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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
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
FLAIR Study Site List Map / UK CLL Expert Centres
FLAIR study is available at the following link (but note that the Ibrutinib plus rituxamab arm because it opened first has now closed as they have already recruited enough patients) https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-ibrutinib-rituximab-chronic-lymphocytic-
leukaemia
-flair
FLAIR study is available at the following link (but note that the Ibrutinib plus rituxamab arm because it opened first has now closed as they have already recruited enough patients) https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-ibrutinib-rituximab-chronic-lymphocytic-
leukaemia
-flair
AdrianUK
in
CLL Support
6 years ago
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Results not yet diagnosed
My dad and his brother died of a type of
leukaemia
and I’ve been found to have an excessive amount of cervical lymph nodes.
My dad and his brother died of a type of
leukaemia
and I’ve been found to have an excessive amount of cervical lymph nodes.
HeatherS-UK
in
CLL Support
6 years ago
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
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
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 Support
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
HRT
She checked her medicine book and there were no contraindications for
leukaemia
but just wondered if anyone else had any knowledge or experience? I've always been someone who said I'd never have it but I'm having severe issues and benefits may outweigh the risks. Thanks. I have HCL.
She checked her medicine book and there were no contraindications for
leukaemia
but just wondered if anyone else had any knowledge or experience? I've always been someone who said I'd never have it but I'm having severe issues and benefits may outweigh the risks. Thanks. I have HCL.
emmieb-UK
in
Leukaemia 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
ET progression question
The Canadian lymphoma association says that the likelihood of ET progressing to MF or
leukaemia
is about 1%. My haematologist says maybe 3 to 5%. In any case very very low. I am assuming that is the experience with most of those on this forum – – even the long-termers. Is my assumption correct?
The Canadian lymphoma association says that the likelihood of ET progressing to MF or
leukaemia
is about 1%. My haematologist says maybe 3 to 5%. In any case very very low. I am assuming that is the experience with most of those on this forum – – even the long-termers. Is my assumption correct?
WileyFrench
in
MPN Voice
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
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
Is anyone been diagnosed with acute Leukemia
I went for a bone biopsy and the doctor thinks I might have it please let me how you’re dealing with it
I went for a bone biopsy and the doctor thinks I might have it please let me how you’re dealing with it
Chil67
in
MPN Voice
6 years ago
TAMARIN STUDY now open across the UK in 13 hospitals
TAMARIN STUDY
The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre phase II clinical trial which will assess the safety and activity of Tamoxifen in MPNs. Many people with MPNs have mutations (changes) to certain
TAMARIN STUDY
The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre phase II clinical trial which will assess the safety and activity of Tamoxifen in MPNs. Many people with MPNs have mutations (changes) to certain
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Does Vitamin C really help with CLL?
Firstly the report does not specify what type of chronic
leukaemia
is being investigated, so is it CML (chronic myloid
leukaemia
) or CLL (Chronic Lymphacytic
Leukaemia
)? It also seems to confuse the pre-leukaemic state with a fully diagnosed condition.
Firstly the report does not specify what type of chronic
leukaemia
is being investigated, so is it CML (chronic myloid
leukaemia
) or CLL (Chronic Lymphacytic
Leukaemia
)? It also seems to confuse the pre-leukaemic state with a fully diagnosed condition.
catmad1
in
CLL Support
6 years ago
Medical update with no Ibrutinib
Hi all Just an update. As you know I was denied Ibrutinib as I was in remission for 3.8 years and NHS England put a cap at 3 years before relapse. Anyway I've been really struggling and I saw the consultant on Tuesday and he got me in today for the first of 3 strong dosage IV Steriods. The original
Hi all Just an update. As you know I was denied Ibrutinib as I was in remission for 3.8 years and NHS England put a cap at 3 years before relapse. Anyway I've been really struggling and I saw the consultant on Tuesday and he got me in today for the first of 3 strong dosage IV Steriods. The original
Mick491
in
CLL Support
6 years ago
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