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A brief update post Venetoclax+Rituximab - treatment number 4
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Jm954
Administrator
in
CLL Support
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
See a Dermatologist On a Regular Basis, if possible.
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Vizilo
in
CLL Support
2 years ago
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Doctor cannot fully diagnose without bone marrow biopsy and PET scan?
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
SunCalifornia
in
CLL Support
2 years ago
Rapamycin
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
MDI55
in
MPN Voice
2 years ago
Covid treatments in the UK - clinical guide
treatments-independent-advisory-group-report/defining-the-highest-risk-clinical-subgroups-upon-community-infection-with-sars-cov-2-when-considering-the-use-of-neutralising-monoclonal-antibodies and include "all people who... are diagnosed with: ...chronic B-cell lymphoproliferative disorders (chronic lymphocytic
leukaemia
treatments-independent-advisory-group-report/defining-the-highest-risk-clinical-subgroups-upon-community-infection-with-sars-cov-2-when-considering-the-use-of-neutralising-monoclonal-antibodies and include "all people who... are diagnosed with: ...chronic B-cell lymphoproliferative disorders (chronic lymphocytic
leukaemia
bennevisplace
in
CLL Support
2 years ago
Second Malignancies Among Older Patients With Classical MPN Treated With Hydroxyurea
TAKE-HOME MESSAGE In this retrospective cohort study of 4023 patients aged ≥66 years with classical Philadelphia chromosome–negative myeloproliferative neoplasms (MPN), there was no significant difference in the incidence of solid or hematologic second malignancies in patients treated with hydroxyurea
TAKE-HOME MESSAGE In this retrospective cohort study of 4023 patients aged ≥66 years with classical Philadelphia chromosome–negative myeloproliferative neoplasms (MPN), there was no significant difference in the incidence of solid or hematologic second malignancies in patients treated with hydroxyurea
Manouche
in
MPN Voice
2 years ago
CLL highly correlated to other cancers?
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
NixRose
in
CLL Support
2 years ago
Monoclonal gammopathy and serum immunoglobulin levels as prognostic factors in chronic lymphocytic leukaemia
"Immune dysregulation represents a dynamic process evolving during time, often towards hypogammaglobulineamia, especially therapy-related or during disease progression,8-11 and thus with a different subdivision over time. Nevertheless our study constitutes a ‘photograph’ at diagnosis of CLL patients
"Immune dysregulation represents a dynamic process evolving during time, often towards hypogammaglobulineamia, especially therapy-related or during disease progression,8-11 and thus with a different subdivision over time. Nevertheless our study constitutes a ‘photograph’ at diagnosis of CLL patients
Yalokin
in
CLL Support
2 years ago
Relapse Worries? Help, Please!
Hi everyone, I started treatment (V + O) in January 2020; a year later, I was done, and had a flow blood result of "no detectable abnormalities" or whatever. Yay! Today, however, I got the results of another flow blood test, 20 months after treatment ended, and it says "the immunophenotype of these
Hi everyone, I started treatment (V + O) in January 2020; a year later, I was done, and had a flow blood result of "no detectable abnormalities" or whatever. Yay! Today, however, I got the results of another flow blood test, 20 months after treatment ended, and it says "the immunophenotype of these
DRM18
in
CLL Support
2 years ago
Study shows that over half of known human pathogenic diseases can be aggravated by climate change
Recently published in Nature https://www.nature.com/articles/s41558-022-01426-1 [i]"Here we carried out a systematic search for empirical examples about the impacts of ten climatic hazards sensitive to greenhouse gas (GHG) emissions on each known human pathogenic disease. We found that 58% (that is,
Recently published in Nature https://www.nature.com/articles/s41558-022-01426-1 [i]"Here we carried out a systematic search for empirical examples about the impacts of ten climatic hazards sensitive to greenhouse gas (GHG) emissions on each known human pathogenic disease. We found that 58% (that is,
bennevisplace
in
CLL Support
2 years ago
Need Urgent help for CAR-T therapy
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
nuji
in
CLL Support
2 years ago
Thrombocytosis of no known cause?
But my haematologist back then said he treated
leukaemia
and I hadn't got that. In fact he was mad I had been sent to him. Said he hadn't hot a clue. My thread is here from my site before. I hadn't realised but when looking on the Internet it came up .
But my haematologist back then said he treated
leukaemia
and I hadn't got that. In fact he was mad I had been sent to him. Said he hadn't hot a clue. My thread is here from my site before. I hadn't realised but when looking on the Internet it came up .
Notdiagnosed
in
MPN Voice
2 years ago
Monoclonal antibodies vs. Paxlovid
I recently recovered from Covid-19 after taking Paxlovid. I was diagnosed with CLL in 2009 and began treatment with Ibrutinib in early December 2020. I also received the full recommended doses of Evusheld since antibody tests showed I had an inadequate response to the vaccine. My case of Covid was
I recently recovered from Covid-19 after taking Paxlovid. I was diagnosed with CLL in 2009 and began treatment with Ibrutinib in early December 2020. I also received the full recommended doses of Evusheld since antibody tests showed I had an inadequate response to the vaccine. My case of Covid was
AVD92449
in
CLL Support
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
New Diagnosis :what does all this blood work mean?
I was recently diagnosed with CLL. My hematologist/oncologist ran the standard tests and this is some of the info I see: No Jak2 17 mutation detected, No 9 mutation detected, No 12 mutation detected, No 10 mutation detected, No 14/17 Mutation detected A negative FISH for BCR-ABLI fusion. 2 weeks
I was recently diagnosed with CLL. My hematologist/oncologist ran the standard tests and this is some of the info I see: No Jak2 17 mutation detected, No 9 mutation detected, No 12 mutation detected, No 10 mutation detected, No 14/17 Mutation detected A negative FISH for BCR-ABLI fusion. 2 weeks
Adante
in
CLL Support
2 years ago
ET and PV Treatments Are Moving Toward Disease Modification
« An improved understanding of these myeloproliferative neoplasms, including the identification of driver mutations in JAK2, CALR, and MPL, has opened the door to treatments that enable the natural history of these diseases to be altered » « There are preclinical data suggesting [that interferons suppress
« An improved understanding of these myeloproliferative neoplasms, including the identification of driver mutations in JAK2, CALR, and MPL, has opened the door to treatments that enable the natural history of these diseases to be altered » « There are preclinical data suggesting [that interferons suppress
Manouche
in
MPN Voice
2 years ago
Treatment characteristics desired by renal cell carcinoma patients.
I am trying to learn more about health issues that are priority for the patients and their expectations for possible treatments.
I am conducting series of preference studies around the APAC region to understand patient preference and satisfaction with the patient care.
Such preference studies
I am trying to learn more about health issues that are priority for the patients and their expectations for possible treatments.
I am conducting series of preference studies around the APAC region to understand patient preference and satisfaction with the patient care.
Such preference studies
stage4RCCpatient
in
My Cancer Community
2 years ago
World CLL Day / Blood Cancer Awareness Month
CLL Support is marking Blood Cancer Awareness Month in September with an initiative that underpins our “You Can Live Well with CLL” message. This is not simply a convenient phrase that rhymes but seeks to demonstrate and empower our members to endeavour to make the best of their diagnosis, treatment
CLL Support is marking Blood Cancer Awareness Month in September with an initiative that underpins our “You Can Live Well with CLL” message. This is not simply a convenient phrase that rhymes but seeks to demonstrate and empower our members to endeavour to make the best of their diagnosis, treatment
Mild-Rover
in
CLL Support
2 years ago
Jak2 targeting for therapies
We've had posts on promising immune therapies for CALR. These take advantage of the fact that CALR is findable in the body. A related item is the resistance of Jak2 being discovered and thus a barrier to immune therapies for Jak2. Here is a very technical report I don't understand, but I believe
We've had posts on promising immune therapies for CALR. These take advantage of the fact that CALR is findable in the body. A related item is the resistance of Jak2 being discovered and thus a barrier to immune therapies for Jak2. Here is a very technical report I don't understand, but I believe
EPguy
in
MPN Voice
2 years ago
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