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25 with ET
It is tough for me because I am only 25, I have my whole life in front of me and it is scary to even think that I might get
leukaemia
one day. There is so much i want to do....
It is tough for me because I am only 25, I have my whole life in front of me and it is scary to even think that I might get
leukaemia
one day. There is so much i want to do....
DoctorWithET
in
MPN Voice
4 years ago
Hibernation mode, painful hands and fuzzy eyesight.
Well as you can guess by the heading this is a bit of me at the moment. Probably not helping myself as I've been trying to do some embroidery at the moment in an effort to distract myself from other things namely the crazy itching. Maybe I'll get the sewing machines out and make myself some much needed
Well as you can guess by the heading this is a bit of me at the moment. Probably not helping myself as I've been trying to do some embroidery at the moment in an effort to distract myself from other things namely the crazy itching. Maybe I'll get the sewing machines out and make myself some much needed
Boudica1
in
LUPUS UK
4 years ago
Revolution of Chronic Lymphocytic Leukemia Therapy: the Chemo-Free Treatment Paradigm
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
Jm954
Administrator
in
CLL Support
4 years ago
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Anyone diagnosed SM-AHN?
Jak2 and D816v CKit positive. Anyone dx with both mutations? Systemic Madtocytosis and Polycythemia Vera
Jak2 and D816v CKit positive. Anyone dx with both mutations? Systemic Madtocytosis and Polycythemia Vera
shaks
in
MPN Voice
4 years ago
ET progressed to Myelofibrosis
I was discharged from hospital yesterday, originally admitted with shortness of breath but was soon diagnosed with Myelofibrosis. It was a huge shock as my haematologist has repeatedly told me that my falling blood counts could not be MF as my WBC were falling. I was treated by a different consultant
I was discharged from hospital yesterday, originally admitted with shortness of breath but was soon diagnosed with Myelofibrosis. It was a huge shock as my haematologist has repeatedly told me that my falling blood counts could not be MF as my WBC were falling. I was treated by a different consultant
Otterfield
in
MPN Voice
4 years ago
Time-to-progression after front-line FCR for CLL: a retrospective, multicohort study
It has been known for some time that FCR can produce very long remissions (perhaps cures) for some patients with mutated CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760129/ This study looks at unmutated patients and could be an important study for CLL patients or, on the other hand, completely
It has been known for some time that FCR can produce very long remissions (perhaps cures) for some patients with mutated CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760129/ This study looks at unmutated patients and could be an important study for CLL patients or, on the other hand, completely
Jm954
Administrator
in
CLL Support
4 years ago
Treating Asymptomatic Patients With Polycythemia Vera
Jerry L. Spivak, MD, discusses treating patients with polycythemia vera, which is a type of myeloproliferative neoplasm that can often derive from essential thrombocythemia, particularly among women. https://www.targetedonc.com/view/treating-asymptomatic-patients-with-polycythemia-vera
Jerry L. Spivak, MD, discusses treating patients with polycythemia vera, which is a type of myeloproliferative neoplasm that can often derive from essential thrombocythemia, particularly among women. https://www.targetedonc.com/view/treating-asymptomatic-patients-with-polycythemia-vera
Manouche
in
MPN Voice
4 years ago
Do all novel drugs "clear" CLL cells in blood, lymph nodes and bone marrow?
Do all novel drugs (non-chemotherapy) "clear" CLL cells in blood, lymph nodes and bone marrow? Or perhaps some drugs clear CLL cells only in blood, but are unable to get into bone marrow?
Do all novel drugs (non-chemotherapy) "clear" CLL cells in blood, lymph nodes and bone marrow? Or perhaps some drugs clear CLL cells only in blood, but are unable to get into bone marrow?
mantana
in
CLL Support
4 years ago
When CLL Meets COVID-19
When CLL Meets COVID-19 CLL Society is pleased to share with you the preeminent Spanish physician Prof. Dr. Emili Montserrat’s excellent commentary, recently published in BLOOD, reviewing two large studies on SARS-Cov2 infections in CLL patients. Prof. Dr. Emili Montserrat is one of the most prestigious
When CLL Meets COVID-19 CLL Society is pleased to share with you the preeminent Spanish physician Prof. Dr. Emili Montserrat’s excellent commentary, recently published in BLOOD, reviewing two large studies on SARS-Cov2 infections in CLL patients. Prof. Dr. Emili Montserrat is one of the most prestigious
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials!
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
has anyone been on exjade
You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker but my total iron combining capacity has also been rising steadily ( TIBC). I cannot reduce my transfusion dependency as I have gone down to 52
You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker but my total iron combining capacity has also been rising steadily ( TIBC). I cannot reduce my transfusion dependency as I have gone down to 52
skodaguy
in
MPN Voice
4 years ago
Leukaemia Care Webinar: Navigating changes as shielding pauses
Leukaemia
Care Webinar: Navigating changes as shielding pauses’ Date: 4th August, Time: 2.30 pm.
Leukaemia
Care Webinar: Navigating changes as shielding pauses’ Date: 4th August, Time: 2.30 pm.
Jm954
Administrator
in
CLL Support
4 years ago
(Imbruvica), Ibrutinib, To live or to die
Hi, I have a 50-years old friend who has had CLL since 2013. He had a relapse in early 2020. When he was close to death, he was hospitalized to a private hospital in Turkey and was prescribed Imbruvica from Janssen company. Since he does not have insurance, he bought the medicine himself and spent almost
Hi, I have a 50-years old friend who has had CLL since 2013. He had a relapse in early 2020. When he was close to death, he was hospitalized to a private hospital in Turkey and was prescribed Imbruvica from Janssen company. Since he does not have insurance, he bought the medicine himself and spent almost
Green202
in
CLL Support
4 years ago
Disease Flare During Temporary Interruption of Ibrutinib Therapy in Patients with Chronic Lymphocytic Leukemia ( CLL ) - Pseudo Richters
Several of us have reported our CLL symptoms have come roaring back after discontinuing Ibrutinib/imbruvica with even a few cases of what's been termed pseudo-Richters, where some patients appear to have even undergone unnecessary R-CHOP chemoimmunotherapy as our member Priss69 has reported:
Several of us have reported our CLL symptoms have come roaring back after discontinuing Ibrutinib/imbruvica with even a few cases of what's been termed pseudo-Richters, where some patients appear to have even undergone unnecessary R-CHOP chemoimmunotherapy as our member Priss69 has reported:
AussieNeil
Partner
in
CLL Support
4 years ago
Welcome
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
MFBMT2011
in
MPN Voice
4 years ago
Resistance to Ibrutinib
Hi everyone this is my first post. I'm looking for some advice, reassurance please. I'm tp53 mutated and have been on ibrutinib 7 months, which is not working.I saw my consultant on Thursday and the plan is to continue for another 3 months to see if it starts working. My lymphocytes remain at 300. Has
Hi everyone this is my first post. I'm looking for some advice, reassurance please. I'm tp53 mutated and have been on ibrutinib 7 months, which is not working.I saw my consultant on Thursday and the plan is to continue for another 3 months to see if it starts working. My lymphocytes remain at 300. Has
Reddg
in
CLL Support
4 years ago
CLL Treatments Today: What Should I Know? October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time
https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8acc3ddacd Saturday, October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time This 3-hour program will take you through a CLL 101, 201 and 301 class hosted by CLL patient advocates and experts from Cleveland Clinic and
https://mailchi.mp/patientpower.info/your-patient-powered-cll-news-1299504?e=8acc3ddacd Saturday, October 3, 2020 at 9:00 AM Pacific Time / 12:00 PM Eastern Time This 3-hour program will take you through a CLL 101, 201 and 301 class hosted by CLL patient advocates and experts from Cleveland Clinic and
lankisterguy
Volunteer
in
CLL Support
4 years ago
High red and white blood cells
My gp has mentioned
leukaemia
as a possible cause and also PV, i'm petrified, i'm still waiting on the JAK 2 gene test but I cant function at the moment with stress and worry, has anyone had this that can maybe tell me a little bit more about it.
My gp has mentioned
leukaemia
as a possible cause and also PV, i'm petrified, i'm still waiting on the JAK 2 gene test but I cant function at the moment with stress and worry, has anyone had this that can maybe tell me a little bit more about it.
nicky153
in
MPN Voice
4 years ago
Anyone have experience with Venclexta capped at 200 mg?
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
Flute117
in
CLL Support
4 years ago
MDS?
Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to anemia. Platelets have remained low normal but HCT have continued to drop. Anemia not iron related. Now Dr has mentioned BMB for MDS or post ET MF? What the h**? Is MDS still a MPN? Seems like opposite?
Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to anemia. Platelets have remained low normal but HCT have continued to drop. Anemia not iron related. Now Dr has mentioned BMB for MDS or post ET MF? What the h**? Is MDS still a MPN? Seems like opposite?
Kerri2
in
MPN Voice
4 years ago
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