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CLL Society Alert -USA Patient Support Groups & Educational Meetings - Free 2nd Opinions by Video conference & Financial Assistance
See http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=b6383392-2aad-42b8-b327-03126332eac0 for a more readable image with active links. Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a huge change in his life as he retires from family medicine to devote
See http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=b6383392-2aad-42b8-b327-03126332eac0 for a more readable image with active links. Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a huge change in his life as he retires from family medicine to devote
lankisterguy
Volunteer
in
CLL Support
6 years ago
Tick vaccination
Hello After Venetoclax and Obinutuzumab I am mrd- both in PB and marrow. I would like to get vaccination against ticks (TBE). Has anybody experience if it will work in CLL patients. Many thanks Reinhard
Hello After Venetoclax and Obinutuzumab I am mrd- both in PB and marrow. I would like to get vaccination against ticks (TBE). Has anybody experience if it will work in CLL patients. Many thanks Reinhard
Reinhard
in
CLL Support
6 years ago
Steroid pump for secondary adrenal insufficiency with traumatic brain injury
Hi. I’m new on this site but I wanted to share my AI stories, answer some questions and hopefully find some more resources to help us with this challenging condition. I’m reading that a lot of people on this site seem to be taking their steroids orally. I too was started on oral medication, dexamethasone
Hi. I’m new on this site but I wanted to share my AI stories, answer some questions and hopefully find some more resources to help us with this challenging condition. I’m reading that a lot of people on this site seem to be taking their steroids orally. I too was started on oral medication, dexamethasone
Poodlepost
in
Thyroid UK
6 years ago
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Chemo-Free Treatment Best Option for CLL Patients Under 70
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
GlennSabin
in
CLL Support
6 years ago
CLL Education Program w Adrien Wiestner in Baltimore
I was reading my Sunday newspaper this morning and saw an add from the Leukemia & Lymphoma Society. Adrian Wiestner, MD, PhD who is the senior investigator at the National Institute of Health along with Susan Soto, research nurse will be presenting an Education Program on CLL in Pikesville which is in
I was reading my Sunday newspaper this morning and saw an add from the Leukemia & Lymphoma Society. Adrian Wiestner, MD, PhD who is the senior investigator at the National Institute of Health along with Susan Soto, research nurse will be presenting an Education Program on CLL in Pikesville which is in
PSP52
in
CLL Support
6 years ago
Prednisolone
Is anyone taking this medication continuously , they only give it to me for 5 days at a time , I think it helps , But when I,m off it I get worse again , I have mild to moderate copd. They changed my inhaler too today from ventolin to Atrovent and I take Anoro in the morning , Is Anoro any better
Is anyone taking this medication continuously , they only give it to me for 5 days at a time , I think it helps , But when I,m off it I get worse again , I have mild to moderate copd. They changed my inhaler too today from ventolin to Atrovent and I take Anoro in the morning , Is Anoro any better
Elpojohn
in
Lung Conditions Community Forum
6 years ago
FYI/Trial data to be discussed this weekend
In CLL, there are multiple trials of interest being presented with the potential to have an impact on practice, including the phase III Alliance North American Intergroup Study A041202 exploring ibrutinib alone or in combination with rituximab vs standard chemoimmunotherapy with bendamustine plus rituximab
In CLL, there are multiple trials of interest being presented with the potential to have an impact on practice, including the phase III Alliance North American Intergroup Study A041202 exploring ibrutinib alone or in combination with rituximab vs standard chemoimmunotherapy with bendamustine plus rituximab
Newchallnge
in
CLL Support
6 years ago
ASH 2018 and More
Hi, This is the most exciting, hectic and rewarding time of the year for the CLL Society, as we are soon headed to ASH 2018 in San Diego to bring back the information that will make you a smarter patient. Every year we are filled with amazement and gratitude for the unstoppable energy expended by clinical
Hi, This is the most exciting, hectic and rewarding time of the year for the CLL Society, as we are soon headed to ASH 2018 in San Diego to bring back the information that will make you a smarter patient. Every year we are filled with amazement and gratitude for the unstoppable energy expended by clinical
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Watch & Wait -- Online Webinar Nov 28, 2018 - Patient Power - Dr. Philip Thompson & Dr. Jackie Broadway-Duren
Register now- https://www.patientpower.info/nov28#register Many CLL patients wonder: “What is watch and wait? Why am I not being treated immediately after my diagnosis?” On November 28 at 1 PM CT (2 PM ET, 11 AM PT), join Patient Power and CLL Global Research Foundation for a one-hour webinar, “Understanding
Register now- https://www.patientpower.info/nov28#register Many CLL patients wonder: “What is watch and wait? Why am I not being treated immediately after my diagnosis?” On November 28 at 1 PM CT (2 PM ET, 11 AM PT), join Patient Power and CLL Global Research Foundation for a one-hour webinar, “Understanding
lankisterguy
Volunteer
in
CLL Support
6 years ago
SUGER level
I am currently taking Amaryl 3mg ,Galvus 50 and enforce for SUGER and BP control also taking 10unit insulin in night but i am not happy with reports . Some body may help me.
I am currently taking Amaryl 3mg ,Galvus 50 and enforce for SUGER and BP control also taking 10unit insulin in night but i am not happy with reports . Some body may help me.
Vighnesh1
in
Diabetes India
6 years ago
CLL and CFS
I was diagnosed with CLL just over a year ago about a month after another episode of CFS (Chronic Fatigue Syndrome) started. I went on holiday to France and spent two weeks lying on a bed and had to get a wheelchair to get to the plane for my flight home. A year later I started to improve and now, two
I was diagnosed with CLL just over a year ago about a month after another episode of CFS (Chronic Fatigue Syndrome) started. I went on holiday to France and spent two weeks lying on a bed and had to get a wheelchair to get to the plane for my flight home. A year later I started to improve and now, two
shornoff
in
CLL Support
6 years ago
2 weeks post Lap - return to work
Morning All, I am due back to work tomorrow and am debating whether to go or not. I had my 3rd lap on 12th October and they ended up doing a polypectomy, cystoscopy, hysteroscopy. I has stage 3 endo rediagnosed so to speak and also pelvic congestion. Since August I have had severe chest pain every time
Morning All, I am due back to work tomorrow and am debating whether to go or not. I had my 3rd lap on 12th October and they ended up doing a polypectomy, cystoscopy, hysteroscopy. I has stage 3 endo rediagnosed so to speak and also pelvic congestion. Since August I have had severe chest pain every time
Endoangel83
in
Endometriosis UK
6 years ago
Breaking news form ASH conference: looks like Ibrutinib May be better than FCR for some patients
#ASH18 #LBA | A Randomized Phase III Study of Ibrutinib (PCI-32765)-Based Therapy Vs. Standard Fludarabine, Cyclophosphamide, and Rituximab (FCR) Chemoimmunotherapy in Untreated Younger Patients with Chronic Lymphocytic Leukemia (CLL) | #leusm ash.confex.com/ash/2018/webpr…
#ASH18 #LBA | A Randomized Phase III Study of Ibrutinib (PCI-32765)-Based Therapy Vs. Standard Fludarabine, Cyclophosphamide, and Rituximab (FCR) Chemoimmunotherapy in Untreated Younger Patients with Chronic Lymphocytic Leukemia (CLL) | #leusm ash.confex.com/ash/2018/webpr…
Newchallnge
in
CLL Support
6 years ago
And back to plan B?
After deciding on Saturday that I would do my polypectomy in Greece rather than on the NHS, I have just received a reply from my clinic stating they can do the operation only on weekdays, not on Saturday, which is what they originally told me. This means I can't do it after all, not until March or April
After deciding on Saturday that I would do my polypectomy in Greece rather than on the NHS, I have just received a reply from my clinic stating they can do the operation only on weekdays, not on Saturday, which is what they originally told me. This means I can't do it after all, not until March or April
Tomorrow_1
in
Fertility Network UK
6 years ago
Tisomy 12
Dx 203 CLL in Feb 2013,male, living in India, watch and wait till last week. I am Ighv mutated and no Zap 70 and CD 38. My Fish test revealed no genetic deletion Like 17p, 13q, 11q. Due to gradual fall of Hb to 8 and lymphocytes around 100k, I was advised B R chemo immunotherapy and stated on November
Dx 203 CLL in Feb 2013,male, living in India, watch and wait till last week. I am Ighv mutated and no Zap 70 and CD 38. My Fish test revealed no genetic deletion Like 17p, 13q, 11q. Due to gradual fall of Hb to 8 and lymphocytes around 100k, I was advised B R chemo immunotherapy and stated on November
venk_46
in
CLL Support
6 years ago
Wife just diagnosed with CLL too!
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
Walt424
in
CLL Support
6 years ago
CAR-T Cell expert Dr. Utkarsh Acharya online; CAR-T Patient Dr. Brian Koffman at CLL Society Support Meetings- Philadelphia & New York City
This week there are several opportunities to learn more about CAR-T http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=8ae5639f-9cb3-476f-8278-85bec8eb87ec - Online we hear again from Dr. Utkarsh Acharya on his perspective of caring for CAR-T patients including our own Dr. Koffman. https
This week there are several opportunities to learn more about CAR-T http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=8ae5639f-9cb3-476f-8278-85bec8eb87ec - Online we hear again from Dr. Utkarsh Acharya on his perspective of caring for CAR-T patients including our own Dr. Koffman. https
lankisterguy
Volunteer
in
CLL Support
6 years ago
Confusing journey of borderline cancer
Hello, I’ve signed up here to find women who are in a similar journey as I am. I quit my job in November 2017 due to overwhelming stress. Just four days after my last day of work, I went to see my GP to consult about my worrisome period in October (as I never had the chance to consult about it). My
Hello, I’ve signed up here to find women who are in a similar journey as I am. I quit my job in November 2017 due to overwhelming stress. Just four days after my last day of work, I went to see my GP to consult about my worrisome period in October (as I never had the chance to consult about it). My
purejoy12
in
My Ovacome
6 years ago
Help! new to all this
Hi, this is my 12th week of continuous bleeding and pain, had an urgent gynae appointment last week, the Dr attempted an internal which literally had me on the ceiling! Im now going for a hysteroscopy (due to endometrial thickening) & polypectomy under a GA next week. The Dr stated that I may have some
Hi, this is my 12th week of continuous bleeding and pain, had an urgent gynae appointment last week, the Dr attempted an internal which literally had me on the ceiling! Im now going for a hysteroscopy (due to endometrial thickening) & polypectomy under a GA next week. The Dr stated that I may have some
bonker07
in
Adenomyosis Advice Association
6 years ago
Is Green Tea and Matcha powder same, similar?
Hello All, I've always experienced a benefit from simply drinking green. Over the course of my life, when I was a green tea drinker I had far fewer colds/sinus infections etc than those times when I was a coffee drinker. Anyway, as a W&W CLL person since 2015 I've been increasingly going alternative
Hello All, I've always experienced a benefit from simply drinking green. Over the course of my life, when I was a green tea drinker I had far fewer colds/sinus infections etc than those times when I was a coffee drinker. Anyway, as a W&W CLL person since 2015 I've been increasingly going alternative
jawdfs
in
CLL Support
6 years ago
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