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Anyone with CLL and Myelodysplasia
Anyone with CLL and Myelodysplasia? A month ago I was diagnosed with Myelodysplasia after undergoing a biopsy when I was at the end of the Venetoclax treatment.
Anyone with CLL and Myelodysplasia? A month ago I was diagnosed with Myelodysplasia after undergoing a biopsy when I was at the end of the Venetoclax treatment.
Priss69
in
CLL Support
4 months ago
Transplant Route
Hi everyone. I was diagnosed with primary MF 9 years ago and have been relatively well managed on Ruxolitinib for most of that time. Recently however my platelets have been consistently low, 37, 56, 59 and about same now. My spleen has enlarged again and I have been put on a reduced dose of Ruxolitinib
Hi everyone. I was diagnosed with primary MF 9 years ago and have been relatively well managed on Ruxolitinib for most of that time. Recently however my platelets have been consistently low, 37, 56, 59 and about same now. My spleen has enlarged again and I have been put on a reduced dose of Ruxolitinib
Cazbolac
in
MPN Voice
4 months ago
GP neglect
Her diagnosis CMML a blood disorder linked to
leukaemia
. They have still caught it early but it could have been a very different outcome. So if you are not happy with your test results or you are having symptoms of anything keep pushing your GP.
Her diagnosis CMML a blood disorder linked to
leukaemia
. They have still caught it early but it could have been a very different outcome. So if you are not happy with your test results or you are having symptoms of anything keep pushing your GP.
Shenow
in
Thyroid UK
4 months ago
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JAK2 Allele Frequency/Burden
I am a 69-year-old female and was diagnosed with polycythemia vera in November 2023. I have been taking hydroxyurea since the middle of November it has helped my numbers and my symptoms. I am seeing a very reputable oncologist/hematologist - there are no MPN specialist in my area. I am JAK-2 positive
I am a 69-year-old female and was diagnosed with polycythemia vera in November 2023. I have been taking hydroxyurea since the middle of November it has helped my numbers and my symptoms. I am seeing a very reputable oncologist/hematologist - there are no MPN specialist in my area. I am JAK-2 positive
FlannelPJs
in
MPN Voice
5 months ago
March 2023 Treatment Update Webinars
THIS WEEK: ‘Latest advances in the treatment of acute myeloid
leukaemia
(AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic
leukaemia
(CLL)’ - Monday 27th @ 7pm ‘Latest advances in the treatment of chronic myeloid
leukaemia
(CML)’ - Tuesday
THIS WEEK: ‘Latest advances in the treatment of acute myeloid
leukaemia
(AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic
leukaemia
(CLL)’ - Monday 27th @ 7pm ‘Latest advances in the treatment of chronic myeloid
leukaemia
(CML)’ - Tuesday
LCAlex
Administrator
in
Leukaemia CARE
1 year ago
GVHD and skin dryness.
Unfortunately I have chronic graft versus host desiese of the skin and have controlled it with a steroid cream since my ASCT a year and a half ago. My only issue currently is that I find it hard to look after the skin on my hands and feet that are dry and chapped. I have used quite a few emoluments
Unfortunately I have chronic graft versus host desiese of the skin and have controlled it with a steroid cream since my ASCT a year and a half ago. My only issue currently is that I find it hard to look after the skin on my hands and feet that are dry and chapped. I have used quite a few emoluments
Kraskie1915
in
CLL Support
5 months ago
PV and AMD?
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
sbs_patient
in
MPN Voice
6 months ago
itchy skin
Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could recommend a cream that would help. I take a high dose fexofenadine before water but it doesnt really help.I asked my GP,who prescribed a tube
Hi all, I have this terrible itchy skin,mostly arms and legs,after any contact with water,apart from the swimming pool,strangely,and wondered if anyone could recommend a cream that would help. I take a high dose fexofenadine before water but it doesnt really help.I asked my GP,who prescribed a tube
Nursey30
in
MPN Voice
6 months ago
Has anyone had a Jak2 Blood Test for blood disorders?
Its quite scary reading up on it as its mostly about Bone Marrow cancers &
Leukaemia
etc. Has anyone else come across this before. I'm not too concerned as i've had high Platelets for so long.
Its quite scary reading up on it as its mostly about Bone Marrow cancers &
Leukaemia
etc. Has anyone else come across this before. I'm not too concerned as i've had high Platelets for so long.
Otto11
in
NRAS
1 month ago
Ruxolitinib is intolerant, what should I do
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
I started taking Ruxolitinib at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now. Maybe it's because my situation is worse, because I've been feeling like I have PMF since 2012, but I wasn't diagnosed or intervened until 2017 when
merlisa
in
MPN Voice
6 months ago
Just diagnosed with 4.0 cm aneurysm of ascending aorta and severe calcification
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Wewo01
in
MPN Voice
6 months ago
New Treatment Guidelines to Chronic Lymphocytic Leukemia (CLL): Latest advances and emerging treatments.
The Leukemia & Lymphoma Society of Canada recently presented this webinar that I thought was well done and would be of interest to members of this group. To watch the recording of the presentation, follow this link: https://zoom.us/rec/share/n-rsSAwoRlbIj2t2a4IQyN4JKBRAkp1thAGueR0MWS6Vt7lgVFGXpglJ-GyzIyda.H_TslN1eLCB_bs-Y
The Leukemia & Lymphoma Society of Canada recently presented this webinar that I thought was well done and would be of interest to members of this group. To watch the recording of the presentation, follow this link: https://zoom.us/rec/share/n-rsSAwoRlbIj2t2a4IQyN4JKBRAkp1thAGueR0MWS6Vt7lgVFGXpglJ-GyzIyda.H_TslN1eLCB_bs-Y
Northland
in
CLL Support
6 months ago
Tinituus Quite in the morning
I believe my T is stress related having one of my children go through
leukaemia
treatment along with work Ect. I have read that muscle tension and stress can be a big contributor.
I believe my T is stress related having one of my children go through
leukaemia
treatment along with work Ect. I have read that muscle tension and stress can be a big contributor.
Marsh3l
in
Tinnitus UK
2 months ago
Imetelstat Users?
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
Hi All, I have Myelofibrosis and have been taking Jakavi for about 3 years, and it has been pretty successful in suppressing my symptoms. Unfortunately my symptoms are slowly returning, my spleen has enlarged to 215mm and a bone marrow biopsy has shown that the fibrosis is now pretty advanced. I
TimGS
in
MPN Voice
6 months ago
cancer in blood 6 months after STC
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
Hi everyone, Goodness me a lot has happened in the 2 years since my last post. In April 2022, I was finally diagnosed with MF. It is my MPL gene that is defective. I was informed very soon thereafter that I was ‘high risk’ and was a suitable candidate for a SCT. I received the transplant in May this
PiperAlfie
in
CLL Support
6 months ago
Anyone near Dorking in Surrey who’d like to meet up?
Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the foreseeable future. I’ll have a toehold in Edinburgh , too (long story). I’m being treated at the Royal Marsden Hospital in Sutton (another long story
Hi. I’ve had a diagnosis of PMF for over seven years now, and it looks as tho I’ll need to be based near Dorking, in Surrey ( my family home) for the foreseeable future. I’ll have a toehold in Edinburgh , too (long story). I’m being treated at the Royal Marsden Hospital in Sutton (another long story
Gipsy123
in
MPN Voice
6 months ago
Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed. In the TRANSFORM-1 trial, the combination of the BCL-XL/BCL-2 inhibitor navitoclax
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (Jakafi) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed. In the TRANSFORM-1 trial, the combination of the BCL-XL/BCL-2 inhibitor navitoclax
PhysAssist
in
MPN Voice
6 months ago
besremi or jakafi
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
Laluna5683
in
MPN Voice
7 months ago
Post PV Myelofibrosis - One Year Update
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken off Besremi and got bimonthly CBCs. I had no other symptoms. A recent blood test showed 'normal for me' blood counts - platelets in the 300s,
marlenablue
in
MPN Voice
7 months ago
Rate of Decrease in RBC Count
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are there any resources that provide information on the rate I could expect my RBC count to go down? 100K/month, 50K/month, etc. Thanks! hsdale3
hsdale3
in
MPN Voice
7 months ago
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