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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
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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
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
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
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
Administrator
in
Leukaemia CARE
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
Administrator
in
Leukaemia CARE
3 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
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
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
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
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
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
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