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I am confused on what we can post on this site.
I feel bad for all people with Cll Leukemia. I sometimes posted things that were natural should we just never post anything like that. When I see someone post something that is natural it makes me feel better that maybe one of us will be healed from God naturally. I feel really bad after someone tells
I feel bad for all people with Cll Leukemia. I sometimes posted things that were natural should we just never post anything like that. When I see someone post something that is natural it makes me feel better that maybe one of us will be healed from God naturally. I feel really bad after someone tells
hmo1
in
CLL Support
6 years ago
ZAP-70 information
Hi All, I am posting from the Cafe Kerouac In Columbus OH awaiting another 12 week monitoring session for my extended Clinical Trial using PCI-32765 (Ibrutinib). It has been 6 years and 9 months since I started therapy. From an anxious post by an HU CLL forum member over a high ZAP-70 report I got inspired
Hi All, I am posting from the Cafe Kerouac In Columbus OH awaiting another 12 week monitoring session for my extended Clinical Trial using PCI-32765 (Ibrutinib). It has been 6 years and 9 months since I started therapy. From an anxious post by an HU CLL forum member over a high ZAP-70 report I got inspired
ThreeWs
in
CLL Support
6 years ago
Jakafi scare - MPN Research Foundation reply
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Paul123456
in
MPN Voice
6 years ago
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Should we be worried about this article in MPN Forum RE. Jakafi drug ????
Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article https://mpnforum.com/jakafi-warning-signs/ which I reads today about the trial drug Jakafi, which I currently take? Needless to say, it has
Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article https://mpnforum.com/jakafi-warning-signs/ which I reads today about the trial drug Jakafi, which I currently take? Needless to say, it has
chelsea1
in
MPN Voice
6 years ago
Navigating the Financial Maze for Cancer Survivorship Webinar by Leukemia & Lymphoma Society (LLS) USA
On behalf of The Leukemia & Lymphoma Society (LLS), we would like to announce a virtual lecture, Navigating the Financial Maze for Cancer Survivorship with featured speaker Joanna Fawzy Morales, Esq. Joanna Fawzy Morales, Esq. is a cancer rights attorney, author, speaker, and CEO of Triage Cancer
On behalf of The Leukemia & Lymphoma Society (LLS), we would like to announce a virtual lecture, Navigating the Financial Maze for Cancer Survivorship with featured speaker Joanna Fawzy Morales, Esq. Joanna Fawzy Morales, Esq. is a cancer rights attorney, author, speaker, and CEO of Triage Cancer
lankisterguy
Volunteer
in
CLL Support
6 years ago
Secondary Erythrocytosis
I have been diagnosed with secondary erythrocytosis. My gp said I had polychemia Vera. I’m seeing the haemotologist in April but I’m confused. Anybody clear this up for me ? Obviously I will ask . I had a blood clot and thrombophlebitis last week and is ongoing. Any advice ?
I have been diagnosed with secondary erythrocytosis. My gp said I had polychemia Vera. I’m seeing the haemotologist in April but I’m confused. Anybody clear this up for me ? Obviously I will ask . I had a blood clot and thrombophlebitis last week and is ongoing. Any advice ?
Kwebb
in
MPN Voice
6 years ago
83 year old dad diagnosed with stage 4 CLL/SLL. Doc wants to start Rituxan (once a week for 4weeks) then Ibrutinub. Does this seem right????
I have searched over and over, and I can’t find anywhere that Rituxan is first line therapy for stage 4 CLL/SLL. So confused!
I have searched over and over, and I can’t find anywhere that Rituxan is first line therapy for stage 4 CLL/SLL. So confused!
Jenette01
in
CLL Support
6 years ago
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
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
I'm New Here!
I went to see an Oncologist in the Winter of 2017 who confirmed I have, "Chronic
Lymphocytic
Leukemia
" CANCER. Ugh. I told my son's then and they accompanied me to an appointment, (That was supportive for me). The Oncologist stated, "You have the good Cancer, slow moving.".
I went to see an Oncologist in the Winter of 2017 who confirmed I have, "Chronic
Lymphocytic
Leukemia
" CANCER. Ugh. I told my son's then and they accompanied me to an appointment, (That was supportive for me). The Oncologist stated, "You have the good Cancer, slow moving.".
Hidden
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
Venetoclax plus Rituximab
http://www.cancernetwork.com/chronic-
lymphocytic
-
leukemia
/venetoclax-rituximab-improves-survival-relapsedrefractory-cll —Dennis, 71, Ibrutinib
http://www.cancernetwork.com/chronic-
lymphocytic
-
leukemia
/venetoclax-rituximab-improves-survival-relapsedrefractory-cll —Dennis, 71, Ibrutinib
Fant1924
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
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
Son diagnosed with Chronic Lymphocytic Leukemia
Hi all , I'm from Denmark Wisconsin, last June 2017 my 27 year old son was diagnosed with Chronic
Lymphocytic
Leukemia
, His Doctor's told us he probably had it for 3 years before being diagnosed with it, as he was very sick with pneumonia, sinus infections, bronchitis, and shingles, we brought him into
Hi all , I'm from Denmark Wisconsin, last June 2017 my 27 year old son was diagnosed with Chronic
Lymphocytic
Leukemia
, His Doctor's told us he probably had it for 3 years before being diagnosed with it, as he was very sick with pneumonia, sinus infections, bronchitis, and shingles, we brought him into
deters
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
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