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Really??: Pruritus May Mark Severe Symptomology in Myeloproliferative Neoplasms"- From "Hematology Advisor"- Some surprising findings...
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
PhysAssist
in
MPN Voice
1 year ago
Anyone else being seen at Royal Marsden Sutton?
Hi. Its a while since I’ve posted. I’m now being treated at the Royal Marsden in Sutton - are any other people being treated there? I have myelofibrosis. Would be nice to be in touch with others in the area. My husband developed a glioblastoma very suddenly 2 yrs ago and died within 3 months.
Hi. Its a while since I’ve posted. I’m now being treated at the Royal Marsden in Sutton - are any other people being treated there? I have myelofibrosis. Would be nice to be in touch with others in the area. My husband developed a glioblastoma very suddenly 2 yrs ago and died within 3 months.
Rachelthepotter
in
MPN Voice
1 year ago
Hematocrit question
Currently Hematocrit is 43.1, Hbg 12.4. Am going on a trip so won’t have access to phlebotomy for over 3 weeks & don’t want to go over 45 especially while being on a long flight. Asked my Dr & she approved it Wondering if there would be any concern if the phlebotomy would lower my hematocrit to 41 or
Currently Hematocrit is 43.1, Hbg 12.4. Am going on a trip so won’t have access to phlebotomy for over 3 weeks & don’t want to go over 45 especially while being on a long flight. Asked my Dr & she approved it Wondering if there would be any concern if the phlebotomy would lower my hematocrit to 41 or
wateron
in
MPN Voice
1 year ago
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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
Rux and IFN combo therapy
This recent report points to benefits of combining Rux and IFN. Of particular interest is the low doses that were enabled toward the end. -Notable: "The JAK2V617F allele burden was significantly reduced 3 months after the start of treatment, and continued to decline from a median of 47% to 6%." In
This recent report points to benefits of combining Rux and IFN. Of particular interest is the low doses that were enabled toward the end. -Notable: "The JAK2V617F allele burden was significantly reduced 3 months after the start of treatment, and continued to decline from a median of 47% to 6%." In
EPguy
in
MPN Voice
1 year ago
Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
PhysAssist
in
MPN Voice
1 year ago
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
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
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
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
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
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
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
Foundation One heme blood test results
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Cusube1967
in
CLL Support
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
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
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
The current status and challenges of CAR-T therapy in CLL
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
Jm954
Administrator
in
CLL Support
1 year ago
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