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Anyone with Post ET/MF & Budd Chiari?
I'm 50 and was diagnosed with ET at 22. I took Hydroxyurea and Agreline (sp?) early on but after several DVT's, embolism and PE's I was put on Warafin and Allopurinol and basically monitored until my MF symptoms got "bad enough to treat". About 15 years ago I had blood clots form in my liver and 7
I'm 50 and was diagnosed with ET at 22. I took Hydroxyurea and Agreline (sp?) early on but after several DVT's, embolism and PE's I was put on Warafin and Allopurinol and basically monitored until my MF symptoms got "bad enough to treat". About 15 years ago I had blood clots form in my liver and 7
KADS
in
MPN Voice
6 years ago
CLL Society Weekly Alert
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=5ba78127-52a5-4bc2-af6c-33d6c0c6710a - Website The Basics Living Well with CLL - Hello, Friends and Supporters of the CLL Society. Blood Cancer Awareness Month takes place every September. The CLL Society joins 100s of other nonprofits
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=5ba78127-52a5-4bc2-af6c-33d6c0c6710a - Website The Basics Living Well with CLL - Hello, Friends and Supporters of the CLL Society. Blood Cancer Awareness Month takes place every September. The CLL Society joins 100s of other nonprofits
lankisterguy
Volunteer
in
CLL Support
6 years ago
Useful read for MF patients on or considering Interferon/Pegasys
Lengthy piece of research and I need to try to understand certain aspects better. It discusses impact of Inf on high risk mutations plus impact of multiple mutations re progression to AML. Of interest to Steve, INF reduces high risk mutations such as ASLX1 to same level as other non Driver mutations
Lengthy piece of research and I need to try to understand certain aspects better. It discusses impact of Inf on high risk mutations plus impact of multiple mutations re progression to AML. Of interest to Steve, INF reduces high risk mutations such as ASLX1 to same level as other non Driver mutations
Paul123456
in
MPN Voice
6 years ago
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Is Fenbendazole useful in treating CLL?
I'm relatively new to CLL, having been diagnosed a little over a year ago. I'm currently in a Wait and Watch status, but I've been curious about how we are progressing with treatments. In doing a little research unrelated to CLL I ran across an article from a man that had Stage 4 lung cancer and was
I'm relatively new to CLL, having been diagnosed a little over a year ago. I'm currently in a Wait and Watch status, but I've been curious about how we are progressing with treatments. In doing a little research unrelated to CLL I ran across an article from a man that had Stage 4 lung cancer and was
Cobra73
in
CLL Support
6 years ago
Light the Night Australia..Walk Locations
The Australian Leukaemia Foundation includes these special fund raising events between September and November annually. The different lantern colours have special meanings: [i]"Gold to remember loved ones lost to blood cancer, white for those diagnosed themselves and blue to show community support
The Australian Leukaemia Foundation includes these special fund raising events between September and November annually. The different lantern colours have special meanings: [i]"Gold to remember loved ones lost to blood cancer, white for those diagnosed themselves and blue to show community support
AussieNeil
Partner
in
CLL Support
6 years ago
DIAGNOSIS today cll/sll
Got my "official " diagnosis today....even though I full suspected it. I will have a baseline ct scan the end of the month then see my dr in Jan 2019. We will do blood draws every 4 mos. WBC actually reduced from 42.6 to 30.9 in 5 weeks and absolute lymphocytes reduced from 32 to 22. Still high but
Got my "official " diagnosis today....even though I full suspected it. I will have a baseline ct scan the end of the month then see my dr in Jan 2019. We will do blood draws every 4 mos. WBC actually reduced from 42.6 to 30.9 in 5 weeks and absolute lymphocytes reduced from 32 to 22. Still high but
Pat351v
in
CLL Support
6 years ago
Cll and chemo this is my first
I have cll my and now the test show bile duk dilated.my first treatment og chemo is this week my count is 154.000. Is tge bile duck another issue. Will i get sick from chemo i have no fever or night sweat. Sjould i get second opinion before chemo
I have cll my and now the test show bile duk dilated.my first treatment og chemo is this week my count is 154.000. Is tge bile duck another issue. Will i get sick from chemo i have no fever or night sweat. Sjould i get second opinion before chemo
christrom
in
CLL Support
6 years ago
Take part in a user-testing workshop for a new website around clinical trials.
Sense about Science is currently organising a user-testing workshop on a new website around stem cell therapy clinical trials, and they would like someone from our community to join them on the day.
It will be on Tuesday 4th September from 1pm to 3.30pm in their office at 14A, Clerkenwell Green,
Sense about Science is currently organising a user-testing workshop on a new website around stem cell therapy clinical trials, and they would like someone from our community to join them on the day.
It will be on Tuesday 4th September from 1pm to 3.30pm in their office at 14A, Clerkenwell Green,
Paul_Howard
LUPUS UK
in
LUPUS UK
6 years ago
Itp treatment
Hi . I developed Itp 5.5 month ago. I know I have it after a stressful episode of my life š Now , during this time I've been reading articles about Itp. They suggest to wait e years before doing splenectomy. Personally , I know a woman in my relatives who had it during pregnancy and took 2 years
Hi . I developed Itp 5.5 month ago. I know I have it after a stressful episode of my life š Now , during this time I've been reading articles about Itp. They suggest to wait e years before doing splenectomy. Personally , I know a woman in my relatives who had it during pregnancy and took 2 years
Lman96
in
ITP Support Association
6 years ago
Recent SLL/CLL Patient Question
Hello. I found out I have SLL/CLL earlier this year at 31. I had Rituxan treatment shortly after since I have neutropenia I can't seem to shake. I will save this for another post. My lymph nodes are visible but not huge yet. Since I have 11q I have read it can become a bulky disease. Not sure if they
Hello. I found out I have SLL/CLL earlier this year at 31. I had Rituxan treatment shortly after since I have neutropenia I can't seem to shake. I will save this for another post. My lymph nodes are visible but not huge yet. Since I have 11q I have read it can become a bulky disease. Not sure if they
DriedSeaweed
in
CLL Support
6 years ago
CAR T-Cell Developments in Lymphoma Dr. Ian Flinn Highlights
Flinn Highlights CAR T-Cell Developments in Lymphoma by Brandon Scalea Published: Thursday, Aug 09, 2018 - https://www.onclive.com/web-exclusives/flinn-highlights-car-tcell-developments-in-lymphoma?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%20NHL%20CC%20eNews%20%20Zydelig
Flinn Highlights CAR T-Cell Developments in Lymphoma by Brandon Scalea Published: Thursday, Aug 09, 2018 - https://www.onclive.com/web-exclusives/flinn-highlights-car-tcell-developments-in-lymphoma?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%20NHL%20CC%20eNews%20%20Zydelig
lankisterguy
Volunteer
in
CLL Support
6 years ago
Results of flow
What does this mean regarding cll? PATHOLOGICAL DIAGNOSIS A. Peripheral blood, flow only: - CD5+, CD23 + (subset) B-cell lymphoproliferative disorder, see flow
What does this mean regarding cll? PATHOLOGICAL DIAGNOSIS A. Peripheral blood, flow only: - CD5+, CD23 + (subset) B-cell lymphoproliferative disorder, see flow
Pat351v
in
CLL Support
6 years ago
Potential unrelated donor found
Hi All, A bit of an update. My local transplant unit has advised that a potential unrelated donor has been found for me on the German bone marrow registry. Looking at a mid September transplant, depending on the availability and health of my potential donor and me. A series of appointments have been
Hi All, A bit of an update. My local transplant unit has advised that a potential unrelated donor has been found for me on the German bone marrow registry. Looking at a mid September transplant, depending on the availability and health of my potential donor and me. A series of appointments have been
Simon96
in
MPN Voice
6 years ago
CLL Treatment Sequencing by Dr. Susan O'Brien
O'Brien Shares Overview of CLL Sequencing OncLive: by Brandon Scalea Published: Friday, Aug 10, 2018 ( poster comment; mostly a USA perspective) https://www.onclive.com/web-exclusives/obrien-shares-overview-of-cll-sequencing?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%
O'Brien Shares Overview of CLL Sequencing OncLive: by Brandon Scalea Published: Friday, Aug 10, 2018 ( poster comment; mostly a USA perspective) https://www.onclive.com/web-exclusives/obrien-shares-overview-of-cll-sequencing?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%
lankisterguy
Volunteer
in
CLL Support
6 years ago
FLAIR Trial 2018 update
This trial is comparing ibrutinib alongside rituximab with fludarabine, cyclophosphamide, rituximab and venetoclax for chronic lymphocytic leukaemia. This trial is for people who havenāt yet had treatment for their chronic lymphocytic leukaemia (CLL). The CLLSA supports this research. The Flair Trial
This trial is comparing ibrutinib alongside rituximab with fludarabine, cyclophosphamide, rituximab and venetoclax for chronic lymphocytic leukaemia. This trial is for people who havenāt yet had treatment for their chronic lymphocytic leukaemia (CLL). The CLLSA supports this research. The Flair Trial
Myrddin
in
CLL Support
6 years ago
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 couldnāt 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 couldnāt remember
Graham7694
in
MPN Voice
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 ā¦.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 ā¦.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
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