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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
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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
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
Webinar 3.30pm 12th November - CAR-T therapy update
Leigh Wood, Team Lead and Senior Clinical Trial Practitioner, University College London Hospitals NHS Foundation Trust Sophie Wheldon, CAR-T treated
acute
lymphoblastic
leukaemia
(ALL) patient
Leigh Wood, Team Lead and Senior Clinical Trial Practitioner, University College London Hospitals NHS Foundation Trust Sophie Wheldon, CAR-T treated
acute
lymphoblastic
leukaemia
(ALL) patient
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Shingles vaccine for cll patients
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
Splashes
in
CLL Support
2 years ago
Ports?
Good morning, I have Polycythemia Vera. I am having regular phlebotomy and do not have the best veins. I am wondering if anyone out there, who is having phlebotomy, had a port put in instead of having arm phlebotomy and how that is working out for you? I welcome all thoughts/comments about this. Thanks
Good morning, I have Polycythemia Vera. I am having regular phlebotomy and do not have the best veins. I am wondering if anyone out there, who is having phlebotomy, had a port put in instead of having arm phlebotomy and how that is working out for you? I welcome all thoughts/comments about this. Thanks
Bluetoday1
in
MPN Voice
2 years ago
Leukemia & Lymphoma Society (USA) provides a LLS Clinical Trial Nurse Navigator to assist you throughout the entire clinical trial process
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
lankisterguy
Volunteer
in
CLL Support
2 years ago
PV and CML?
I was diagnosed with PV, Jak 2+ several years ago. I have been here on MPN Voice for most of that time. I appreciate how everyone shares their experiences and now I have a new one to share! My newest hematologist, MD Anderson Cancer Center where I live has been through several changes in Dr.s, is having
I was diagnosed with PV, Jak 2+ several years ago. I have been here on MPN Voice for most of that time. I appreciate how everyone shares their experiences and now I have a new one to share! My newest hematologist, MD Anderson Cancer Center where I live has been through several changes in Dr.s, is having
Jsb45
in
MPN Voice
2 years ago
Ibrutinib Resistance
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Adel1
in
CLL Support
2 years ago
Adult blood cancer-causing mutations occur in early childhood
The paper, published today (19 January 2022) in Nature, suggests that these mutations will cause blood cells to multiply at different rates in different people, and those in whom these mutations cause faster growth have cancer symptoms appearing earlier. If these mutations proliferate slowly, it is possible
The paper, published today (19 January 2022) in Nature, suggests that these mutations will cause blood cells to multiply at different rates in different people, and those in whom these mutations cause faster growth have cancer symptoms appearing earlier. If these mutations proliferate slowly, it is possible
Manouche
in
MPN Voice
2 years ago
Myelo fibrosis
Hi I am in the intermediate stage, level 2 of the disease and go onto ruxolitinib tomorrow. I have looked on several forums and never managed to connect with any fellow sufferers from this mpn variant. Can't get any real information on immunosuppression or even what to expect or look for in the future
Hi I am in the intermediate stage, level 2 of the disease and go onto ruxolitinib tomorrow. I have looked on several forums and never managed to connect with any fellow sufferers from this mpn variant. Can't get any real information on immunosuppression or even what to expect or look for in the future
Carpangler
in
MPN Voice
2 years ago
Red wine
Is a glass of red wine a day helpful or harmful for Polycythemia Vera? I’ve read that resveratrol might affect the JAK2 mutated cells.
Is a glass of red wine a day helpful or harmful for Polycythemia Vera? I’ve read that resveratrol might affect the JAK2 mutated cells.
Dan73
in
MPN Voice
2 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
2 years ago
Combined ttherapy
As Ruxolitinib is no longer working well, my haematologist has suggested combining either Danazol, Thalidomide or Prednisone with the Ruxo. Has.anyone any experience of this? What are the pros and cons? I am very worried about the side effects. Thankyou SkipperL
As Ruxolitinib is no longer working well, my haematologist has suggested combining either Danazol, Thalidomide or Prednisone with the Ruxo. Has.anyone any experience of this? What are the pros and cons? I am very worried about the side effects. Thankyou SkipperL
skipperL
in
MPN Voice
3 years ago
BTK inhibitor challenges by Dr. Nicole Lamanna
Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https://www.onclive.com/view/challenges-continued - This video is intended for Medical Professionals, using Med-Speak at a rapid pace, so I have pasted the transcript below. - Nicole Lamanna, MD: With the advent of the BTK [Bruton
Nicole Lamanna, MD, continues her discussion on BTK inhibitor challenges. https://www.onclive.com/view/challenges-continued - This video is intended for Medical Professionals, using Med-Speak at a rapid pace, so I have pasted the transcript below. - Nicole Lamanna, MD: With the advent of the BTK [Bruton
lankisterguy
Volunteer
in
CLL Support
2 years ago
46, Watch and Wait is over. Starting Acalibrutinib + Venetoclax - Anything I should look out for?
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Flitzebogen
in
CLL Support
2 years ago
Side effects of Interferon
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Heather270240
in
MPN Voice
3 years ago
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