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Myelofibrosis & Yransplant Symposium
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
MFBMT2011
in
MPN Voice
6 years ago
It's Official! Curing Patients Is Bad for Business! Milton Packer describes the end result of profit-dominated drug development
and-it-keeps-getting-pricier/2016/03/09/4fff8102-c571-11e5-a4aa-f25866ba0dc6_story.html The history of Gleevec is particularly relevant to us, as this was the first instance of a custom developed monoclonal antibody (like Rituxan) achieving success in changing the life expectancy of patients with Chronic Myelogenous
Leukaemia
and-it-keeps-getting-pricier/2016/03/09/4fff8102-c571-11e5-a4aa-f25866ba0dc6_story.html The history of Gleevec is particularly relevant to us, as this was the first instance of a custom developed monoclonal antibody (like Rituxan) achieving success in changing the life expectancy of patients with Chronic Myelogenous
Leukaemia
AussieNeil
Administrator
in
CLL Support
6 years ago
Ten days to watch, wait, worry? Campaign launch
During the campaign and coming months
Leukaemia
Care will be working with the UK clinical community and patient groups supporting blood cancer patients living on Watch and Wait, The outcome we hope, will be creation and implementation of improved clinical supportive care guidance for the Watch
During the campaign and coming months
Leukaemia
Care will be working with the UK clinical community and patient groups supporting blood cancer patients living on Watch and Wait, The outcome we hope, will be creation and implementation of improved clinical supportive care guidance for the Watch
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
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Why does everyone you talk to have arthritis?
I know someone who has
leukaemia
, their is no way I would presume to know how her body feels when she’s in pain or having treatment. Let us true arthritic individuals have our say. Having this disease is no fun and I’d like to be able to say this without everyone assuming they know how I feel.
I know someone who has
leukaemia
, their is no way I would presume to know how her body feels when she’s in pain or having treatment. Let us true arthritic individuals have our say. Having this disease is no fun and I’d like to be able to say this without everyone assuming they know how I feel.
Nicole2000
in
NRAS
6 years ago
How not to get your blood results .....
I have chronic lymphocyte
leukaemia
and it is quite important to me to study any progression in my disease Receptionist: You will have to ring the results line and it is closed Me: Yes, but actually the results line is no good for me as they are not clinicians and are merely going to say that I have
I have chronic lymphocyte
leukaemia
and it is quite important to me to study any progression in my disease Receptionist: You will have to ring the results line and it is closed Me: Yes, but actually the results line is no good for me as they are not clinicians and are merely going to say that I have
TAS50
in
Thyroid UK
6 years ago
More treatment confusion?!
Hi CLL'ers, I am very grateful for this forum. I'm on line a lot but this is the only place I go for CLL info. I saw my Dr. about a week ago and we have the same friendly debate-he wants to begin treatment and I don't. My white count is at 30 thousand, no doubling of the Absolute count, lots of fatigue
Hi CLL'ers, I am very grateful for this forum. I'm on line a lot but this is the only place I go for CLL info. I saw my Dr. about a week ago and we have the same friendly debate-he wants to begin treatment and I don't. My white count is at 30 thousand, no doubling of the Absolute count, lots of fatigue
lorna222
in
CLL Support
6 years ago
NEVER GIVE UP!
I’m a 71 year old female of Irish decent. I was diagnosed with CLL in 1991. It remained in remission until January 2017. My oncologist started me on IMBRUVICA (3 capsules, 140mg each) in March 2017. The only “side effect” was bone pain in the beginning. Dr. H assured me that it was temporary & was
I’m a 71 year old female of Irish decent. I was diagnosed with CLL in 1991. It remained in remission until January 2017. My oncologist started me on IMBRUVICA (3 capsules, 140mg each) in March 2017. The only “side effect” was bone pain in the beginning. Dr. H assured me that it was temporary & was
maowen46
in
CLL Support
6 years ago
Questions for consultant?
49 Years old, in UK (Yorkshire) Diagnosed 2 years ago, blood counts steadily rising. I am no longer working (As a p/t Teacher) due to fatigue. Started FCR Chemo due to fatigue (On Cycle 1) . No swollen lymph nodes etc but CT scan showed Spleen enlarged and lesions on Liver. Biopsy revealed CLL progression
49 Years old, in UK (Yorkshire) Diagnosed 2 years ago, blood counts steadily rising. I am no longer working (As a p/t Teacher) due to fatigue. Started FCR Chemo due to fatigue (On Cycle 1) . No swollen lymph nodes etc but CT scan showed Spleen enlarged and lesions on Liver. Biopsy revealed CLL progression
AntonMB
in
CLL Support
6 years ago
New potential therapeutic target for MF
Possible new breakthrough re MF. Early days but one to watch.... https://www.nature.com/articles/s41467-018-03627-9 “To summarize, using two murine models of myelofibrosis, we show that a specific HSP27 inhibitor, OGX-427, limits the progression of myelofibrosis by (i) reducing both spleen weight and
Possible new breakthrough re MF. Early days but one to watch.... https://www.nature.com/articles/s41467-018-03627-9 “To summarize, using two murine models of myelofibrosis, we show that a specific HSP27 inhibitor, OGX-427, limits the progression of myelofibrosis by (i) reducing both spleen weight and
Paul123456
in
MPN Voice
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
Administrator
in
Leukaemia CARE
6 years ago
Food, Glorious Food 🥘
Hello dear friends, Quite proud of myself 😉 Started this new antiacid, anti-inflammatory diet last week. It was time I started a new hobby, as I can’t do my embroidery anymore at least I can cook. It is also good for Bea and her post shingles chronic fatigue. And it keeps me active, shopping for strange
Hello dear friends, Quite proud of myself 😉 Started this new antiacid, anti-inflammatory diet last week. It was time I started a new hobby, as I can’t do my embroidery anymore at least I can cook. It is also good for Bea and her post shingles chronic fatigue. And it keeps me active, shopping for strange
Hidden
in
Lung Conditions Community Forum
6 years ago
Transplant in sight
It's been a while since I last posted but I finally feel that the transplant is in reach. Ibruitinib and Venetoclax combination is having an amazing impact with WBC now in the normal range at 8.90. Lymphocytes down to 5.90 and once they reach 4.50 or below, my bone marrow will be checked for % of CLL
It's been a while since I last posted but I finally feel that the transplant is in reach. Ibruitinib and Venetoclax combination is having an amazing impact with WBC now in the normal range at 8.90. Lymphocytes down to 5.90 and once they reach 4.50 or below, my bone marrow will be checked for % of CLL
KAS8
in
CLL Support
6 years ago
New to chemo. Why no choice?
I would have considered it only good practice to allow a relatively non-invasive prognosis for as long as it is effective, prior to putting me on this (apparently
leukaemia
risk) drug. It just seems too dicey for me. 10 days in ....
I would have considered it only good practice to allow a relatively non-invasive prognosis for as long as it is effective, prior to putting me on this (apparently
leukaemia
risk) drug. It just seems too dicey for me. 10 days in ....
JackLina
in
MPN Voice
6 years ago
Anyone have bizarre auto-immune issue connected to CLL?
Looking to see if anyone else out there has dx of CLL yet not the typical cll picture. I’m inquiring for my dearest friend whom was dx 3 years ago. Was w/w for 1.5 years, had to start treatment. Did ibrutinib, now started rutuxin.... multiple blood/platlets transfusions, nuelasta shots for extreme neutropenia
Looking to see if anyone else out there has dx of CLL yet not the typical cll picture. I’m inquiring for my dearest friend whom was dx 3 years ago. Was w/w for 1.5 years, had to start treatment. Did ibrutinib, now started rutuxin.... multiple blood/platlets transfusions, nuelasta shots for extreme neutropenia
Lauriesue4
in
CLL Support
6 years ago
Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....
That is why, eight and a half years after I was first diagnosed, I have decided to write about my
leukaemia
.
That is why, eight and a half years after I was first diagnosed, I have decided to write about my
leukaemia
.
romarin
in
CLL Support
6 years ago
Persistent infections and always unwell
It has been over a year since treatment, I am worried that the
leukaemia
has come back, not feeling so hopeful at the moment!! Does it ever go away?
It has been over a year since treatment, I am worried that the
leukaemia
has come back, not feeling so hopeful at the moment!! Does it ever go away?
Hopeful123
in
Leukaemia CARE
6 years ago
What is the best first-line treatment combination for CLL?
I had a quick look at NICE pathways (see https://pathways.nice.org.uk/pathways/blood-and-bone-marrow-cancers/lymphoid-
leukaemia
#content=view-index&path=view%3A/pathways/blood-and-bone-marrow-cancers/lymphoid-leukaemia.xml ).
I had a quick look at NICE pathways (see https://pathways.nice.org.uk/pathways/blood-and-bone-marrow-cancers/lymphoid-
leukaemia
#content=view-index&path=view%3A/pathways/blood-and-bone-marrow-cancers/lymphoid-leukaemia.xml ).
AdrianUK
in
CLL Support
6 years ago
Newly Diagnosed (9/2017) with PV and ET
I'm newly diagnosed with both PV and ET and still learning about the symptoms and treatments. Once diagnosed, my hematologist asked that I participate in a study of MPNs being conducted at UNM (University of New Mexico) Cancer Center. My hematologist has been very careful with treatment, slowly increasing
I'm newly diagnosed with both PV and ET and still learning about the symptoms and treatments. Once diagnosed, my hematologist asked that I participate in a study of MPNs being conducted at UNM (University of New Mexico) Cancer Center. My hematologist has been very careful with treatment, slowly increasing
bmboulanger
in
MPN Voice
6 years ago
How do you know that you are in remission?
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure
StarryRoo
in
Leukaemia CARE
6 years ago
Clinical Trial information
CLL specialist Dr. Kerry Rogers will present an important online or in person informational program focussing on Clinical Trials. This program will be streamed live online but you need to register. Register at cancer.osu.edu/JCFL in your browser or click this link https://cancer.osu.edu/patient-support
CLL specialist Dr. Kerry Rogers will present an important online or in person informational program focussing on Clinical Trials. This program will be streamed live online but you need to register. Register at cancer.osu.edu/JCFL in your browser or click this link https://cancer.osu.edu/patient-support
ThreeWs
in
CLL Support
6 years ago
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