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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
Bone marrow transplant
Hello, I am 60 years old. I have been struggling with AMN for over 35 years. I am wheelchair bound, but can still stand. My symptoms have been stable for many years. In a few weeks, I will be getting my first MRI in 30 years. I am afraid if the results are poor, I will have to get bone marrow transplant
Hello, I am 60 years old. I have been struggling with AMN for over 35 years. I am wheelchair bound, but can still stand. My symptoms have been stable for many years. In a few weeks, I will be getting my first MRI in 30 years. I am afraid if the results are poor, I will have to get bone marrow transplant
HenryW
in
AMN EASIER
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
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Map of Human Blood Stem Cell Development Created
ARTICLE https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/stem-cells/map-of-human-blood-stem-cell-development-created/ : EXTRACTS Researchers at UCLA have created a detailed map of human blood cells and how they develop in an embryo, which could help improve treatments for blood-related
ARTICLE https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/stem-cells/map-of-human-blood-stem-cell-development-created/ : EXTRACTS Researchers at UCLA have created a detailed map of human blood cells and how they develop in an embryo, which could help improve treatments for blood-related
bennevisplace
in
CLL Support
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
CAR-T, why it's not ready for MPNs
Today's CNN has an article about CAR-T being curative for leukemia CLL. So I checked it out a bit further. http://www.mpnresearchfoundation.org/news/what-does-the-approval-of-kymriah-mean-for-mpn-patients/ As I understand it CAR-T looks at the antigens on the surface of the cells, and cannot see inside
Today's CNN has an article about CAR-T being curative for leukemia CLL. So I checked it out a bit further. http://www.mpnresearchfoundation.org/news/what-does-the-approval-of-kymriah-mean-for-mpn-patients/ As I understand it CAR-T looks at the antigens on the surface of the cells, and cannot see inside
EPguy
in
MPN Voice
2 years ago
HU Resistance/Intolerance Prognostic from Dr Gotlib
I came across this interview including Dr. Gotlib, Stanford MPN expert. It's regarding MDM Inhibitors for HU resistant/intolerant PV, MF "Experts Explain MDM2 Inhibition and Clinical Trial for MPN Patients" https://patientpower.info/myeloproliferative-neoplasms/emerging-research/experts-explain-mdm2
I came across this interview including Dr. Gotlib, Stanford MPN expert. It's regarding MDM Inhibitors for HU resistant/intolerant PV, MF "Experts Explain MDM2 Inhibition and Clinical Trial for MPN Patients" https://patientpower.info/myeloproliferative-neoplasms/emerging-research/experts-explain-mdm2
EPguy
in
MPN Voice
2 years ago
Anyone with Chronic Idiopathic Myelofibrosis?
Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxyurea for 2yrs now. Have terrible leg pain in bed not all the time anyone else with this .
Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxyurea for 2yrs now. Have terrible leg pain in bed not all the time anyone else with this .
Mrbeasley
in
MPN Voice
2 years ago
What's the latest on access to COVID -19 treatments for the immunocompromised
We know many patients and their families remain concerned about the risk of severe illness should you catch COVID-19. The Leukaemia Care information page has been updated to take into account latest information of what treatments have been recently made available for immunocompromised patients, eligibility
We know many patients and their families remain concerned about the risk of severe illness should you catch COVID-19. The Leukaemia Care information page has been updated to take into account latest information of what treatments have been recently made available for immunocompromised patients, eligibility
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
CAR T vaccine
GeoVax is conducting two Phase II COVID-19 vaccine clinical trials with its GEO-CMO4S1 vaccine. One of the trials is among immunocompromised patients who have been treated with CAR T therapy or have undergone bone marrow transplants. https://www.biospace.com/article/geovax-s-novel-vaccine-platform-induces-both-antibody-and-t-cell-responses
GeoVax is conducting two Phase II COVID-19 vaccine clinical trials with its GEO-CMO4S1 vaccine. One of the trials is among immunocompromised patients who have been treated with CAR T therapy or have undergone bone marrow transplants. https://www.biospace.com/article/geovax-s-novel-vaccine-platform-induces-both-antibody-and-t-cell-responses
Scout4answers
in
Advanced Prostate Cancer
2 years ago
I Have Just Completed My 12 Month CLL Treatment Plan
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
DanBro1
in
CLL Support
2 years ago
Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic Leukaemia
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
CLLerinOz
Administrator
in
CLL Support
2 years ago
What’s New in MS Research - March 2022
Thank you again to everyone who posted about and is discussing MSAA's latest edition of the "What's New in MS Research" report on our website! For those that don't know: this series of online articles is published periodically and features important information on topics ranging from highlights of major
Thank you again to everyone who posted about and is discussing MSAA's latest edition of the "What's New in MS Research" report on our website! For those that don't know: this series of online articles is published periodically and features important information on topics ranging from highlights of major
johnMSAA
Partner
in
My MSAA Community
2 years ago
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