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Hi folks - I've just been diagnosed though I think it's been going awhile - I'm 70 living in the wilds of Brittany and am trying to work out a regime which might deal with the problem naturally before I get sucked into pharma world. So far I've settled on raw garlic (just as well I'm on my own !) - milk
Hi folks - I've just been diagnosed though I think it's been going awhile - I'm 70 living in the wilds of Brittany and am trying to work out a regime which might deal with the problem naturally before I get sucked into pharma world. So far I've settled on raw garlic (just as well I'm on my own !) - milk
John-Searle
in
CLL Support
7 years ago
Ibrutinib severe bone pain
My father got cll from last year. We have tried FRC regimen which was not effective. His disease is associated with p53 mutation. Now it becane refractory cll. We have started ibrutinib from last week. One capsul each two days.(mon, wed, fri...) but from the first dose he experienced a severe bone pain
My father got cll from last year. We have tried FRC regimen which was not effective. His disease is associated with p53 mutation. Now it becane refractory cll. We have started ibrutinib from last week. One capsul each two days.(mon, wed, fri...) but from the first dose he experienced a severe bone pain
Aliyeh
in
CLL Support
7 years ago
FISH test result changed post chemo
My first post! My husband was diagnosed with CLL in 2004. He had 6 rounds of FC and achieved a good remission. In 2010 he relapsed and had FRC again 6 rounds, again a very good remission. He is IVG mutated and FISH test was negative to all deletions. He is now out of remission. Has just had a FISH test
My first post! My husband was diagnosed with CLL in 2004. He had 6 rounds of FC and achieved a good remission. In 2010 he relapsed and had FRC again 6 rounds, again a very good remission. He is IVG mutated and FISH test was negative to all deletions. He is now out of remission. Has just had a FISH test
lemsford
in
CLL Support
7 years ago
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Ibrutinib as frontline??
Hello everyone! Does anyone know why Ibrutinib is only available to CLL patients whose previous treatments have been unsuccessful? It was first made routinely available to leukaemia patients through the NHS in 2016, apparently after years of campaigning by Bloodwise, the cancer research charity. I've
Hello everyone! Does anyone know why Ibrutinib is only available to CLL patients whose previous treatments have been unsuccessful? It was first made routinely available to leukaemia patients through the NHS in 2016, apparently after years of campaigning by Bloodwise, the cancer research charity. I've
bendintheroad1
in
CLL Support
7 years ago
Still new to all of this!
I was recently, about six weeks ago, diagnosed with CML. So far I am responding REALLY well to the Gleevec and numbers are nearly to normal range. I was wondering, should I be wearing a medical alert bracelet?
I was recently, about six weeks ago, diagnosed with CML. So far I am responding REALLY well to the Gleevec and numbers are nearly to normal range. I was wondering, should I be wearing a medical alert bracelet?
AnnaBella82
in
Leukaemia Support
7 years ago
Final exercise update
hi i have now been referred to a long term conditions nurse whom has looked at all my history and what i am currently doing. the other nurse will now be spoken to as the new nurse feels i am doing plenty of exercise in the home just managing a home. i have been placed on a waiting list for hydrotherapy
hi i have now been referred to a long term conditions nurse whom has looked at all my history and what i am currently doing. the other nurse will now be spoken to as the new nurse feels i am doing plenty of exercise in the home just managing a home. i have been placed on a waiting list for hydrotherapy
Hidden
in
Lung Conditions Community Forum
7 years ago
Just about to get a transfusion to see if it helps the fatigue.
Hi Tried to post earlier but not sure it worked so this might be a repeat. I'm MF Jak2 + and ive been on ruxolitinib for nearly 3 months. Fatigue has been getting worse so Im having a blood transfusion. Thank you to the people on this site who shared their own experiences. It helped me make my own
Hi Tried to post earlier but not sure it worked so this might be a repeat. I'm MF Jak2 + and ive been on ruxolitinib for nearly 3 months. Fatigue has been getting worse so Im having a blood transfusion. Thank you to the people on this site who shared their own experiences. It helped me make my own
Rachelthepotter
in
MPN Voice
7 years ago
Sam
I am 81 yo man live in Southern California. I have a rare type of nh lymphoma , called lymphoplasmocytic lymphoma, w/o macroglobulinemia. Two weeks ago I started ibrutinib capsules but after 4 days i quit taking it after having violent side effects including disorientation, constipation, herd. Gases
I am 81 yo man live in Southern California. I have a rare type of nh lymphoma , called lymphoplasmocytic lymphoma, w/o macroglobulinemia. Two weeks ago I started ibrutinib capsules but after 4 days i quit taking it after having violent side effects including disorientation, constipation, herd. Gases
Sam-1
in
CLL Support
7 years ago
Just starting Ibrutinib
I was diagnosed with Waldenstrom's Macroglobulinemia 10 years ago and was successfully treated with R + CVP. The lymphoma remained in remission for 7 years until last November 2016 when I was diagnosed with Splenic Marginal Zone Lymphoma. A repeat of R + CVP (two sessions) was unsuccessful as was R +
I was diagnosed with Waldenstrom's Macroglobulinemia 10 years ago and was successfully treated with R + CVP. The lymphoma remained in remission for 7 years until last November 2016 when I was diagnosed with Splenic Marginal Zone Lymphoma. A repeat of R + CVP (two sessions) was unsuccessful as was R +
Steve41
in
CLL Support
7 years ago
Free online learning for GPs - Reducing the clinical interval between presentation, diagnosis, and referral, improves blood cancer outcomes
September is Blood Cancer Awareness Month. In the run up to September are you able to help us bring this free course to the attention of GPs in your area? The Royal College of General Practitioners (RCGP) plays a major role in keeping GPs informed to maximise positive health outcomes in local communities
September is Blood Cancer Awareness Month. In the run up to September are you able to help us bring this free course to the attention of GPs in your area? The Royal College of General Practitioners (RCGP) plays a major role in keeping GPs informed to maximise positive health outcomes in local communities
HAIRBEAR_UK
in
Leukaemia Support
7 years ago
Free online learning for GPs - Reducing the clinical interval between presentation, diagnosis, and referral improves blood cancer outcomes
September is Blood Cancer Awareness Month. In the run up to September are you able to help us bring this free course to the attention of GPs in your area? The Royal College of General Practitioners (RCGP) plays a major role in keeping GPs informed to maximise positive health outcomes in local communities
September is Blood Cancer Awareness Month. In the run up to September are you able to help us bring this free course to the attention of GPs in your area? The Royal College of General Practitioners (RCGP) plays a major role in keeping GPs informed to maximise positive health outcomes in local communities
HAIRBEAR_UK
Administrator
in
CLL Support
7 years ago
I'm new here
Hello! This is my first time signing in. I was diagnosed with Essential Thrombocythemia several years ago and since then have been diagnosed with Polycythemia vera. I am okay in the morning, but as the day goes on I find I am extremely fatigued and can barely function. I push through most times but
Hello! This is my first time signing in. I was diagnosed with Essential Thrombocythemia several years ago and since then have been diagnosed with Polycythemia vera. I am okay in the morning, but as the day goes on I find I am extremely fatigued and can barely function. I push through most times but
fran57paul
in
MPN Voice
7 years ago
Itp diagnosed 1 year ago
I was diagnosed exactly 1 year ago with a count of 5! I went on steroids then a chemo drug to which nothing helped - I had 3 ivig's which lasted for around 8/10 weeks then got put on nplate but with just a 250mg dose the platelets were still falling around 10 a week so now once every month I have a double
I was diagnosed exactly 1 year ago with a count of 5! I went on steroids then a chemo drug to which nothing helped - I had 3 ivig's which lasted for around 8/10 weeks then got put on nplate but with just a 250mg dose the platelets were still falling around 10 a week so now once every month I have a double
Lou1967
in
ITP Support Association
7 years ago
Polcythemia Questions and concerns... Need answers!!!
Hello my name is Tosha was diagnosed with PV November 2015, had alot of symptoms related to this and never was treated. I did research on this and found out without treatment my prognosis is 12 to 24 months... Now finally after three cancer centers and three primary doctor's and many others, I'm getting
Hello my name is Tosha was diagnosed with PV November 2015, had alot of symptoms related to this and never was treated. I did research on this and found out without treatment my prognosis is 12 to 24 months... Now finally after three cancer centers and three primary doctor's and many others, I'm getting
Toshabeatthis
in
MPN Voice
7 years ago
Omeprazole and Ruxolitinib
Hi all I have recently been changing from Hadroxycarbomide to Ruxolitinib. I also take lots of other drugs including 'omeprazole'. The problem I have is that the omeprazole seems to be less and less effective now and my 'acid reflux' is happening more regular. Does anyone have any experience of this
Hi all I have recently been changing from Hadroxycarbomide to Ruxolitinib. I also take lots of other drugs including 'omeprazole'. The problem I have is that the omeprazole seems to be less and less effective now and my 'acid reflux' is happening more regular. Does anyone have any experience of this
dave117
in
MPN Voice
7 years ago
Anyone have MDS too?
Has anyone else been diagnosed with MDS? (Myelodysplastic Syndrome) A side effect of MDS is chrinically extremely low platelets. My dad was diagnosed with MDS (mild) with 3.5% blasts in his bone marrow biopsy. His platelets are 10 now and we will be doing Nplate next, if needed. But that's for ITP and
Has anyone else been diagnosed with MDS? (Myelodysplastic Syndrome) A side effect of MDS is chrinically extremely low platelets. My dad was diagnosed with MDS (mild) with 3.5% blasts in his bone marrow biopsy. His platelets are 10 now and we will be doing Nplate next, if needed. But that's for ITP and
HappyHopeful
in
ITP Support Association
7 years ago
Question on Complete Stem Cell Transplant
Has anyone out there ever had a complete stem cell transplant? I will be going with my sister in law this coming week to Emory Hospital in Atlanta to find out the details. Would like to hear the good and the bad if you or if you know anyone who has had this done. She has CLL but has the P17 deletion
Has anyone out there ever had a complete stem cell transplant? I will be going with my sister in law this coming week to Emory Hospital in Atlanta to find out the details. Would like to hear the good and the bad if you or if you know anyone who has had this done. She has CLL but has the P17 deletion
evetom
in
CLL Support
7 years ago
Suej1968
I have had ET fourteen years and I was told by my haematologist that as I take my medication my life expectancy will be the same as anyone else. It took a few years to settle my medication but I have never felt ill. I have check ups and blood tests every 6ish weeks and I now have myelofibrosis as well
I have had ET fourteen years and I was told by my haematologist that as I take my medication my life expectancy will be the same as anyone else. It took a few years to settle my medication but I have never felt ill. I have check ups and blood tests every 6ish weeks and I now have myelofibrosis as well
Coradelphine
in
MPN Voice
7 years ago
CLL and Low estrogen treatments
Does anyone have any information about CLL and taking either Black Cohosh or Estrovera for low estrogen? Or any other insights into managing low estrogen and CLL? Thanks.
Does anyone have any information about CLL and taking either Black Cohosh or Estrovera for low estrogen? Or any other insights into managing low estrogen and CLL? Thanks.
cjspolyar
in
CLL Support
7 years ago
Minimal Residual Disease or Cure in MPNs? Rationales and perspectives on Combo Therapy with Interferon-alpha2 and Ruxolitinib
Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - http://bit.ly/2tBjHVs
Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - http://bit.ly/2tBjHVs
PVReporter
in
MPN Voice
7 years ago
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