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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
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
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New Directions in CLL: A Review of 2019 Treatment Guideline Updates in USA
Unmutated IGHV[/i] Details Here: https://www.onclive.com/publications/special-issues/2019/changing-chronic-
lymphocytic
-
leukemia
/new-directions-in-chronic-
lymphocytic
-
leukemia
-care-a-review-of-2019-treatment-guideline-updates? Jackie
Unmutated IGHV[/i] Details Here: https://www.onclive.com/publications/special-issues/2019/changing-chronic-
lymphocytic
-
leukemia
/new-directions-in-chronic-
lymphocytic
-
leukemia
-care-a-review-of-2019-treatment-guideline-updates? Jackie
Jm954
Administrator
in
CLL Support
5 years ago
ASH 2018: Dr. Lindsey Roeker, on real world use of venetoclax for CLL (chronic lymphocytic leukemia)
Roeker to get the comforting news: https://cllsociety.org/2019/06/ash-2018-dr-lindsey-roeker-on-real-world-use-of-venetoclax-for-cll-chronic-
lymphocytic
-
leukemia
/
Roeker to get the comforting news: https://cllsociety.org/2019/06/ash-2018-dr-lindsey-roeker-on-real-world-use-of-venetoclax-for-cll-chronic-
lymphocytic
-
leukemia
/
bkoffman
CLL CURE Hero
in
CLL Support
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
Dr Brian Koffman recent Irish radio interview about CAR T
It has already resulted in dramatically improved outcomes from many people suffering from different blood cancers - one of which being ‘Chronic
Lymphocytic
Leukemia
’ or CLL for short. Dr.
It has already resulted in dramatically improved outcomes from many people suffering from different blood cancers - one of which being ‘Chronic
Lymphocytic
Leukemia
’ or CLL for short. Dr.
Irishcll
in
CLL Support
5 years ago
Hi I’m new here from across the pond.
Recently diagnosed with hashimotos and chronic
lymphocytic
leukemia
. My oncologist ordered new tests and ANA ENA came back positive. RNA positive and DS dna neg. The appointment with the rheumatologist isn’t till August. Wondering what those results are indicative of.
Recently diagnosed with hashimotos and chronic
lymphocytic
leukemia
. My oncologist ordered new tests and ANA ENA came back positive. RNA positive and DS dna neg. The appointment with the rheumatologist isn’t till August. Wondering what those results are indicative of.
sbkris1
in
LUPUS UK
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
Worried about low platelets - do I have Chronic Lymphocytic Leukemia? (CLL/SLL) When will I need treatment?
Idiopathic thrombocytopenic purpura (ITP) or immune thrombocytopenia, an immune disorder that is more common when you have Chronic
Lymphocytic
Leukemia
/ Small
Lymphocytic
Lymphoma (CLL/SLL) is also a possibility.
Idiopathic thrombocytopenic purpura (ITP) or immune thrombocytopenia, an immune disorder that is more common when you have Chronic
Lymphocytic
Leukemia
/ Small
Lymphocytic
Lymphoma (CLL/SLL) is also a possibility.
AussieNeil
Partner
in
CLL Support
5 years ago
Chronic lymphocytic leukemia/B-cell prolymphocytic leukemia. A tutorial for physicians, useful for us too.
From Feb 2019 An extensive overview of CLL, directed at educating PCPs or GPs covering all aspects of the disease, investigation and treatment. https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/chronic-
lymphocytic
-
leukemia
-b-cell-prolymphocytic-leukemia-2/ Jackie
From Feb 2019 An extensive overview of CLL, directed at educating PCPs or GPs covering all aspects of the disease, investigation and treatment. https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/chronic-
lymphocytic
-
leukemia
-b-cell-prolymphocytic-leukemia-2/ Jackie
Jm954
Administrator
in
CLL Support
5 years ago
CLL-ipi; is it accurate?????
https://www.mdcalc.com/international-prognostic-index-chronic-
lymphocytic
-
leukemia
-cll-ipi#why-use I just came across this index online. Have others seen it? Is it accurate? I think it was created to give doctors an idea of risk level for determining treatment.
https://www.mdcalc.com/international-prognostic-index-chronic-
lymphocytic
-
leukemia
-cll-ipi#why-use I just came across this index online. Have others seen it? Is it accurate? I think it was created to give doctors an idea of risk level for determining treatment.
Sunfishjoy
in
CLL Support
5 years ago
Saga continued.......
Well, Neuro didn't have great news but has decided to get me to have an ambulatory EMG over 3 days. I will stop anti seizure meds 1 week before and *maybe* pick up an anomaly during the 3 days I'm wired up. Still off driving for 6 months and has strongly advised against my planned trip to KL in 4
Well, Neuro didn't have great news but has decided to get me to have an ambulatory EMG over 3 days. I will stop anti seizure meds 1 week before and *maybe* pick up an anomaly during the 3 days I'm wired up. Still off driving for 6 months and has strongly advised against my planned trip to KL in 4
Ozchick
in
Hughes Syndrome APS Forum
5 years ago
Tiredness and essential thrombocythemia
Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is 77 but otherwise fit and well and has always been active and walking dogs etc. The tiredness gets her down and depressed. Her consultants just
Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is 77 but otherwise fit and well and has always been active and walking dogs etc. The tiredness gets her down and depressed. Her consultants just
Monkobutlers
in
MPN Voice
5 years ago
More CAR-T: Looking Back to Go Forward in CAR-T Cell Therapy in R/R CLL
More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-looking-forward-in-cart-cell-therapy-with-ibrutinib/ Jackie
More here: https://www.cancertherapyadvisor.com/home/cancer-topics/chronic-
lymphocytic
-
leukemia
/chronic-leukemia-cll-looking-forward-in-cart-cell-therapy-with-ibrutinib/ Jackie
Jm954
Administrator
in
CLL Support
5 years ago
Major breakthrough in the treatment of leukemia
"It's important to understand that both myeloid
leukemia
and
lymphocytic
leukemia
[i]
are a combination of approximately twenty different genetic diseases
[/i]," explained Sauvageau. [i]"What we call 'leukemia' is actually the group of symptoms caused by these diseases.
"It's important to understand that both myeloid
leukemia
and
lymphocytic
leukemia
[i]
are a combination of approximately twenty different genetic diseases
[/i]," explained Sauvageau. [i]"What we call 'leukemia' is actually the group of symptoms caused by these diseases.
socrates_8
in
MPN Voice
5 years ago
Dr. Shadman on Fixed Durations of Treatment in CLL
leukemia
(CLL).
leukemia
(CLL).
Jm954
Administrator
in
CLL Support
5 years ago
Scottish Medicines Consortium approves Venetoclax + Rituximab Treatment for relapsed/refractory CLL
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Jm954
Administrator
in
CLL Support
5 years ago
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