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Lymphocytic leukemia
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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
7 months ago
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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
root canals
hi all , I have been on the W and W program. My blood dis-order was discovered in 2019. I referred to it as a blood disorder as they still haven’t taken a bone marrow sample to confirm that it’s truly CLL. I am curious if anyone in the group has tried removing any old root canals to see if it
hi all , I have been on the W and W program. My blood dis-order was discovered in 2019. I referred to it as a blood disorder as they still haven’t taken a bone marrow sample to confirm that it’s truly CLL. I am curious if anyone in the group has tried removing any old root canals to see if it
Jrugg
in
CLL Support
1 day ago
Puzzled
Hi folks! Hope we're all travelling well. Can I tap into your collective wisdom and experience? I've just come back from my regular check up with the CLL specialist. My ALC has gone from 29 to 53 in 6 months, or 91% of the blood count. Before then, it was steadily rising, but dropping at intervals. The
Hi folks! Hope we're all travelling well. Can I tap into your collective wisdom and experience? I've just come back from my regular check up with the CLL specialist. My ALC has gone from 29 to 53 in 6 months, or 91% of the blood count. Before then, it was steadily rising, but dropping at intervals. The
Guffy
in
CLL Support
4 days ago
Re-inoculate?
Hello you wonderful and oh-so-knowledgeable folks! This is a good-news story. After 11 months on a zanu-obin-venetoclax trial I've been in remission for 3 years. AND a lymphocyte subset test suggests that my B cells are coming back! Now here's my question: while I was on treatment and in the past
Hello you wonderful and oh-so-knowledgeable folks! This is a good-news story. After 11 months on a zanu-obin-venetoclax trial I've been in remission for 3 years. AND a lymphocyte subset test suggests that my B cells are coming back! Now here's my question: while I was on treatment and in the past
mouseandchair
in
CLL Support
8 days ago
CLL/CML treatment update
Hi All, Thank you for your passed and continuing help and support. Been taking dasatsnib since 2018 or 2019; with 1 incidence of Pleural effusion/thoracenticis, etc., in 2021. —that’s when I switched to Dr Cortes. zwent from 100mg to 20. For last 2-3 years. Dx’d in 2014. I have CLL and CML simultaneously
Hi All, Thank you for your passed and continuing help and support. Been taking dasatsnib since 2018 or 2019; with 1 incidence of Pleural effusion/thoracenticis, etc., in 2021. —that’s when I switched to Dr Cortes. zwent from 100mg to 20. For last 2-3 years. Dx’d in 2014. I have CLL and CML simultaneously
tedrog
in
CLL Support
8 days ago
Importance of CLL Specialist
This excellent study was just published. Why should you get a CLL specialist? My community oncologist gave me a fish and a flow test and told me that I wouldn’t need treatment for 3-5 years. He didn’t test for IGVH and didn’t know that there is a specific TP53 test. My CLL specialist tested for 500 mutations
This excellent study was just published. Why should you get a CLL specialist? My community oncologist gave me a fish and a flow test and told me that I wouldn’t need treatment for 3-5 years. He didn’t test for IGVH and didn’t know that there is a specific TP53 test. My CLL specialist tested for 500 mutations
PennyLane2024
in
CLL Support
10 days ago
Complete Remission
My Complete Blood Count (CBC) results state the normal range for Lymphocytes is 850-3900 cells/uL. The NCCN CLL guidelines for Complete Remission (CR) states Lymphocytes must be less than 5000 cells/uL. Why is 5000 cells/uL an acceptable NCCN CLL CR level for Lymphocytes when the maximum for the Complete
My Complete Blood Count (CBC) results state the normal range for Lymphocytes is 850-3900 cells/uL. The NCCN CLL guidelines for Complete Remission (CR) states Lymphocytes must be less than 5000 cells/uL. Why is 5000 cells/uL an acceptable NCCN CLL CR level for Lymphocytes when the maximum for the Complete
leftysfsl1945
in
CLL Support
11 days ago
Canadian SCIG and IVIG study
The most common indication was chronic
lymphocytic
leukemia
(CLL) (N = 52). IgRT reduced the average annual number of infections by 82.6%, emergency room (ER) visits by 84.6%, and hospitalizations by 83.3%. Overall, 84.6% of patients reported their health as better compared to before IgRT.
The most common indication was chronic
lymphocytic
leukemia
(CLL) (N = 52). IgRT reduced the average annual number of infections by 82.6%, emergency room (ER) visits by 84.6%, and hospitalizations by 83.3%. Overall, 84.6% of patients reported their health as better compared to before IgRT.
SeymourB
in
CLL Support
7 months ago
Moving toward disease modification in polycythemia vera
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free, treatment approach using time-limited, disease-modifying treatment modalities early in the disease course, which could ultimately affect the
Manouche
in
MPN Voice
7 months ago
lymphocytic leucocytosis
I have CLL diagnosed a year ago, just had my bloods done last week, the results have come back with lymphocytic leucocytosis does anyone know if this is a bad thing not heard if this before. Donnax
I have CLL diagnosed a year ago, just had my bloods done last week, the results have come back with lymphocytic leucocytosis does anyone know if this is a bad thing not heard if this before. Donnax
PusscatsGoodies
in
CLL Support
26 days ago
Travel insurance covering chronic lymphocytic leukemia
Is there any affordable traveling insurance covering chronic
lymphocytic
leukemia
CLL?
Is there any affordable traveling insurance covering chronic
lymphocytic
leukemia
CLL?
Louis33
in
CLL Support
1 year ago
New DX
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
I am a 76 yo woman. I was DX in 2016 and was in a trial at MD Anderson from 2017-2019. I achieved UMRD at the end of the trial of Ibrutinib and Venetoclax. I remained in total remission until my first visit after my husband died from Alzheimer’s in Oct 2021. Since then it’s been downhill. Dr Wierda
pkpayne
in
CLL Support
2 months ago
A recent consultation with a CLL specialist, and confirmation of genetic markers
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
Sagarcanada
in
CLL Support
2 months ago
Xpo1 significance
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
Not been active for a while as my wife is on watch and wait since initially being diagnosed two years ago at 41.Eric blood panels have come back with Xpo1 mutation which we are told significantly increases the chances of needing treatment. Going through the details we got but there seems to be a trial
NewCll
in
CLL Support
2 months ago
Modbury123
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Modbury123
in
MPN Voice
7 months ago
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