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Lymphocytic leukemia
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Orthodontics Appointment cancelled for the 4th time
Had a text earlier from the hospital again cancelling my orthodontics appointment again for 4th time, I have avascular necrosis of both hip's and the pain seems to be getting worse each day also I have an inguinal hernia on the worst hip side adding insult to injury the pain is becoming unbearable it
Had a text earlier from the hospital again cancelling my orthodontics appointment again for 4th time, I have avascular necrosis of both hip's and the pain seems to be getting worse each day also I have an inguinal hernia on the worst hip side adding insult to injury the pain is becoming unbearable it
Hidden
in
MPN Voice
1 year ago
Hard Mass on my Spleen
My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help is life-changing for many people. I'm a 68 year old guy who was diagnosed with cll in 2014. My wbc's have been fairly stable since diagnosis
My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help is life-changing for many people. I'm a 68 year old guy who was diagnosed with cll in 2014. My wbc's have been fairly stable since diagnosis
Gooseman
in
CLL Support
1 year ago
Pelabresib With Ruxolitinib Shows Improvements in Patients With JAK Inhibitor-Naïve Myelofibrosis
For patients with myelofibrosis naïve to Janus kinase inhibitor (JAKi) therapy, treatment with pelabresib plus ruxolitinib was associated with durable improvements in spleen volume reduction (SVR), and other findings, in a recent phase 2 study. Study results were reported in the Journal of Clinical Oncology
For patients with myelofibrosis naïve to Janus kinase inhibitor (JAKi) therapy, treatment with pelabresib plus ruxolitinib was associated with durable improvements in spleen volume reduction (SVR), and other findings, in a recent phase 2 study. Study results were reported in the Journal of Clinical Oncology
PhysAssist
in
MPN Voice
1 year ago
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FDA Issues Complete Response Letter for Ruxolitinib Extended-Release Tablets
The Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) to Incyte regarding the New Drug Application (NDA) for ruxolitinib extended-release (XR) tablets for once-daily use in the treatment of certain types of myelofibrosis, polycythemia vera, and graft-vs-host disease (GVHD
The Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) to Incyte regarding the New Drug Application (NDA) for ruxolitinib extended-release (XR) tablets for once-daily use in the treatment of certain types of myelofibrosis, polycythemia vera, and graft-vs-host disease (GVHD
PhysAssist
in
MPN Voice
1 year ago
Shingles vaccine is now recommended in Australia for people aged ≥18 years who are immunocompromised
https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll (This is an unlocked post so those outside our community can also find it and read it on the internet.
https://healthunlocked.com/cllsupport/posts/148546478/vaccinations-for-people-with-chronic-
lymphocytic
-
leukemia
-cll-sll (This is an unlocked post so those outside our community can also find it and read it on the internet.
CLLerinOz
Administrator
in
CLL Support
1 year ago
MPN Specialized Care and Technology: Digital Health and Symptom Management
[i]
From our friends at Patient Empowerment network.
[/i] Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Register to join
[i]
From our friends at Patient Empowerment network.
[/i] Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Register to join
hunter5582
in
MPN Voice
1 year ago
Treatment of Richter's syndrome - ASH 2022 Education Program
[i]"ABSTRACT: Richter's syndrome (RS) is an aggressive histologic transformation of chronic
lymphocytic
leukemia
(CLL), most commonly to diffuse large B-cell lymphoma (DLBCL).
[i]"ABSTRACT: Richter's syndrome (RS) is an aggressive histologic transformation of chronic
lymphocytic
leukemia
(CLL), most commonly to diffuse large B-cell lymphoma (DLBCL).
CLLerinOz
Administrator
in
CLL Support
2 years ago
Webinar - What You Need To Know About Polycythemia Vera
[i]From our friends at MPN Advocacy & Education International. [/i]
A Conversation with MPN Specialists - What You Need To Know About Polycythemia Vera
Wednesday, April 12, 2023 11:30am-1:00pm EST Drs. Gaby Hobbs, Mass General, and Andrew Kuykendall, Moffitt Cancer Center, will focus their
[i]From our friends at MPN Advocacy & Education International. [/i]
A Conversation with MPN Specialists - What You Need To Know About Polycythemia Vera
Wednesday, April 12, 2023 11:30am-1:00pm EST Drs. Gaby Hobbs, Mass General, and Andrew Kuykendall, Moffitt Cancer Center, will focus their
hunter5582
in
MPN Voice
1 year ago
March 2023 Treatment Update Webinars
Our treatment update webinars are fast approaching! Webinar dates... 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
Our treatment update webinars are fast approaching! Webinar dates... 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
LCAlex
in
Leukaemia Support
1 year ago
HU and prefibrotic myelofibrosis
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
CLL Support
1 year ago
Hubby is in remission but still needs to take his A&V for an additional 8.5months.
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
spi3
in
CLL Support
1 year ago
Kidneys affected by Hydroxyurea?
Was admitted to hospital last week due to severely low sodium levels and creatinine levels were way off normal. Admitting diagnosis was acute kidney failure. Nephrologists were not sure what was causing the change in my kidney’s health. They wondered if the Hydroxyurea could be playing a part
Was admitted to hospital last week due to severely low sodium levels and creatinine levels were way off normal. Admitting diagnosis was acute kidney failure. Nephrologists were not sure what was causing the change in my kidney’s health. They wondered if the Hydroxyurea could be playing a part
KHardey
in
MPN Voice
1 year ago
Ichthyosis
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
Rando21
in
CLL Support
1 year ago
V + O , TP53 and p13
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
skipro
in
CLL Support
1 year ago
Managing Life With an MPN | What You Need to Know
Looks like it may be an interesting Webinar from our friends at Patient Empowerment Network. In this webinar, Dr. Raajit Rampal, an MPN specialist, will share advice for making treatment decisions for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Dr.
Looks like it may be an interesting Webinar from our friends at Patient Empowerment Network. In this webinar, Dr. Raajit Rampal, an MPN specialist, will share advice for making treatment decisions for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Dr.
hunter5582
in
MPN Voice
1 year ago
Thank you!
After reading on this forum the importance of working with an MPN specialist and accessing the database provided I have changed my provider. It makes a world of difference! My new doctor confirmed the polycythemia diagnosis via bone marrow biopsy but also found No JAK2 mutation. The hydroxyurea that
After reading on this forum the importance of working with an MPN specialist and accessing the database provided I have changed my provider. It makes a world of difference! My new doctor confirmed the polycythemia diagnosis via bone marrow biopsy but also found No JAK2 mutation. The hydroxyurea that
Hidden
in
MPN Voice
1 year ago
New diagnosis
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
I have just been diagnosed with CLL via complete blood count. I have not been seen by a haematologist yet (9 May) I an a UK citizen actually living in Spain. Does anyone think or know if taking Vitamin B12 helps.
davjb15121
in
CLL Support
1 year ago
essential, thrombocythemia transformation
has any one you know had leukemic transformation from having essential turn thrombocythemia
has any one you know had leukemic transformation from having essential turn thrombocythemia
Meeileem
in
MPN Voice
1 year ago
The Role of New Technologies in Myeloproliferative Neoplasms
I was reviewing some of the items in my bookmarked resources and came across this article from 2019. It was worth a reread. The article is a literature review and has some very interesting references regarding various issues related to MPNs, including information about the three driver mutations.
I was reviewing some of the items in my bookmarked resources and came across this article from 2019. It was worth a reread. The article is a literature review and has some very interesting references regarding various issues related to MPNs, including information about the three driver mutations.
hunter5582
in
MPN Voice
1 year ago
EHA 2022: Outcomes Following Treatment With a Covalent BTK and BCL2 Inhibitor
https://cllsociety.org/2022/08/eha-2022-outcomes-following-treatment-with-a-covalent-btk-and-bcl2-inhibitor-among-patients-with-chronic-
lymphocytic
-
leukemia
-cll-small-
lymphocytic
-lymphoma-sll-a-real-world-study-of-a-large-u-s-datab/ "Conclusion: Double exposed patients with CLL/SLL don’t do well, as
https://cllsociety.org/2022/08/eha-2022-outcomes-following-treatment-with-a-covalent-btk-and-bcl2-inhibitor-among-patients-with-chronic-
lymphocytic
-
leukemia
-cll-small-
lymphocytic
-lymphoma-sll-a-real-world-study-of-a-large-u-s-datab/ "Conclusion: Double exposed patients with CLL/SLL don’t do well, as
Lavinia-Blue
in
CLL Support
2 years ago
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