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Leukaemia and Memory.
Hi, me again, DH has had his regular CLL monitoring recently, and met his Clinical Nurse Specialist. He has also been referred to the memory clinic. I had definitely noticed his memory getting a lot worse. Obviously, the memory clinic is there to help, and support such issues, but, of course, it is a
Hi, me again, DH has had his regular CLL monitoring recently, and met his Clinical Nurse Specialist. He has also been referred to the memory clinic. I had definitely noticed his memory getting a lot worse. Obviously, the memory clinic is there to help, and support such issues, but, of course, it is a
DrunkJam_UK
in
Leukaemia Support
6 years ago
Promising results for MF Trial - Pacritinib
https://jamanetwork.com/journals/jamaoncology/fullarticle/2674384 A trial comparing pacritinib daily dose of 400mg versus pacritinib daily 2 x 200mg versus Best Available Therapy (BAT). BAT was primarily Ruxo/Jakafi. Perhaps the most interesting bit is the number of participants who switched mid trial
https://jamanetwork.com/journals/jamaoncology/fullarticle/2674384 A trial comparing pacritinib daily dose of 400mg versus pacritinib daily 2 x 200mg versus Best Available Therapy (BAT). BAT was primarily Ruxo/Jakafi. Perhaps the most interesting bit is the number of participants who switched mid trial
Paul123456
in
MPN Voice
6 years ago
Flair Trial and Co- Trimoxazole
Hi I'm on the Flair Trial in the uk I've been on Idrutinib for 21 months . Went yesterday for my 3 monthly check. Bloods and examination and all Is good , bloods are near normal, no enlarged nodes , usual few side effects a little bit of petechiae diarrhoea a few mouth sores ,See my specialist again
Hi I'm on the Flair Trial in the uk I've been on Idrutinib for 21 months . Went yesterday for my 3 monthly check. Bloods and examination and all Is good , bloods are near normal, no enlarged nodes , usual few side effects a little bit of petechiae diarrhoea a few mouth sores ,See my specialist again
Chuddie48
in
CLL Support
6 years ago
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Appointment with Radiologist
Attended hospital today for first appointment with radiologist who advised that I could have a “one off “ dose of radiology to hopefully shrink the tumour on my right lung to prevent it spreading into the spinal cord (it has attached itself to my spine already). Have to attend the hospital tomorrow
Attended hospital today for first appointment with radiologist who advised that I could have a “one off “ dose of radiology to hopefully shrink the tumour on my right lung to prevent it spreading into the spinal cord (it has attached itself to my spine already). Have to attend the hospital tomorrow
Lmax
in
Lung Conditions Community Forum
6 years ago
Second Opinion CLL
Just a side note to all my Unlocked friends. My first Oncologist tested me (bone Marrow sample and blood test) and told me I had stage 2 lymphoma. This was a fairly well respected doctor and I had no reason to doubt her. My wife kept pestering me to get a second opinion which I finally gave into and
Just a side note to all my Unlocked friends. My first Oncologist tested me (bone Marrow sample and blood test) and told me I had stage 2 lymphoma. This was a fairly well respected doctor and I had no reason to doubt her. My wife kept pestering me to get a second opinion which I finally gave into and
barger1951
in
CLL Support
6 years ago
Outcomes of haploidentical stem cell transplantation for chronic lymphocytic leukemia: a retrospective study
[i]An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor. HLA proteins are found on all cells of our body and are the main way the immune system tells the
[i]An allogeneic haemopoietic stem cell (HPC) transplant involves matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor. HLA proteins are found on all cells of our body and are the main way the immune system tells the
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
Low WBC
I have a granddaughter who has Down Syndrome. Her WBC is low, 3, and ANC is 1.1. I know both are low and trending slightly down but I am unsure of the meaning. We are aware that children like her have a tendency toward leukemia. I thought leukemia meant a high WBC. Hg and platelets are good. Thoughts
I have a granddaughter who has Down Syndrome. Her WBC is low, 3, and ANC is 1.1. I know both are low and trending slightly down but I am unsure of the meaning. We are aware that children like her have a tendency toward leukemia. I thought leukemia meant a high WBC. Hg and platelets are good. Thoughts
Fant1924
in
CLL Support
6 years ago
A global snapshot of leukemia incidence
FROM THE LANCET HAEMATOLOGY: [i]"Chronic lymphocytic leukemia incidence was highest for men in Canada (4.5 per 100,000), Ireland and Lithuania (4.4), and Slovakia (4.3). The incidence was highest for women in Lithuania (2.5), Canada (2.3), and Slovakia and Denmark (2.1). Incidence in the United States
FROM THE LANCET HAEMATOLOGY: [i]"Chronic lymphocytic leukemia incidence was highest for men in Canada (4.5 per 100,000), Ireland and Lithuania (4.4), and Slovakia (4.3). The incidence was highest for women in Lithuania (2.5), Canada (2.3), and Slovakia and Denmark (2.1). Incidence in the United States
AussieNeil
Partner
in
CLL Support
6 years ago
CAR-T update and more
Hi, Been busy and tired, trying to get ahead of what I need to do while spending many hours at the hospital at the Seattle Cancer Care Alliance (SCCA). Writing this with fludarabine and cyclophosphamide running through my PICC line to make room for the CAR-T cells on March 22. I have tried to keep the
Hi, Been busy and tired, trying to get ahead of what I need to do while spending many hours at the hospital at the Seattle Cancer Care Alliance (SCCA). Writing this with fludarabine and cyclophosphamide running through my PICC line to make room for the CAR-T cells on March 22. I have tried to keep the
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
This looks a really promising new treatment
RG7388 is an existing drug used in
Acute
Leukaemia
, hence has a track record. My very rough and amateurish synopsis: We all have a p53 gene which effectively fights cancer.
RG7388 is an existing drug used in
Acute
Leukaemia
, hence has a track record. My very rough and amateurish synopsis: We all have a p53 gene which effectively fights cancer.
Paul123456
in
MPN Voice
7 years ago
Thoughts on PV/ET
There are a lot of new posters here (I’ve been here 3 months and feel like an old hand!) who are understandably nervous and worried. The dreaded cancer word and for many of us, our first real brush with our own mortality. However, there are two really important factors we need to focus on. PV and especially
There are a lot of new posters here (I’ve been here 3 months and feel like an old hand!) who are understandably nervous and worried. The dreaded cancer word and for many of us, our first real brush with our own mortality. However, there are two really important factors we need to focus on. PV and especially
Paul123456
in
MPN Voice
6 years ago
Food vs supplements
My oncologist agrees with Green tea and turmeric being beneficial for CLL but she prefers using turmeric powder in food and drinking green tea as opposed to supplements that may not have contents regulated and also contain questionable fillers etc. I had purchased 1 bottle of DECAFFEINATED green tea
My oncologist agrees with Green tea and turmeric being beneficial for CLL but she prefers using turmeric powder in food and drinking green tea as opposed to supplements that may not have contents regulated and also contain questionable fillers etc. I had purchased 1 bottle of DECAFFEINATED green tea
CLLmoxie
in
CLL Support
6 years ago
Recent blood tests
Hello everyone I went to see my haemo this morning to get results of latest raft of blood tests. My platelets have risen to 688, I'm Jak2 negative (is that good or bad?) and I'm positive for something called CALR, which he says can predispose someone to develop AML or myelofibrosis. H3e explained it
Hello everyone I went to see my haemo this morning to get results of latest raft of blood tests. My platelets have risen to 688, I'm Jak2 negative (is that good or bad?) and I'm positive for something called CALR, which he says can predispose someone to develop AML or myelofibrosis. H3e explained it
hall2
in
MPN Voice
6 years ago
Wife of CLL husband
My husband was diagnosed with CLL 7 years ago And went in remission after receiving chemo for six months The leukemia came back last year and now he is on the oral drug and he has had numerous respiratory infections and is receiving the IG factor monthly It is hard living like this not knowing if the
My husband was diagnosed with CLL 7 years ago And went in remission after receiving chemo for six months The leukemia came back last year and now he is on the oral drug and he has had numerous respiratory infections and is receiving the IG factor monthly It is hard living like this not knowing if the
Marn1
in
CLL Support
6 years ago
Tamiflu - WORKING!!!!! :) :)
I have been using nplate for ITP for 2 years, giving myself weekly injections. I was sick with the flu last week. This made my numbers drop even with my weekly injection of nplate to 36,000. I took Tamiflu for 5 days to kick the flu and exactly a week later my count went from 36,000 to 280,000. I
I have been using nplate for ITP for 2 years, giving myself weekly injections. I was sick with the flu last week. This made my numbers drop even with my weekly injection of nplate to 36,000. I took Tamiflu for 5 days to kick the flu and exactly a week later my count went from 36,000 to 280,000. I
ITP_September_2014
in
ITP Support Association
6 years ago
HCL and feeling unwell
Hi - I had chemo for HCL just over 5 years ago but this winter have been feeling run down again. I'm menopausal too which doesn't help with night sweats! I've been to the GP several times and they have done the usual bloods and they are all ok. But I still feel run down! No bruising though but have had
Hi - I had chemo for HCL just over 5 years ago but this winter have been feeling run down again. I'm menopausal too which doesn't help with night sweats! I've been to the GP several times and they have done the usual bloods and they are all ok. But I still feel run down! No bruising though but have had
emmieb-UK
in
Leukaemia Support
6 years ago
Ruxolitinib and high platelets
I have PV and been taking Hydroxycarbamide for a year and had many side effects and my blood counts are not being controlled. I came off Hydroxy 3 weeks ago and started on Ruxolitinib since when my platelet counts have kept going up - now 680. I wondered if anyone else has had this experience and how
I have PV and been taking Hydroxycarbamide for a year and had many side effects and my blood counts are not being controlled. I came off Hydroxy 3 weeks ago and started on Ruxolitinib since when my platelet counts have kept going up - now 680. I wondered if anyone else has had this experience and how
RosemaryHarper
in
MPN Voice
6 years ago
Vitamin question
I was diagnosed with CLL and 2015. I am 55 years old. Want to know if it’s OK to take a vitamin B complex.
I was diagnosed with CLL and 2015. I am 55 years old. Want to know if it’s OK to take a vitamin B complex.
Breezie44
in
CLL Support
6 years ago
Newly diagnosed CLL
I am a 63 yo female just diagnosed with Stage 0 CLL after routine annual CBC. Negative CT (done because of multifactorial fatigue) and mutation profile in good prognostic category. Watch and wait ... labs in 3 months. My plan now is to improve overall health in various ways (wt loss, optimal nutrition
I am a 63 yo female just diagnosed with Stage 0 CLL after routine annual CBC. Negative CT (done because of multifactorial fatigue) and mutation profile in good prognostic category. Watch and wait ... labs in 3 months. My plan now is to improve overall health in various ways (wt loss, optimal nutrition
CLLmoxie
in
CLL Support
6 years ago
I have CLL
I'm new I found out in Sept 2017 that I have CLL I'm 51 I am so scare I have been to two cancer doctor the first doctor said that I have had it for a while he didn't want to do any treatment right now. So my kids and husband wanted me to get a second opinion so I did and she said I was stage 1 and she
I'm new I found out in Sept 2017 that I have CLL I'm 51 I am so scare I have been to two cancer doctor the first doctor said that I have had it for a while he didn't want to do any treatment right now. So my kids and husband wanted me to get a second opinion so I did and she said I was stage 1 and she
LUCYLU51
in
CLL Support
6 years ago
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