Search
Search
About
Log in
Join
Experiences with
Acute leukaemia
Posts
Communities
2,770 public posts
Filter results
Is ET a Cancer
Good Day! To all .. My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis. 1/3/2022 : I was diagnosed with ET . Platelet Count : 548 , JAK2 positive . My hematologies did not prescribe me with any medication as she told me I don’t need any medication
Good Day! To all .. My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis. 1/3/2022 : I was diagnosed with ET . Platelet Count : 548 , JAK2 positive . My hematologies did not prescribe me with any medication as she told me I don’t need any medication
Ryna-Ally
in
MPN Voice
2 years ago
Evusheld shots - What now?
I just had the two Evusheld shots this week. I had CLL for several years and last November completed a 15 month clinical trial (041702) with Ibrutinib, Obinituzumab and Venetoclax. Happily, at the end I was declared uMRD. I have had 3 Pfizer shots and then a Moderna a month ago. None of these generated
I just had the two Evusheld shots this week. I had CLL for several years and last November completed a 15 month clinical trial (041702) with Ibrutinib, Obinituzumab and Venetoclax. Happily, at the end I was declared uMRD. I have had 3 Pfizer shots and then a Moderna a month ago. None of these generated
Iupiter
in
CLL Support
2 years ago
Unusual results on standard differential -- would love feedback (and, if possible, reassurance?)
Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of unanswered questions. My lymphs had gone quite up (okay, that's CLL progressing) and WBD went well up too (okay, CLL progressing) BUT, neutrophils, which
Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of unanswered questions. My lymphs had gone quite up (okay, that's CLL progressing) and WBD went well up too (okay, CLL progressing) BUT, neutrophils, which
Vlaminck
in
CLL Support
2 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
MPN Progression Webinar
Hunter very helpfully posted the recording of this webinar https://healthunlocked.com/mpnvoice/posts/147644509/mpn-progression-webinar-recording Much is familiar to us. Here are some high lights. It's long so seems worth a new post. My notes are sort of fragmented. Most comments here are from Dr
Hunter very helpfully posted the recording of this webinar https://healthunlocked.com/mpnvoice/posts/147644509/mpn-progression-webinar-recording Much is familiar to us. Here are some high lights. It's long so seems worth a new post. My notes are sort of fragmented. Most comments here are from Dr
EPguy
in
MPN Voice
2 years ago
LLS Dr. Greenberger and Dr. Saltzman update on COVID-19 pandemic, the LLS Antibody Research Study, patients responses to the COVID vaccines
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
lankisterguy
Volunteer
in
CLL Support
2 years ago
OncLive 9 CLL Videos - Optimizing the Treatment of CLL With Novel Therapies and more Take-home messages from ASH 2021
The OncLive Chronic Lymphocytic Leukemia condition center page is a comprehensive resource for clinical news and expert insights on treatment advances and ongoing research in chronic lymphocytic leukemia. This page features news articles, interviews in written and video format, and podcasts that focus
The OncLive Chronic Lymphocytic Leukemia condition center page is a comprehensive resource for clinical news and expert insights on treatment advances and ongoing research in chronic lymphocytic leukemia. This page features news articles, interviews in written and video format, and podcasts that focus
lankisterguy
Volunteer
in
CLL Support
2 years ago
JAKAFI not working
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
william-Indo
in
MPN Voice
2 years ago
Information on Acute Myeloid Leukaemia
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
Mysi
in
MPN Voice
3 years ago
To remove my port or not?
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
napa
in
CLL Support
2 years ago
COVID-19 UPDATES - The latest experimental therapies - not CLL specific, but potential treatment for COVID-19 in many cancer patients
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
lankisterguy
Volunteer
in
CLL Support
2 years ago
New User Name (EPguy) and MPN as a Continuum
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
EPguy
in
MPN Voice
2 years ago
Ruxolitinib and weight gain
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Mal42
in
MPN Voice
2 years ago
Night sweat relief?
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
9RGBZ
in
CLL Support
2 years ago
Working with CLL!
Hello all, I'm new to this site but have already gained a vast amount of knowledge and feel a sense of support from reading the posts and engaging with your stories. I received all my test results, genetic/bloods etc and confirmation of CLL back in Dec 2021. I'm on the Watch and Wait journey! I work
Hello all, I'm new to this site but have already gained a vast amount of knowledge and feel a sense of support from reading the posts and engaging with your stories. I received all my test results, genetic/bloods etc and confirmation of CLL back in Dec 2021. I'm on the Watch and Wait journey! I work
MDcard
in
CLL Support
2 years ago
What does curing CLL mean?
This is a question I often wonder about but have never asked my doctor. When we hear about a cure for CLL what we really mean is a way to live with it, correct? The existing treatments and treatments on the horizon won't necessarily eliminate CLL altogether or the associated risks of secondary cancers
This is a question I often wonder about but have never asked my doctor. When we hear about a cure for CLL what we really mean is a way to live with it, correct? The existing treatments and treatments on the horizon won't necessarily eliminate CLL altogether or the associated risks of secondary cancers
CoCoLuna11
in
CLL Support
2 years ago
"Sailing with CLL" - a sense of humor may help....
"Aboard" and "Port" are two terms which I heard in past days during my medical care: Routinly I am asked by the Cancer Clinic lab technician: "Do you have a port?" I do not. But at this moment I smile and I am tempted to say: "Yes, my port is Santo Domingo!" and I sense a bit euphoria: When I retired
"Aboard" and "Port" are two terms which I heard in past days during my medical care: Routinly I am asked by the Cancer Clinic lab technician: "Do you have a port?" I do not. But at this moment I smile and I am tempted to say: "Yes, my port is Santo Domingo!" and I sense a bit euphoria: When I retired
janvog
in
CLL Support
2 years ago
Paper on Misc Mutations
-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytokines levels are higher in myelofibrosis compared to PV and ET, with higher IL-2, sIL-2Rα, IL-6 and tumour necrosis factor α (TNFa)>> NAC supplement improves IL-6, and TNFa in various studies. -- Triple Neg isn't: <<Previously
-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytokines levels are higher in myelofibrosis compared to PV and ET, with higher IL-2, sIL-2Rα, IL-6 and tumour necrosis factor α (TNFa)>> NAC supplement improves IL-6, and TNFa in various studies. -- Triple Neg isn't: <<Previously
EPguy
in
MPN Voice
2 years ago
Study shows more Driver Mutations in General Population
The Denmark study used super sensitive tests.. MPNs may be far more common than current info suggets. The image here shows 3% have a Jak2 mutation even as most of these have no MPN Dx. Their cutoff of 1% (orange circle) still includes way more than MPN with Dx (grey circle) Highlights: Their point
The Denmark study used super sensitive tests.. MPNs may be far more common than current info suggets. The image here shows 3% have a Jak2 mutation even as most of these have no MPN Dx. Their cutoff of 1% (orange circle) still includes way more than MPN with Dx (grey circle) Highlights: Their point
EPguy
in
MPN Voice
2 years ago
Did anyone have MGUS progress into CLL, and after treatment for CLL, did your MGUS improve or no longer exist?
Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal Gammopathy of Undetermined Significance) 15 years ago. It is an abnormal protein (M protein) in the blood and a precancerous condition to Multiple Myeloma, Lymphoma, CLL etc. I was diagnosed in October 2021
Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal Gammopathy of Undetermined Significance) 15 years ago. It is an abnormal protein (M protein) in the blood and a precancerous condition to Multiple Myeloma, Lymphoma, CLL etc. I was diagnosed in October 2021
Luv2Craft
in
CLL Support
2 years ago
To continue or not....that is the question
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
Dawson21
in
CLL Support
2 years ago
1
...
26
27
28
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1634 results
MPN Voice
795 results
Leukaemia Support
171 results
View top 10 communities
Sort by
Most Relevant
Newest