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Factors Identified for Risk of Second Cancer in CLL Following BTK Inhibition
There was hope that non-chemo CLL treatments would avoid the increased risk of subsequent secondary cancers, with concern about Myelodysplasia Syndromes and
Acute
Lymphocytic
Leukaemia
(MDS and ALL) of particular concern with FCR, due to possible DNA damage to bone marrow stem cells.
There was hope that non-chemo CLL treatments would avoid the increased risk of subsequent secondary cancers, with concern about Myelodysplasia Syndromes and
Acute
Lymphocytic
Leukaemia
(MDS and ALL) of particular concern with FCR, due to possible DNA damage to bone marrow stem cells.
AussieNeil
Partner
in
CLL Support
5 years ago
Clinical trial
Hi everyone. I have myelofibrosis. I am on ruxolitinib at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I went to London talked the very nice Dr. He gave me 2 literature books to read regarding the trial. I really don't know what to do. I'm thinking
Hi everyone. I have myelofibrosis. I am on ruxolitinib at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I went to London talked the very nice Dr. He gave me 2 literature books to read regarding the trial. I really don't know what to do. I'm thinking
Ven61
in
MPN Voice
5 years ago
Does anybody else have Polycythaemia Vera with CAL R and TET2 mutations? My doctors seem to be very confused..
Hey everyone, My name is Erik I’m new here and if anybody has any info they could share with me about this, as I was just diagnosed in December 2018, but haven’t been feeling good for a very long time I would appreciate it!Thank you in advance.
Hey everyone, My name is Erik I’m new here and if anybody has any info they could share with me about this, as I was just diagnosed in December 2018, but haven’t been feeling good for a very long time I would appreciate it!Thank you in advance.
Emurr
in
MPN Voice
5 years ago
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Hcl
Recently diagnosed with dle have a consultants appt in 3 weeks to hopefully start hcl. I'm assuming I'll just be given a prescription or do I get a choice of which hcl I'd prefer?? I've had the eye test plus blood /urine tests Thanks in advance for any advise I'm feeling like a little fish in a big
Recently diagnosed with dle have a consultants appt in 3 weeks to hopefully start hcl. I'm assuming I'll just be given a prescription or do I get a choice of which hcl I'd prefer?? I've had the eye test plus blood /urine tests Thanks in advance for any advise I'm feeling like a little fish in a big
Gemllo
in
LUPUS UK
5 years ago
Bone marrow test ?
Hi everybody My wife was diagnosed with CLL five years ago , she’s 13q delation mutated and started Imbruvica in January with excellent results since her numbers are almost back to normal. Her oncologist is in France and since diagnosis, she had two complete scans the first year ,two FISH test in all
Hi everybody My wife was diagnosed with CLL five years ago , she’s 13q delation mutated and started Imbruvica in January with excellent results since her numbers are almost back to normal. Her oncologist is in France and since diagnosis, she had two complete scans the first year ,two FISH test in all
Sergi
in
CLL Support
5 years ago
Potential Early Drivers of Disease in Treatment-Naive CLL Identified
[i]This study reinforces others regarding mutations that predict a short time to first treatment. I think those of us that are 11qdel are aware of the association of 11qdel with mutated ATM and unmutated IGHV status.[/i] By determining the relationship between a set of somatic mutations and established
[i]This study reinforces others regarding mutations that predict a short time to first treatment. I think those of us that are 11qdel are aware of the association of 11qdel with mutated ATM and unmutated IGHV status.[/i] By determining the relationship between a set of somatic mutations and established
Jm954
Administrator
in
CLL Support
5 years ago
Use of MRD Status Following Obinutuzumab/Ibrutinib to Guide Subsequent Intensification of Therapy in CLL
August 6, 2019 In this 2-part, single-arm, open-label, multicenter trial (Clinical Trials.gov Identifier: NCT02666898), medically fit, adult patients with treatment-naive CLL not characterized by a 17p deletion or a mutation in TP53 received 9 months of chemotherapy-free induction therapy with the combination
August 6, 2019 In this 2-part, single-arm, open-label, multicenter trial (Clinical Trials.gov Identifier: NCT02666898), medically fit, adult patients with treatment-naive CLL not characterized by a 17p deletion or a mutation in TP53 received 9 months of chemotherapy-free induction therapy with the combination
Jm954
Administrator
in
CLL Support
5 years ago
Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place
Published: Saturday, Sep 14, 2019 During a presentation at the 2019 Society of Haematological Oncology Annual Meeting, Dr Jain said recent clinical trial findings have helped clarify therapy choices based on the patient’s age, comorbid conditions, and mutation status but that questions about optimal
Published: Saturday, Sep 14, 2019 During a presentation at the 2019 Society of Haematological Oncology Annual Meeting, Dr Jain said recent clinical trial findings have helped clarify therapy choices based on the patient’s age, comorbid conditions, and mutation status but that questions about optimal
Jm954
Administrator
in
CLL Support
5 years ago
Duvelisib Dosing Modification Does Not Compromise Efficacy in Heavily Pretreated CLL/SLL
Reducing or interrupting duvelisib (Copiktra) treatment does not increase toxicity or reduce outcomes with relapsed/refractory chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL). Furthermore, treatment with the PI3K inhibitor led to a superior median progression-free survival (PFS) compared
Reducing or interrupting duvelisib (Copiktra) treatment does not increase toxicity or reduce outcomes with relapsed/refractory chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL). Furthermore, treatment with the PI3K inhibitor led to a superior median progression-free survival (PFS) compared
Jm954
Administrator
in
CLL Support
5 years ago
Bone marrow
My Bone marrow biopsy showed that I have 80% cancer in the marrow. Is this rather high for people with CLL? Do all CLL patients have a bone marrow biopsy
My Bone marrow biopsy showed that I have 80% cancer in the marrow. Is this rather high for people with CLL? Do all CLL patients have a bone marrow biopsy
tootsie2
in
CLL Support
5 years ago
CLL Society Support Group Member Resource Guide
This list was created by the LA Support Group of The CLL Society and would be useful primarily for USA residents. -
CLL Society Support Group Member Resource Guide
There are many resources for CLL patients and caregivers. This is not a complete list, but a curation of resources. [u]National
This list was created by the LA Support Group of The CLL Society and would be useful primarily for USA residents. -
CLL Society Support Group Member Resource Guide
There are many resources for CLL patients and caregivers. This is not a complete list, but a curation of resources. [u]National
lankisterguy
Volunteer
in
CLL Support
5 years ago
Marginal zone lymphoma Facebook support group
https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t mind my sharing a link to the marginal zone lymphoma Facebook site for the members on this site who have been diagnosed with a combo of CLL and mzl or mzl. This is a rarer lymphoma with much less research done so it is
https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t mind my sharing a link to the marginal zone lymphoma Facebook site for the members on this site who have been diagnosed with a combo of CLL and mzl or mzl. This is a rarer lymphoma with much less research done so it is
Judyanne
in
CLL Support
5 years ago
CLL, Spleen Recovery+recommendations
Hi All, I was hoping to draw on your knowledge, wisdom and experience in dealing with CLL. I was diagnosed in 7/2008 and for almost 11 years was doing quite well but 3 months ago my spleen started to get enlarged, wbc were 76K and swollen lymph nodes to say the least. I had my first dose of Gazyva or
Hi All, I was hoping to draw on your knowledge, wisdom and experience in dealing with CLL. I was diagnosed in 7/2008 and for almost 11 years was doing quite well but 3 months ago my spleen started to get enlarged, wbc were 76K and swollen lymph nodes to say the least. I had my first dose of Gazyva or
SCE2AUX
in
CLL Support
5 years ago
A Tool to Select Candidates for Allogeneic Hematopoietic Cell Transplant in CLL but do we need it?
August 14, 2019 From this it's clear that transplant is not an easy decision to make and the new targeted treatments may have changed the landscape again. [i]"The past 5 years have seen the introduction of several new treatments that have significantly extended survival rates for patients with chronic
August 14, 2019 From this it's clear that transplant is not an easy decision to make and the new targeted treatments may have changed the landscape again. [i]"The past 5 years have seen the introduction of several new treatments that have significantly extended survival rates for patients with chronic
Jm954
Administrator
in
CLL Support
5 years ago
Time for a change!
After 20 years with myeloma and being well controlled with Lenalidamide for the last 5 years things have changed suddenly. A sudden dip in blood results necessitated a bone marrow and low and behold I now also have CLL. I have just started on Obinutuzomab and will add chlorambucil when I return from
After 20 years with myeloma and being well controlled with Lenalidamide for the last 5 years things have changed suddenly. A sudden dip in blood results necessitated a bone marrow and low and behold I now also have CLL. I have just started on Obinutuzomab and will add chlorambucil when I return from
Paul_Cabban
in
Leukaemia Support
5 years ago
MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)
We
URGENTLY
need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to PV patients living in Scotland. But we want to hear from you if you have PV regardless of where you live or whether you have had Ruxolitinib
We
URGENTLY
need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to PV patients living in Scotland. But we want to hear from you if you have PV regardless of where you live or whether you have had Ruxolitinib
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Patient Power Video updates on Blood Testing and New Treatment updates
Patient Power email here: https://www.patientpower.info/index.cfm?objectid=0F37AC70-C38E-11E9-9C33000D3A30C4F8 - Includes video updates from two of my favorite doctors that can explain complex subjects using understandable language. Dr. Susan LeClair and Dr. Nicole Lamanna. - https://www.patientpower.info
Patient Power email here: https://www.patientpower.info/index.cfm?objectid=0F37AC70-C38E-11E9-9C33000D3A30C4F8 - Includes video updates from two of my favorite doctors that can explain complex subjects using understandable language. Dr. Susan LeClair and Dr. Nicole Lamanna. - https://www.patientpower.info
lankisterguy
Volunteer
in
CLL Support
5 years ago
Worsening symptoms of myelofibrosis
Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET myelofibrosis and since diagnosis has become more and more tired. He is on hydro (fluctuating dose) and Rux along with other medications for a heart condition and portal hypertension
Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET myelofibrosis and since diagnosis has become more and more tired. He is on hydro (fluctuating dose) and Rux along with other medications for a heart condition and portal hypertension
Goldfish212
in
MPN Voice
5 years ago
Relapsing after remission
I've been in remission for about two years now. Just came from a routine 6 month check-up. My Hematologist noticed that my platelets have dropped below normal and that my absolute lymphocytes are above normal. I will checked again in three months. Has anyone relapsed from remission? If so, did they
I've been in remission for about two years now. Just came from a routine 6 month check-up. My Hematologist noticed that my platelets have dropped below normal and that my absolute lymphocytes are above normal. I will checked again in three months. Has anyone relapsed from remission? If so, did they
dianejoyce
in
CLL Support
5 years ago
2nd Update on Possible Richters Transformation
The upside is I don’t have RT, but I did pick up some more high risk markers in addition to : 11q and unmutated. I learned in July the results of the DNA sequencing study. I picked up TP53, Notch1, ATM and few other ones that predispose me to head and neck cancer and cognitive decline. They did not
The upside is I don’t have RT, but I did pick up some more high risk markers in addition to : 11q and unmutated. I learned in July the results of the DNA sequencing study. I picked up TP53, Notch1, ATM and few other ones that predispose me to head and neck cancer and cognitive decline. They did not
ReneeSusan
in
CLL Support
5 years ago
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