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New booklets
Hello all, Just popping in to tell you that a further two booklets have become available on our website: CLL - this is a review booklet, which means it has been updated to be as up-to-date and informative as possible. You can download it here: http://www.leukaemiacare.org.uk/resources/chronic-lymphocytic-leukaemia
Hello all, Just popping in to tell you that a further two booklets have become available on our website: CLL - this is a review booklet, which means it has been updated to be as up-to-date and informative as possible. You can download it here: http://www.leukaemiacare.org.uk/resources/chronic-lymphocytic-leukaemia
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
7 years ago
Cll and fatigue
I was diagnosed in November 2017 with stage 0 cll; FISH test is negative; and now waiting on NGS/foundation test results. The biggest problem I have right now is chronic fatigue that is on the point of being debilitating, also infrequent headaches. My family doctor prescribed Adderall to help with the
I was diagnosed in November 2017 with stage 0 cll; FISH test is negative; and now waiting on NGS/foundation test results. The biggest problem I have right now is chronic fatigue that is on the point of being debilitating, also infrequent headaches. My family doctor prescribed Adderall to help with the
TXteacher
in
CLL Support
6 years ago
Autogenic training..
Hello BLF friends This is how I came to meditation in fact. Truth is I had a small cancer years ago..I felt alright while I had gathered my energy to fight it but I needed the relaxation technique to get on with family life and work. It is a suggestive method. In fact I was taught to do my own, once
Hello BLF friends This is how I came to meditation in fact. Truth is I had a small cancer years ago..I felt alright while I had gathered my energy to fight it but I needed the relaxation technique to get on with family life and work. It is a suggestive method. In fact I was taught to do my own, once
Hidden
in
Lung Conditions Community Forum
7 years ago
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Stem cell transplant
Hello! So I have just had my monthly visit with my CLL haemotologist. Preparing to go onto a trial with Ibrutinib and Venetoclax. Glands swollen and large all over. I am 11q unmutated lymphocytes trending upwards at 50 and last month were 33. Hb going slightly downwards but not bad. Everything else good
Hello! So I have just had my monthly visit with my CLL haemotologist. Preparing to go onto a trial with Ibrutinib and Venetoclax. Glands swollen and large all over. I am 11q unmutated lymphocytes trending upwards at 50 and last month were 33. Hb going slightly downwards but not bad. Everything else good
DebLeeCox
in
CLL Support
7 years ago
Leukemia/Lmphoma CLL/SLL
I was wondering if anyone can help with a question. Under which does CLL fall leukemia or lymphoma? The same with SLL.
I was wondering if anyone can help with a question. Under which does CLL fall leukemia or lymphoma? The same with SLL.
Naka
in
CLL Support
7 years ago
Need help dosing turmeric and green tea for CLL
Diagnosed with CLL in October 2017 and the doctor said I don’t need medication. He mentioned turmeric and green tea can have a benefit but couldn’t legally or ethically tell me how much to take. I am at a loss and would appreciate help.
Diagnosed with CLL in October 2017 and the doctor said I don’t need medication. He mentioned turmeric and green tea can have a benefit but couldn’t legally or ethically tell me how much to take. I am at a loss and would appreciate help.
Mwagner
in
CLL Support
7 years ago
What is happening?
Hello!! I had terrible 2 days. Our doctor couldn't continue with RB theraphy because my husbands HGB counts only 5. They started to blood transfusion and made a Bone Marrow biopsy. The doctor said he has to find the reason of this low HGB, maybe the CLL has transformed to something else. We have to
Hello!! I had terrible 2 days. Our doctor couldn't continue with RB theraphy because my husbands HGB counts only 5. They started to blood transfusion and made a Bone Marrow biopsy. The doctor said he has to find the reason of this low HGB, maybe the CLL has transformed to something else. We have to
aylinozel
in
CLL Support
7 years ago
do i have polycethemia?
Hi my name is malk. During my visit to my psychiatrist my doc did blood test as they usually do every six months. I am obviously concerned with some of my readings and wanted to see what you guys thought. WBC. 4.79. 3.8-12.8 RBC. 6.04 4.2- 5.7 Hemoglobin. 16.7. 14-18.0 Hematocrit. 50. 42.2
Hi my name is malk. During my visit to my psychiatrist my doc did blood test as they usually do every six months. I am obviously concerned with some of my readings and wanted to see what you guys thought. WBC. 4.79. 3.8-12.8 RBC. 6.04 4.2- 5.7 Hemoglobin. 16.7. 14-18.0 Hematocrit. 50. 42.2
emem1976
in
MPN Voice
7 years ago
Winter Walk for CLL Support Association
Hi everyone, I was diagnosed with chronic lymphocyte leukemia on my 68th Birthday in 2012 and was on watch and wait for 3years before treatment. I completed my treatment in March 2016 and I am now in remission and I am extremely well and have much more energy. WINNERS DO NOT QUIT AND QUITTERS DO NOT
Hi everyone, I was diagnosed with chronic lymphocyte leukemia on my 68th Birthday in 2012 and was on watch and wait for 3years before treatment. I completed my treatment in March 2016 and I am now in remission and I am extremely well and have much more energy. WINNERS DO NOT QUIT AND QUITTERS DO NOT
surjeet44
in
CLL Support
7 years ago
Marijuana Kills Cancer Cells?
I've read some scientific and a lot of anecdotal info claiming marijuana kills tumor cells. Has anyone experimented with this or gained any medical benefit from marijuana use? https://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq
I've read some scientific and a lot of anecdotal info claiming marijuana kills tumor cells. Has anyone experimented with this or gained any medical benefit from marijuana use? https://www.cancer.gov/about-cancer/treatment/cam/hp/cannabis-pdq
TXteacher
in
CLL Support
7 years ago
Breast mastectomy and reconstruction
Hi. I’m new here though been diagnosed since 2012. I had a recent mastectomy and breast reconstruction using tummy tissue. Unfortunately my reconstruction failed and had to be removed a few days later due to issues with blood supply. Anyone else with lupus have a similar experience?
Hi. I’m new here though been diagnosed since 2012. I had a recent mastectomy and breast reconstruction using tummy tissue. Unfortunately my reconstruction failed and had to be removed a few days later due to issues with blood supply. Anyone else with lupus have a similar experience?
Hidden
in
LUPUS UK
7 years ago
Trying to help an acquaintance who lives close to the Black Sea,in Georgia, who has just been told that her CLL has turned into B-PLL.
Someone has reached out to me and is looking for a way to have her B-PLL treated. She lives in the Baltics and where she is located they apparently do not have the best medical resources. I have given her the names of certain doctors here in the USA. I mentioned to her that I thought
Someone has reached out to me and is looking for a way to have her B-PLL treated. She lives in the Baltics and where she is located they apparently do not have the best medical resources. I have given her the names of certain doctors here in the USA. I mentioned to her that I thought
jettyguy1
in
CLL Support
7 years ago
Past numbers
My medical records etc are now available online. So I checked some of my old results.. 14 Nov 2014 vvvv (Admin/Clinical Support Access Role) Medical Practice (General Practice) Coded entry Haematocrit 0.519 14 Nov 2014 (Admin/Clinical Support Access Role) Medical Practice (General
My medical records etc are now available online. So I checked some of my old results.. 14 Nov 2014 vvvv (Admin/Clinical Support Access Role) Medical Practice (General Practice) Coded entry Haematocrit 0.519 14 Nov 2014 (Admin/Clinical Support Access Role) Medical Practice (General
shiftzz
in
MPN Voice
7 years ago
Persistent node
so, I'm pretty sure everything's going to be fine, but my CT scan last week showed one axillary node that's not shrinking, so having a precautionary biopsy later this week. Dr. just wants to know my CLL isn't transforming to Large Cell Lymphoma. I'm being treated with Venetoclax for my fourth go-round
so, I'm pretty sure everything's going to be fine, but my CT scan last week showed one axillary node that's not shrinking, so having a precautionary biopsy later this week. Dr. just wants to know my CLL isn't transforming to Large Cell Lymphoma. I'm being treated with Venetoclax for my fourth go-round
MelindaB
in
CLL Support
7 years ago
Emerging CLL treatments beyond Imbruvica and Venetoclax. I am not an expert - though. Feel free to copy , edit and repost.
Hello, I am on a trial of Imbruvica and Venetoclax and doing well so far. I am 17P deleted so I am looking at future options- if needed. Fortunately there are a lot of new emerging treatments. I am not an expert - though. Feel free to add on copy , edit and repost! Below are some of the new CLL
Hello, I am on a trial of Imbruvica and Venetoclax and doing well so far. I am 17P deleted so I am looking at future options- if needed. Fortunately there are a lot of new emerging treatments. I am not an expert - though. Feel free to add on copy , edit and repost! Below are some of the new CLL
Hoffy
in
CLL Support
7 years ago
Essentially Thrombocythemia (Exon 10)
I was wondering if anyone else has an Exon 10 mutation as it seems very rare. It’s similar in characteristics as JAK2, I was diagnosed with Exon 10 (ET) June 2016
I was wondering if anyone else has an Exon 10 mutation as it seems very rare. It’s similar in characteristics as JAK2, I was diagnosed with Exon 10 (ET) June 2016
Raphael_UK
in
MPN Voice
7 years ago
Bad 2017, must get better.
A well sorry I've not been on in ages, health and personal life has been bad this year. Since January this year my stomache has been really up set, had cameras put up and down everywhere, biopsies taken from colon-stomache. I had a groath removed from my colon last year-non cancerious then this yesr
A well sorry I've not been on in ages, health and personal life has been bad this year. Since January this year my stomache has been really up set, had cameras put up and down everywhere, biopsies taken from colon-stomache. I had a groath removed from my colon last year-non cancerious then this yesr
1968
in
Lung Conditions Community Forum
7 years ago
Friend or not a friend??
Hi Folks, I was out with a friend this week, she is a bit or rather a complete health freak!!! Which I except, but she started spouting on about my treatment with Hydroxy, and started to tell me that I should try and eliminate it from my life as it very toxic, and can cause cancers to spread, well I
Hi Folks, I was out with a friend this week, she is a bit or rather a complete health freak!!! Which I except, but she started spouting on about my treatment with Hydroxy, and started to tell me that I should try and eliminate it from my life as it very toxic, and can cause cancers to spread, well I
Superwoman
in
MPN Voice
7 years ago
Just diagnosed
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
TXteacher
in
CLL Support
7 years ago
Epo. London mpn day
I'll be going to the london mpn day on18 th. I'm feeling tired and fed up. I've had 4 weekly epo injections and not much response. The energy I had at first was due to the blood transfusion I had at the same time, I think, because that's now worn off. I feel as tho I can't handle life at all. Which
I'll be going to the london mpn day on18 th. I'm feeling tired and fed up. I've had 4 weekly epo injections and not much response. The energy I had at first was due to the blood transfusion I had at the same time, I think, because that's now worn off. I feel as tho I can't handle life at all. Which
Rachelthepotter
in
MPN Voice
7 years ago
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