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A HUGE THANK YOU š¤ TO ALL !!! ADMINISTRATION, DOCTORS AND ALIKE. THANK YOU TO ALL OUR WONDERFUL CLL COMMUNITYš¤ā¤!!!
Thank You!!! For keeping myself informed, as to the latest information, and research with this devastating Corona Virus!š·. Aside from TV, Radio, Newspaper !!! The CLL Support Community is " The Bomb" š as they say.!!! Unfortunately, I had to inform my two clients( an elderly lady with Lymphedema and
Thank You!!! For keeping myself informed, as to the latest information, and research with this devastating Corona Virus!š·. Aside from TV, Radio, Newspaper !!! The CLL Support Community is " The Bomb" š as they say.!!! Unfortunately, I had to inform my two clients( an elderly lady with Lymphedema and
debdetermine58
in
CLL Support
4 years ago
walter49
I was diagnosed with CLL in 2013 and have been on W &W since then, with no intervention. I have half-yearly blood checks and my blood results have, apart from a blip a couple of years ago when I had a bone marrow specimen taken, been, according to my consultant, nearly as good as āa normalā personās
I was diagnosed with CLL in 2013 and have been on W &W since then, with no intervention. I have half-yearly blood checks and my blood results have, apart from a blip a couple of years ago when I had a bone marrow specimen taken, been, according to my consultant, nearly as good as āa normalā personās
Walter49
in
CLL Support
4 years ago
Cll UK conflicting advice
Ok as I understand it the UK government has asked us with cll on chemo or inhibitors or stem cell ,BMT to self isolate for 12:weeks and have seen this as advice given in bloodwise . But thought I would phone my own hospital James Paget and my consultant secretary to see what there advice is and they
Ok as I understand it the UK government has asked us with cll on chemo or inhibitors or stem cell ,BMT to self isolate for 12:weeks and have seen this as advice given in bloodwise . But thought I would phone my own hospital James Paget and my consultant secretary to see what there advice is and they
cartwheels
in
CLL Support
4 years ago
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People with specific cancers: people with cancer who are undergoing active chemotherapy people with lung cancer who are undergoing radical radiotherapy people with cancers of the blood or bone marrow such as
leukaemia
, lymphoma or myeloma who are at any stage of treatment people having immunotherapy
People with specific cancers: people with cancer who are undergoing active chemotherapy people with lung cancer who are undergoing radical radiotherapy people with cancers of the blood or bone marrow such as
leukaemia
, lymphoma or myeloma who are at any stage of treatment people having immunotherapy
gilders
in
Early CKD Support
4 years ago
Melatonin against platelets?
Dear all, Since I was given melatonin not for sleep, but to detox, Iāve been much better. I looked up effect of melatonin on platelets and I was shocked to find that melatonin caused platelet apoptosis (death). There are studies proving this. Here is info: https://www.sciencedirect.com/science/article
Dear all, Since I was given melatonin not for sleep, but to detox, Iāve been much better. I looked up effect of melatonin on platelets and I was shocked to find that melatonin caused platelet apoptosis (death). There are studies proving this. Here is info: https://www.sciencedirect.com/science/article
Anag
in
MPN Voice
4 years ago
Options other than transplant?
Hi, I'm new to the forum and was wondering if anybody has chosen not to go for stem cell transplant after getting good bone marrow results after the consolidation phase of chemo? I'm also struggling to find other people who have been diagnosed with A.L.L. in their 50s like me as it seems to usually bea
Hi, I'm new to the forum and was wondering if anybody has chosen not to go for stem cell transplant after getting good bone marrow results after the consolidation phase of chemo? I'm also struggling to find other people who have been diagnosed with A.L.L. in their 50s like me as it seems to usually bea
Gemini1967
in
Leukaemia CARE
4 years ago
An Early Look at When CAR-T Therapy Fails Patients With CLL
Not exactly an optimistic report. Dr James Gerson, MD, - "Not a lot is known as to what happens in the patients for whom CAR-T therapy does not work,ā āAnecdotally, we say that patients often progress rapidly and arenāt able to get further therapies, but itās not something thereās a lot of data for.
Not exactly an optimistic report. Dr James Gerson, MD, - "Not a lot is known as to what happens in the patients for whom CAR-T therapy does not work,ā āAnecdotally, we say that patients often progress rapidly and arenāt able to get further therapies, but itās not something thereās a lot of data for.
Jm954
Administrator
in
CLL Support
4 years ago
Low in mood & no motivation
My dad died April 19ā from
leukaemia
complications when we thought he was recovering and my uncle died very unexpectedly at the beginning of the month on the flight home from holiday. I have been struggling to take it all in. I now have my 96 year old grandmother to watch over.
My dad died April 19ā from
leukaemia
complications when we thought he was recovering and my uncle died very unexpectedly at the beginning of the month on the flight home from holiday. I have been struggling to take it all in. I now have my 96 year old grandmother to watch over.
mynameisbecki
in
Mental Health Support
4 years ago
Tagresso Treatment
Anyone being treated with Tagresso? I have EGFR mutation and am on the drug as first line of defense. I was a non smoker and diagnosed at stage four. The cancer is in my right lung and was on my vernacular vertebrae. At the five week scan the cancer on my back was gone and the tumors had 50% shrinkage
Anyone being treated with Tagresso? I have EGFR mutation and am on the drug as first line of defense. I was a non smoker and diagnosed at stage four. The cancer is in my right lung and was on my vernacular vertebrae. At the five week scan the cancer on my back was gone and the tumors had 50% shrinkage
celesteDeS
in
Lung Conditions Community Forum
4 years ago
COVID-19 Particularly Risky for CLL Patients
I must say, this article from Fred Hutch did nothing to brighten my day. But, it did make me wash my hands (yet again). According to Dr. Steve Pergam, clinical and infectious disease researcher at Fred Hutch, patients with hematologic malignancies are at greatest risk from COVID-19. Of course, CLL is
I must say, this article from Fred Hutch did nothing to brighten my day. But, it did make me wash my hands (yet again). According to Dr. Steve Pergam, clinical and infectious disease researcher at Fred Hutch, patients with hematologic malignancies are at greatest risk from COVID-19. Of course, CLL is
Lily_Pad_Master
in
CLL Support
4 years ago
High risk for COVID-19 and receiving letters/contact from NHS
conditions, itās probably sensible to contact your specialists directly: - people who have received an organ transplant and remain on ongoing immunosuppression medication - people with cancer who are undergoing active chemotherapy or radiotherapy - people with cancers of the blood or bone marrow such as
leukaemia
conditions, itās probably sensible to contact your specialists directly: - people who have received an organ transplant and remain on ongoing immunosuppression medication - people with cancer who are undergoing active chemotherapy or radiotherapy - people with cancers of the blood or bone marrow such as
leukaemia
PMRpro
Ambassador
in
PMRGCAuk
4 years ago
LDH levels and myelofibrosis
So I have MF and my doctor is very pleased that my hemoglobin is stable at 10,9 for the last 6 weeks and my platelets are holding between 450 and 600. However, on Friday I went for my regular visit for lab work and my LDH shot up to almost 900, which it is very high for me. Iāve tried to find information
So I have MF and my doctor is very pleased that my hemoglobin is stable at 10,9 for the last 6 weeks and my platelets are holding between 450 and 600. However, on Friday I went for my regular visit for lab work and my LDH shot up to almost 900, which it is very high for me. Iāve tried to find information
Cja1956
in
MPN Voice
4 years ago
Acalabrutinib three weeks appointment
I donāt know where my previous post went. Very likely, I did something wrong, so here it goes. The only side effect was bad headache for one week after which it became dull and I donāt even need to take Tylenol. Some fatigue and less energy and that is all. šš» My results are: WBC low at 3.9,
I donāt know where my previous post went. Very likely, I did something wrong, so here it goes. The only side effect was bad headache for one week after which it became dull and I donāt even need to take Tylenol. Some fatigue and less energy and that is all. šš» My results are: WBC low at 3.9,
studebaker
in
CLL Support
4 years ago
MPN News for treatment primary myelofibrosis, post-PVMF, Post ET-MF and Primary myelofibrosis
Hello all. It has been a while but I wanted to share this latest info. The combination of panobinostat (Farydak) and ruxolitinib (Jakafi) demonstrated efficacy and a tolerable safety profile as a treatment for patients with primary myelofibrosis (PMF) and post-polycythemia veraārelated myelofibrosis
Hello all. It has been a while but I wanted to share this latest info. The combination of panobinostat (Farydak) and ruxolitinib (Jakafi) demonstrated efficacy and a tolerable safety profile as a treatment for patients with primary myelofibrosis (PMF) and post-polycythemia veraārelated myelofibrosis
mammared
in
MPN Voice
4 years ago
Analysing and Resequencing Gene Panels from the UK CLL4 trial (1999-2004) is helping patients today.
The CLL4 study compared conventional chlorambucil therapy versus fludarabine - alone or in combination with cyclophosphamide - note there was no Rituximab in those days. End points were: survival, response to therapy, duration of response, toxicity and quality of life. For patients who required further
The CLL4 study compared conventional chlorambucil therapy versus fludarabine - alone or in combination with cyclophosphamide - note there was no Rituximab in those days. End points were: survival, response to therapy, duration of response, toxicity and quality of life. For patients who required further
Jm954
Administrator
in
CLL Support
4 years ago
Generosity
The
Leukaemia
Foundation is aiming for zero deaths from blood cancer by 2035. It sure feels achievable with all these new treatments. My husband is still in deep remission on I & V captivate trial 2 and a half years in. My thoughts and best wishes to you all.
The
Leukaemia
Foundation is aiming for zero deaths from blood cancer by 2035. It sure feels achievable with all these new treatments. My husband is still in deep remission on I & V captivate trial 2 and a half years in. My thoughts and best wishes to you all.
catnapcrew
in
CLL Support
4 years ago
Official Government advice on who is in the āat riskā category for Covid-19
those who may be at particular risk due to complex health problems such as: People who have received an organ transplant and remain on ongoing immunosuppression medication People with cancer who are undergoing active chemotherapy or radiotherapy People with cancers of the blood or bone marrow such as
leukaemia
those who may be at particular risk due to complex health problems such as: People who have received an organ transplant and remain on ongoing immunosuppression medication People with cancer who are undergoing active chemotherapy or radiotherapy People with cancers of the blood or bone marrow such as
leukaemia
Bookworm55
in
NRAS
4 years ago
Unexplained Polycythemia
Hi there, I was just diagnosed with unexplained secondary polycythemia, I am negative for the JAK2 mutation but they haven't tested for Exon 12 yet. It seems they've done every test under the sun and cannot determine the cause of my polycythemia. It makes me wonder if I actually do have primary. I'm
Hi there, I was just diagnosed with unexplained secondary polycythemia, I am negative for the JAK2 mutation but they haven't tested for Exon 12 yet. It seems they've done every test under the sun and cannot determine the cause of my polycythemia. It makes me wonder if I actually do have primary. I'm
Confusedatpolycythem
in
MPN Voice
4 years ago
Acalabrutinib plus Obinutuzumab in Treatment-NaĆÆve and Relapsed/Refractory CLL
Overall response rates were 95% (treatment-naĆÆve) and 92% (relapsed/refractory). Thirty-two percent of treatment-naĆÆve and 8% of relapsed/refractory patients achieved complete remission. At 36 months, 94% (treatment-naĆÆve) and 88% (relapsed/refractory) were progression free. Acalabrutinib plus obinutuzumab
Overall response rates were 95% (treatment-naĆÆve) and 92% (relapsed/refractory). Thirty-two percent of treatment-naĆÆve and 8% of relapsed/refractory patients achieved complete remission. At 36 months, 94% (treatment-naĆÆve) and 88% (relapsed/refractory) were progression free. Acalabrutinib plus obinutuzumab
Jm954
Administrator
in
CLL Support
4 years ago
Corona risk after successful treatment?
I am wondering about the state of the immune system after successful treatment for CLL. My husband's bone marrow was MRD-negative 6 months ago, all blood tests good apart from slightly low lymphocytes. He has been told to expect long term remission. Is he now as likely as the average person to contract
I am wondering about the state of the immune system after successful treatment for CLL. My husband's bone marrow was MRD-negative 6 months ago, all blood tests good apart from slightly low lymphocytes. He has been told to expect long term remission. Is he now as likely as the average person to contract
photohound
in
CLL Support
4 years ago
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