Last bloods about a week ago - all
Hi. I have joined this community to seek some idea as to what to expect for my friend. He was diagnosed with ALL earlier this year. All very sudden. He went through chemo regimes and subsequent stem cell transplant two months ago. All bloods and recovery going well. Last bloods about a week ago - all
Marilyn1959
in
Leukaemia CARE
6 years ago
Response and Survival Rates for FCR and Ibrutinib
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
AdrianUK
in
CLL Support
6 years ago
Clonal Evolution, mutations and resistance to CLL treatment
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
AdrianUK
in
CLL Support
6 years ago
Bone Marrow Biopsy showing Manoclonal B Lymphocytosis
Hello My name is Gloria, My husband Angel has been fighting small B-Cell
Lymphocytic
Leukemia
/lymphoma for more than 8 years and none of the chemotherapy has helped him.
Hello My name is Gloria, My husband Angel has been fighting small B-Cell
Lymphocytic
Leukemia
/lymphoma for more than 8 years and none of the chemotherapy has helped him.
gsanchez
in
CLL Support
6 years ago
CLL Society Alert July 24, 2018 - Video Dr. Kipps on Cirmtuzumab - Paid Survey for USA CLL patients - Local support group meetings
The nonprofit CLL Society is working with a research partner to find people in the US living with chronic
lymphocytic
leukemia
(CLL) who will be willing to take part in phone based conversations related to their disease. Those taking part will be paid for their time.
The nonprofit CLL Society is working with a research partner to find people in the US living with chronic
lymphocytic
leukemia
(CLL) who will be willing to take part in phone based conversations related to their disease. Those taking part will be paid for their time.
lankisterguy
Volunteer
in
CLL Support
6 years ago
Saturday 8th September, Malvern 'Spot Leukaemia', fun dog show, picnic and dog walk
If you are in the Midlands come and join us in the first week of Blood Cancer Awareness Month for a fun day out to help raise awareness about the condition and how early diagnosis, appropriate testing and timely access to information improves outcomes and quality of life. please let others know and circulate
If you are in the Midlands come and join us in the first week of Blood Cancer Awareness Month for a fun day out to help raise awareness about the condition and how early diagnosis, appropriate testing and timely access to information improves outcomes and quality of life. please let others know and circulate
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
CLL Society Alert 31 July 2018 Interview with Dr. Adrian Wiestner & Upcoming Support Group Meetings
https://cllsociety.org/2018/07/ash-2017-dr-adrian-wiestner-on-resistance-mechanism-in-cll-chronic-
lymphocytic
-
leukemia
/?utm_source=July+31%2C+2018&utm_campaign=July+24%2C+2018+Alert&utm_medium=email - Special Announcement!
https://cllsociety.org/2018/07/ash-2017-dr-adrian-wiestner-on-resistance-mechanism-in-cll-chronic-
lymphocytic
-
leukemia
/?utm_source=July+31%2C+2018&utm_campaign=July+24%2C+2018+Alert&utm_medium=email - Special Announcement!
lankisterguy
Volunteer
in
CLL Support
6 years ago
Medicinal cannabis
I’ve been told by my GP that he can no longer prescribe Fentanyl lozenges for my breakthrough pain. I’ve always known they are palliative care drugs. They worked for me. Now I’m stressed about how I’ll cope when my last two are gone. Has anyone else had medicinal cannabis prescribed? If so did it work
I’ve been told by my GP that he can no longer prescribe Fentanyl lozenges for my breakthrough pain. I’ve always known they are palliative care drugs. They worked for me. Now I’m stressed about how I’ll cope when my last two are gone. Has anyone else had medicinal cannabis prescribed? If so did it work
Rob395
in
Lung Conditions Community Forum
6 years ago
FLAIR Study Site List Map / UK CLL Expert Centres
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
AdrianUK
in
CLL Support
6 years ago
Nplate didn't has any effect
My wife had an inject of Nplate 5 days ago Her platelets count was 76 before inject Now after 5days of inject she has 72 count of platelete It seem Nplate didn't has any effect on my wife, what is reason? She had treatment with ivig and rituximub in the past, and those drugs didn't has complete effect
My wife had an inject of Nplate 5 days ago Her platelets count was 76 before inject Now after 5days of inject she has 72 count of platelete It seem Nplate didn't has any effect on my wife, what is reason? She had treatment with ivig and rituximub in the past, and those drugs didn't has complete effect
hamid_80386
in
ITP Support Association
6 years ago
NCS Nerve Conduction Studies EMG Electromyography
Well it’s all happing pain in arms when trying to open packet crisp even holding carrying milk is pain full. That’s with out dexterity issues .. Today received other letter of people who referred me for NCS/EMG Neurophysiology Test guess it’s going to be for results of Sunday’s going’s on ... It’s just
Well it’s all happing pain in arms when trying to open packet crisp even holding carrying milk is pain full. That’s with out dexterity issues .. Today received other letter of people who referred me for NCS/EMG Neurophysiology Test guess it’s going to be for results of Sunday’s going’s on ... It’s just
Hidden
in
Lung Conditions Community Forum
6 years ago
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