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Navigating the Hidden Costs of Clinical Trials on Patient Power
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
lankisterguy
Volunteer
in
CLL Support
2 years ago
Save the date! Our first conference for over two years! We're very pleased to invite you to our conference in Glasgow later this month.
We are excited to announce that our first conference for over two years will be held in Glasgow.
Topic: 'Managing CLL in 2022- Treatment guidelines explained'
When:
Tuesday 18 October
Where:
Voco Grand Central, 99 Gordon Street, Glasgow, G1 3SF. The centre is within the
We are excited to announce that our first conference for over two years will be held in Glasgow.
Topic: 'Managing CLL in 2022- Treatment guidelines explained'
When:
Tuesday 18 October
Where:
Voco Grand Central, 99 Gordon Street, Glasgow, G1 3SF. The centre is within the
pkguk2
CLL Support Association
in
CLL Support
2 years ago
pre fibrotic myelofibrosis
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
JeniMac
in
MPN Voice
2 years ago
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PV and CML?
hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightly high. Could I have CML at the same time as PV. My hospital notes had CML?
hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightly high. Could I have CML at the same time as PV. My hospital notes had CML?
DougyW
in
MPN Voice
2 years ago
1st day on Ruxolitinib
The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily. im a bit nervous about it, as I gained a lot of weight with the other medication and shielding, I don’t want to gain more. I know I have to lose some weight (I’ve done it before and I’ll do it again
The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily. im a bit nervous about it, as I gained a lot of weight with the other medication and shielding, I don’t want to gain more. I know I have to lose some weight (I’ve done it before and I’ll do it again
wendycu
in
MPN Voice
2 years ago
Meet Henry
Spot Leukaemia News!!! Us and Leukaemia UK are excited to launch our new Spot Leukaemia video which aims to make the signs and symptoms the most memorable yet! Introducing Henry! He’s here to make the signs and symptoms of leukaemia memorable. In the video, you will see Henry the Macaw parrot as
Spot Leukaemia News!!! Us and Leukaemia UK are excited to launch our new Spot Leukaemia video which aims to make the signs and symptoms the most memorable yet! Introducing Henry! He’s here to make the signs and symptoms of leukaemia memorable. In the video, you will see Henry the Macaw parrot as
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
2 years ago
essential thrombocytosis
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have myelofibrosis which apparently is quite serious, can anyone help . Thanks.
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have myelofibrosis which apparently is quite serious, can anyone help . Thanks.
glyndale
in
MPN Voice
2 years ago
Fibrosis, Grade 0 does not mean None
In another thread we've been discussing cellularity and fibrosis. I've found an unexpected (to me) result in my study. None is not an answer, we all need some fibers of fibrosis to support the marrow. The MPN condition starts when "some" becomes "more". "Structural fibrils constitute a physiological
In another thread we've been discussing cellularity and fibrosis. I've found an unexpected (to me) result in my study. None is not an answer, we all need some fibers of fibrosis to support the marrow. The MPN condition starts when "some" becomes "more". "Structural fibrils constitute a physiological
EPguy
in
MPN Voice
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
Rapamycin
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
MDI55
in
MPN Voice
2 years ago
Second Malignancies Among Older Patients With Classical MPN Treated With Hydroxyurea
TAKE-HOME MESSAGE In this retrospective cohort study of 4023 patients aged ≥66 years with classical Philadelphia chromosome–negative myeloproliferative neoplasms (MPN), there was no significant difference in the incidence of solid or hematologic second malignancies in patients treated with hydroxyurea
TAKE-HOME MESSAGE In this retrospective cohort study of 4023 patients aged ≥66 years with classical Philadelphia chromosome–negative myeloproliferative neoplasms (MPN), there was no significant difference in the incidence of solid or hematologic second malignancies in patients treated with hydroxyurea
Manouche
in
MPN Voice
2 years ago
Does Covid boost ALS?
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
JDG45
in
CLL Support
2 years ago
A brief update post Venetoclax+Rituximab - treatment number 4
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Jm954
Administrator
in
CLL Support
2 years ago
See a Dermatologist On a Regular Basis, if possible.
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Vizilo
in
CLL Support
2 years ago
Doctor cannot fully diagnose without bone marrow biopsy and PET scan?
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
SunCalifornia
in
CLL Support
2 years ago
Study shows that over half of known human pathogenic diseases can be aggravated by climate change
Recently published in Nature https://www.nature.com/articles/s41558-022-01426-1 [i]"Here we carried out a systematic search for empirical examples about the impacts of ten climatic hazards sensitive to greenhouse gas (GHG) emissions on each known human pathogenic disease. We found that 58% (that is,
Recently published in Nature https://www.nature.com/articles/s41558-022-01426-1 [i]"Here we carried out a systematic search for empirical examples about the impacts of ten climatic hazards sensitive to greenhouse gas (GHG) emissions on each known human pathogenic disease. We found that 58% (that is,
bennevisplace
in
CLL Support
2 years ago
Need Urgent help for CAR-T therapy
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
nuji
in
CLL Support
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
Evosheld
I joined the Evosheld UK Facebook page where there is a strong campaign for the government to authorise Evusheld. We were asked to write to our MPs and ask for the question to raised on the House of Commons. I have written several letters to my MP and generally get a stock reply. Here is the latest
I joined the Evosheld UK Facebook page where there is a strong campaign for the government to authorise Evusheld. We were asked to write to our MPs and ask for the question to raised on the House of Commons. I have written several letters to my MP and generally get a stock reply. Here is the latest
kitchengardener2
in
CLL Support
2 years ago
CLL highly correlated to other cancers?
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
NixRose
in
CLL Support
2 years ago
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