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CAR-T coming to OSU Medical Center
Hi All, Having just returned from my 12 week Clinical Trial monitoring I got the first tangible hints that CAR-T (Chimeric Antigen Receptor – T cell) therapy is to become a reality at the James hospital at OSU Medical Center for CLL. I heard over a year ago that it was in the planning but while I was
Hi All, Having just returned from my 12 week Clinical Trial monitoring I got the first tangible hints that CAR-T (Chimeric Antigen Receptor – T cell) therapy is to become a reality at the James hospital at OSU Medical Center for CLL. I heard over a year ago that it was in the planning but while I was
ThreeWs
in
CLL Support
6 years ago
CLL confused
Hi everyone, I need some help. My husband who is now 82 was diagnosed 8 yrs ago and has been on watch and wait. He now needs chemo and will be offered chlorambucil within the next 2 weeks. We have been given all the paperwork and it is a bit frightening. He is worried about side effects given his age
Hi everyone, I need some help. My husband who is now 82 was diagnosed 8 yrs ago and has been on watch and wait. He now needs chemo and will be offered chlorambucil within the next 2 weeks. We have been given all the paperwork and it is a bit frightening. He is worried about side effects given his age
Pablo123
in
CLL Support
6 years ago
ET
A friend of mine has just been diagnosed with Essential Thrombocythemia a blood cancer, (or pre cancer). Does anyone know how, if at all, this relates to CLL or other blood cell mutation diseases? and what and when treatment is appropriate, beyond the usual W & W period.
A friend of mine has just been diagnosed with Essential Thrombocythemia a blood cancer, (or pre cancer). Does anyone know how, if at all, this relates to CLL or other blood cell mutation diseases? and what and when treatment is appropriate, beyond the usual W & W period.
RogerPinner
in
CLL Support
6 years ago
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Question about Sll/CLL
I am trying to figure out what the life expectancy is with Sll and CLL I’m 46 and was told I have sll a few weeks ago I have no symptoms. I have seen on the internet 2 things. Question 1. I have seen on the internet if you have a segment in chromosome 13 missing your prognosis is very good with a medium
I am trying to figure out what the life expectancy is with Sll and CLL I’m 46 and was told I have sll a few weeks ago I have no symptoms. I have seen on the internet 2 things. Question 1. I have seen on the internet if you have a segment in chromosome 13 missing your prognosis is very good with a medium
Ironj
in
CLL Support
6 years ago
New to this site
Hi everyone, Just found out about this site and I’m so happy to know I’m not alone. I was diagnosed with CLL sept 2016. Very early not even stage one but I was 40 y/o which is a little troubling. I haven’t heard much talk about marijuana as I live in a state where medical marijuana is allowed. I have
Hi everyone, Just found out about this site and I’m so happy to know I’m not alone. I was diagnosed with CLL sept 2016. Very early not even stage one but I was 40 y/o which is a little troubling. I haven’t heard much talk about marijuana as I live in a state where medical marijuana is allowed. I have
Pizzaboy
in
CLL Support
6 years ago
Clinical Trials for Blood Cancers: Webinar Wednesday, April 18, 2018 12:00 pm to 1:00 pm Eastern Time USA
How Can Participating in a Clinical Trial Help Me? http://links.leukemia-lymphoma.mkt7024.com/ctt?kn=6&ms=MzM3NjA0OTQS1&r=NzIwMTI5NTUzOTQzS0&b=0&j=MTI2MDU4NTE5MwS2&mt=1&rt=0 https://www.cancercoachlive.com/app/signup/LLS_PtEd_041818/formPage/0 The Leukemia & Lymphoma Society invites you to join a
How Can Participating in a Clinical Trial Help Me? http://links.leukemia-lymphoma.mkt7024.com/ctt?kn=6&ms=MzM3NjA0OTQS1&r=NzIwMTI5NTUzOTQzS0&b=0&j=MTI2MDU4NTE5MwS2&mt=1&rt=0 https://www.cancercoachlive.com/app/signup/LLS_PtEd_041818/formPage/0 The Leukemia & Lymphoma Society invites you to join a
lankisterguy
Volunteer
in
CLL Support
6 years ago
Marathon Des Sables Morocco 6th -16th April 2018
Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days ,self supported, across the Sahara desert to raise funds for MPN Voice , who do such exemplary work for people like me who have been diagnosed with myelofibrosis and others with Myeloproliferative Neoplasms. For details
Good afternoon Emily my youngest daughter will be running 6 marathons in 6 days ,self supported, across the Sahara desert to raise funds for MPN Voice , who do such exemplary work for people like me who have been diagnosed with myelofibrosis and others with Myeloproliferative Neoplasms. For details
Kevbroz
in
MPN Voice
6 years ago
I am confused on what we can post on this site.
I feel bad for all people with Cll Leukemia. I sometimes posted things that were natural should we just never post anything like that. When I see someone post something that is natural it makes me feel better that maybe one of us will be healed from God naturally. I feel really bad after someone tells
I feel bad for all people with Cll Leukemia. I sometimes posted things that were natural should we just never post anything like that. When I see someone post something that is natural it makes me feel better that maybe one of us will be healed from God naturally. I feel really bad after someone tells
hmo1
in
CLL Support
6 years ago
ZAP-70 information
Hi All, I am posting from the Cafe Kerouac In Columbus OH awaiting another 12 week monitoring session for my extended Clinical Trial using PCI-32765 (Ibrutinib). It has been 6 years and 9 months since I started therapy. From an anxious post by an HU CLL forum member over a high ZAP-70 report I got inspired
Hi All, I am posting from the Cafe Kerouac In Columbus OH awaiting another 12 week monitoring session for my extended Clinical Trial using PCI-32765 (Ibrutinib). It has been 6 years and 9 months since I started therapy. From an anxious post by an HU CLL forum member over a high ZAP-70 report I got inspired
ThreeWs
in
CLL Support
6 years ago
Jakafi scare - MPN Research Foundation reply
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Paul123456
in
MPN Voice
6 years ago
Should we be worried about this article in MPN Forum RE. Jakafi drug ????
Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article https://mpnforum.com/jakafi-warning-signs/ which I reads today about the trial drug Jakafi, which I currently take? Needless to say, it has
Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article https://mpnforum.com/jakafi-warning-signs/ which I reads today about the trial drug Jakafi, which I currently take? Needless to say, it has
chelsea1
in
MPN Voice
6 years ago
Navigating the Financial Maze for Cancer Survivorship Webinar by Leukemia & Lymphoma Society (LLS) USA
On behalf of The Leukemia & Lymphoma Society (LLS), we would like to announce a virtual lecture, Navigating the Financial Maze for Cancer Survivorship with featured speaker Joanna Fawzy Morales, Esq. Joanna Fawzy Morales, Esq. is a cancer rights attorney, author, speaker, and CEO of Triage Cancer
On behalf of The Leukemia & Lymphoma Society (LLS), we would like to announce a virtual lecture, Navigating the Financial Maze for Cancer Survivorship with featured speaker Joanna Fawzy Morales, Esq. Joanna Fawzy Morales, Esq. is a cancer rights attorney, author, speaker, and CEO of Triage Cancer
lankisterguy
Volunteer
in
CLL Support
6 years ago
Booklet update: Stem Cell transplants + AML treatments
Just a quick update on new booklets available from
Leukaemia
Care Allogeneic Stem Cell transplants Autologous Stem Cell Transplants DA (Daunarubicin) and ARAc (Cytarabine) for Acute Myeloid
Leukaemia
FLAG-Ida for Acute Myeloid
Leukaemia
(AML) Hydroxycarbamide for Acute Myeloid
Leukaemia
(AML) Low dose
Just a quick update on new booklets available from
Leukaemia
Care Allogeneic Stem Cell transplants Autologous Stem Cell Transplants DA (Daunarubicin) and ARAc (Cytarabine) for Acute Myeloid
Leukaemia
FLAG-Ida for Acute Myeloid
Leukaemia
(AML) Hydroxycarbamide for Acute Myeloid
Leukaemia
(AML) Low dose
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
6 years ago
Secondary Erythrocytosis
I have been diagnosed with secondary erythrocytosis. My gp said I had polychemia Vera. I’m seeing the haemotologist in April but I’m confused. Anybody clear this up for me ? Obviously I will ask . I had a blood clot and thrombophlebitis last week and is ongoing. Any advice ?
I have been diagnosed with secondary erythrocytosis. My gp said I had polychemia Vera. I’m seeing the haemotologist in April but I’m confused. Anybody clear this up for me ? Obviously I will ask . I had a blood clot and thrombophlebitis last week and is ongoing. Any advice ?
Kwebb
in
MPN Voice
6 years ago
83 year old dad diagnosed with stage 4 CLL/SLL. Doc wants to start Rituxan (once a week for 4weeks) then Ibrutinub. Does this seem right????
I have searched over and over, and I can’t find anywhere that Rituxan is first line therapy for stage 4 CLL/SLL. So confused!
I have searched over and over, and I can’t find anywhere that Rituxan is first line therapy for stage 4 CLL/SLL. So confused!
Jenette01
in
CLL Support
6 years ago
LLS Webinar: What’s on the Horizon for Chronic Lymphocytic Leukemia (CLL)?
Thursday, May 8, 2018, 12-130 PM. Details are available at www.LLS.org/programs Presented by: Matthew S. Davids, MD, MMSc Assistant Professor of Medicine, Harvard Medical School Director, Lymphoma BioBank Associate Director, CLL Center Dana-Farber Cancer Institute Boston, MA
Thursday, May 8, 2018, 12-130 PM. Details are available at www.LLS.org/programs Presented by: Matthew S. Davids, MD, MMSc Assistant Professor of Medicine, Harvard Medical School Director, Lymphoma BioBank Associate Director, CLL Center Dana-Farber Cancer Institute Boston, MA
wmay13241
in
CLL Support
6 years ago
Promising results for MF Trial - Pacritinib
https://jamanetwork.com/journals/jamaoncology/fullarticle/2674384 A trial comparing pacritinib daily dose of 400mg versus pacritinib daily 2 x 200mg versus Best Available Therapy (BAT). BAT was primarily Ruxo/Jakafi. Perhaps the most interesting bit is the number of participants who switched mid trial
https://jamanetwork.com/journals/jamaoncology/fullarticle/2674384 A trial comparing pacritinib daily dose of 400mg versus pacritinib daily 2 x 200mg versus Best Available Therapy (BAT). BAT was primarily Ruxo/Jakafi. Perhaps the most interesting bit is the number of participants who switched mid trial
Paul123456
in
MPN Voice
6 years ago
Flair Trial and Co- Trimoxazole
Hi I'm on the Flair Trial in the uk I've been on Idrutinib for 21 months . Went yesterday for my 3 monthly check. Bloods and examination and all Is good , bloods are near normal, no enlarged nodes , usual few side effects a little bit of petechiae diarrhoea a few mouth sores ,See my specialist again
Hi I'm on the Flair Trial in the uk I've been on Idrutinib for 21 months . Went yesterday for my 3 monthly check. Bloods and examination and all Is good , bloods are near normal, no enlarged nodes , usual few side effects a little bit of petechiae diarrhoea a few mouth sores ,See my specialist again
Chuddie48
in
CLL Support
6 years ago
Appointment with Radiologist
Attended hospital today for first appointment with radiologist who advised that I could have a “one off “ dose of radiology to hopefully shrink the tumour on my right lung to prevent it spreading into the spinal cord (it has attached itself to my spine already). Have to attend the hospital tomorrow
Attended hospital today for first appointment with radiologist who advised that I could have a “one off “ dose of radiology to hopefully shrink the tumour on my right lung to prevent it spreading into the spinal cord (it has attached itself to my spine already). Have to attend the hospital tomorrow
Lmax
in
Lung Conditions Community Forum
6 years ago
Second Opinion CLL
Just a side note to all my Unlocked friends. My first Oncologist tested me (bone Marrow sample and blood test) and told me I had stage 2 lymphoma. This was a fairly well respected doctor and I had no reason to doubt her. My wife kept pestering me to get a second opinion which I finally gave into and
Just a side note to all my Unlocked friends. My first Oncologist tested me (bone Marrow sample and blood test) and told me I had stage 2 lymphoma. This was a fairly well respected doctor and I had no reason to doubt her. My wife kept pestering me to get a second opinion which I finally gave into and
barger1951
in
CLL Support
6 years ago
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