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TTI 621 trial
Refractory, 3rd time after 10 mos ibrutinib. Now enrolled in clinical trial w Trillium's TTI 621, expansion phase, no rituxan. My lymph nodes after week three are growing, not shrinking. Any experience w this drug? Best to all. Thank you
Refractory, 3rd time after 10 mos ibrutinib. Now enrolled in clinical trial w Trillium's TTI 621, expansion phase, no rituxan. My lymph nodes after week three are growing, not shrinking. Any experience w this drug? Best to all. Thank you
MelindaBates
in
CLL Support
7 years ago
Jona AML
My son Jonathan 33 yrs old has AML. Is now relapsed after Stem Cell transplant and also has leukemia tumours in his skin and left eye. does any know of 't-cell' treatments /trials in the uk or any other treatments for relapsed AML.He is currently having more chemo to try and achieve remission again
My son Jonathan 33 yrs old has AML. Is now relapsed after Stem Cell transplant and also has leukemia tumours in his skin and left eye. does any know of 't-cell' treatments /trials in the uk or any other treatments for relapsed AML.He is currently having more chemo to try and achieve remission again
Strawson
in
Leukaemia Support
7 years ago
Newly diagnosed Cll B cell
Hi I was recently diagnosed with Cll B cell I have deletion of the Tp53 and 17p13.1 I am very confused very uncertain and all the info I'm reading I don't really understand. Although I know my Fish test results are unfavorable. Any advise would be greatly appreciated. Stacy
Hi I was recently diagnosed with Cll B cell I have deletion of the Tp53 and 17p13.1 I am very confused very uncertain and all the info I'm reading I don't really understand. Although I know my Fish test results are unfavorable. Any advise would be greatly appreciated. Stacy
StacyA
in
CLL Support
7 years ago
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Mum
Hi my name is melissa and my mum was diagnosed with acute lymphoblastic luekaeimia she has started her induction chemotherapy plus a trial but the trial has left her with liver damage and she has now been rushed bk in with a infection does things get any better or will this be it now for the rest of
Hi my name is melissa and my mum was diagnosed with acute lymphoblastic luekaeimia she has started her induction chemotherapy plus a trial but the trial has left her with liver damage and she has now been rushed bk in with a infection does things get any better or will this be it now for the rest of
Melza27
in
Leukaemia Support
7 years ago
FCR, IBRUTINIB, VENETOCLAX what next...Stem Cell or CAR-T
Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL? We started V at the end of Feb. 2017 (as I posted our experience
Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL? We started V at the end of Feb. 2017 (as I posted our experience
NMMP
in
CLL Support
7 years ago
Should I be asking for ruxolitinib?
My haematologist said the long term plan was to get me on Ruxolitinib and I'm wondering whether I should be pushing for it or just leaving it to his judgement. I had Ploycythaemia Vera for 27 years ( diagnosed at age 47) and ,besides some sort of radioactive injection in the early years, lived well on
My haematologist said the long term plan was to get me on Ruxolitinib and I'm wondering whether I should be pushing for it or just leaving it to his judgement. I had Ploycythaemia Vera for 27 years ( diagnosed at age 47) and ,besides some sort of radioactive injection in the early years, lived well on
Fika500
in
MPN Voice
7 years ago
treatment refusal ruxolitinib
HI, my partner was diagnosed with primary mf at the beginning of January. He was categorised as low risk. His first scan in February showed a spleen size of 23 cm. He has recently been suffering from significant localised spleen pain and acute referred pain on the point of his shoulder. He has had
HI, my partner was diagnosed with primary mf at the beginning of January. He was categorised as low risk. His first scan in February showed a spleen size of 23 cm. He has recently been suffering from significant localised spleen pain and acute referred pain on the point of his shoulder. He has had
afonog
in
MPN Voice
7 years ago
IBD inflammatory bowel desiese
Hi my son was diagnosed with IBD 2 months ago and he is remicad fussion every two months Any suggestions please advice Best regards
Hi my son was diagnosed with IBD 2 months ago and he is remicad fussion every two months Any suggestions please advice Best regards
nabihaoun
in
Lung Conditions Community Forum
7 years ago
Questions on imatinib
I was diagnosed with CML in December 2016. I have been on Imatinib since January and am responding very well apart from a few side effects. Swollen eyes, lower legs and night sweats. I got over nausea and acute tiredness quickly. I was wondering if any one else has my problems and if so how long it could
I was diagnosed with CML in December 2016. I have been on Imatinib since January and am responding very well apart from a few side effects. Swollen eyes, lower legs and night sweats. I got over nausea and acute tiredness quickly. I was wondering if any one else has my problems and if so how long it could
Katesilgrim
in
Leukaemia Support
7 years ago
Myelofibrosis
Hi All I haven't posted on here for a while. My husband has Myloefibrosis his energy level is really bad - he has lots of pain in his stomach both sides even though Drs removed his spleen he says his stomach feels like it's going to explode. .His night sweats are awful and now he has started getting
Hi All I haven't posted on here for a while. My husband has Myloefibrosis his energy level is really bad - he has lots of pain in his stomach both sides even though Drs removed his spleen he says his stomach feels like it's going to explode. .His night sweats are awful and now he has started getting
Hidden
in
MPN Voice
7 years ago
CLL / P17 with Mutation
My sister in law who is 60 yrs. old has been diagnosed with CLL / P17 deletion with mutation. She has BWC of 213,000 and swollen lymph nodes. She was put on Hydrea that brought it down to 177,000 then they added Imbruvica. Hopefully this will bring it down until she can have a complete stem cell transplant
My sister in law who is 60 yrs. old has been diagnosed with CLL / P17 deletion with mutation. She has BWC of 213,000 and swollen lymph nodes. She was put on Hydrea that brought it down to 177,000 then they added Imbruvica. Hopefully this will bring it down until she can have a complete stem cell transplant
evetom
in
CLL Support
7 years ago
Patient Power's Webinar Replay
Hi all, Andrew Schorr, a CLL patient and founder of Patient Power hosted a live webinar on Tuesday about blood test results. If you weren't able to watch it live, the replay is now available! See below for description and link! (Note- you will need to join the Patient Power community to watch the video
Hi all, Andrew Schorr, a CLL patient and founder of Patient Power hosted a live webinar on Tuesday about blood test results. If you weren't able to watch it live, the replay is now available! See below for description and link! (Note- you will need to join the Patient Power community to watch the video
tclementi
in
CLL Support
7 years ago
Celebrating two years online with our 7th CLL Tribune Newsletter
I need to start by saying thank you. This issue of The CLL Tribune (http://www.cllsociety.org/newsletter/) is our 7th quarterly newsletter. I am proud to say it marks two years since the CLL Society has had a web presence. This issue includes our Basic section where I do the math on how much CLL we have
I need to start by saying thank you. This issue of The CLL Tribune (http://www.cllsociety.org/newsletter/) is our 7th quarterly newsletter. I am proud to say it marks two years since the CLL Society has had a web presence. This issue includes our Basic section where I do the math on how much CLL we have
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
Essential Thrombocythemia
Hi, I'm Wilma and I have Essential Thrombocythemia I was diagnosed in 2013. I still don't know very much about this disease. I know I sweat a lot. Get hot fast. Feel tired all the time!
Hi, I'm Wilma and I have Essential Thrombocythemia I was diagnosed in 2013. I still don't know very much about this disease. I know I sweat a lot. Get hot fast. Feel tired all the time!
Wilma66
in
MPN Voice
7 years ago
Does anyone have trouble with bloat after eating?
I think I have no HCL acid in my stomach. Even a cup of tea or soup bloats me. Is this part of lupus? Or some unrelated digestive problem? OH my! If one more thing goes wrong with me.... last night I could hardly climb the stairs to go to bed. I was exhausted, my legs hurt. I told my husband I need
I think I have no HCL acid in my stomach. Even a cup of tea or soup bloats me. Is this part of lupus? Or some unrelated digestive problem? OH my! If one more thing goes wrong with me.... last night I could hardly climb the stairs to go to bed. I was exhausted, my legs hurt. I told my husband I need
Natura
in
LUPUS UK
7 years ago
Combination therapy for our CLL
Hi, This week, I am sharing a video of Dr. Jennifer Brown from Dana Farber Cancer Institute where she discusses the possible next steps in combination treatment strategies for chronic lymphocytic leukemia (CLL). You can read my summary and watch the interview here: http://cllsociety.org/2017/03/combination-therapies-cll
Hi, This week, I am sharing a video of Dr. Jennifer Brown from Dana Farber Cancer Institute where she discusses the possible next steps in combination treatment strategies for chronic lymphocytic leukemia (CLL). You can read my summary and watch the interview here: http://cllsociety.org/2017/03/combination-therapies-cll
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
Answer
No Georgia. I didn't have preeclampsia! Was a normal pregnancy and an absolute normal labor. During my pregnancy my platelets were 250K. After two weeks after delivery the bruises appeared from nowhere. I was founded with 5K platelets. Nothing worked only Nplate. You're right, Nplate is given in "mcg
No Georgia. I didn't have preeclampsia! Was a normal pregnancy and an absolute normal labor. During my pregnancy my platelets were 250K. After two weeks after delivery the bruises appeared from nowhere. I was founded with 5K platelets. Nothing worked only Nplate. You're right, Nplate is given in "mcg
Deniss
in
ITP Support Association
7 years ago
Myelofibrosis and platelets
Hi my husband has has MF for nearly seven years now, on transfusions 3 units every 2 weeks. His platelet level has slowly gone down and is now at 12 does anyone else have this problem.
Hi my husband has has MF for nearly seven years now, on transfusions 3 units every 2 weeks. His platelet level has slowly gone down and is now at 12 does anyone else have this problem.
ardpatrick
in
MPN Voice
7 years ago
Help!!! Incorrect diagnosis???
I had a nodal biopsy in January that said I have SLL, it was confirmed by two different doctors. My dr is at MD Anderson and ran every test under the sun. He told me I have stage IV SLL. I then decided to seek treatment closer to home and went to OSU James cancer center where I was told by a Leukemia
I had a nodal biopsy in January that said I have SLL, it was confirmed by two different doctors. My dr is at MD Anderson and ran every test under the sun. He told me I have stage IV SLL. I then decided to seek treatment closer to home and went to OSU James cancer center where I was told by a Leukemia
jenxgen
in
CLL Support
7 years ago
Chlorambucil ( Leukeran)
My father was diagnosed with cll approx., 9yrs ago his health has been quiet good for an 82yr young. But then came the anemia, he had to go for a bone marrow biopsy the other week thanks to reading on here we asked for gas/air they had to go in 3 times but he just laughed through it no problem. He
My father was diagnosed with cll approx., 9yrs ago his health has been quiet good for an 82yr young. But then came the anemia, he had to go for a bone marrow biopsy the other week thanks to reading on here we asked for gas/air they had to go in 3 times but he just laughed through it no problem. He
Julie_kerry
in
CLL Support
7 years ago
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