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Update after 6th RCHOP for follicular NHL
Hi, I had my PET scan last week after my 6th cycle of RCHOP. It came back clear with not activity, so I'm officially in now in remission! Have to get a shot of Rituximab in belly every 3 months for 2 years. This is for maintenance to make sure it doesn't come back. A 15 minute jab. Chemo is a feared
Hi, I had my PET scan last week after my 6th cycle of RCHOP. It came back clear with not activity, so I'm officially in now in remission! Have to get a shot of Rituximab in belly every 3 months for 2 years. This is for maintenance to make sure it doesn't come back. A 15 minute jab. Chemo is a feared
Russ70
in
Non Hodgkin's Lymphoma Friends
4 years ago
What are Tocilizumab and Sarilumab treatments for COVID?
The REMPA-CPAP Clinical trial results show that the drugs reduced the risk of death by 24% for critically ill patients and reduced the time spent in intensive care by up to 10 days. In light of these results, the UK government has said that supplies of tocilizumab are already available in hospitals
The REMPA-CPAP Clinical trial results show that the drugs reduced the risk of death by 24% for critically ill patients and reduced the time spent in intensive care by up to 10 days. In light of these results, the UK government has said that supplies of tocilizumab are already available in hospitals
Jm954
Administrator
in
CLL Support
4 years ago
I don’t have CLL. Do you also post about CNS lymphomas?
Do you also post about ibrutinib use with CNS
lymphomas
?
Do you also post about ibrutinib use with CNS
lymphomas
?
Lemur2020
in
CLL Support
4 years ago
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Friday 15th January, 2pm Webinar - COVID-19 vaccines – your questions answered
Two of our partner charities - Leukaemia Care and Lymphoma Action are to host this joint webinar for those living with lymphoma and leukaemia.
Date: Friday 15 January
Time: 2pm
The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with
Two of our partner charities - Leukaemia Care and Lymphoma Action are to host this joint webinar for those living with lymphoma and leukaemia.
Date: Friday 15 January
Time: 2pm
The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with
Jm954
Administrator
in
CLL Support
4 years ago
Good end to a bad year... My MRD Results are in!
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
As many of you know, I enrolled in a clinical trial for experimental treatment with the goal to reduce MRD to zero. (Minimal (or Measurable) residual disease Description:Minimal residual disease is the name given to small numbers of leukaemic cells that remain in the person during treatment, or after
MikeHoff
in
CLL Support
4 years ago
CAR-T! Laurie Adami tells the riveting tale of her diagnosis at the age of 46 ...
CAR-T! Laurie Adami tells the riveting tale of her diagnosis at the age of 46 with stage IV follicular non-Hodgkin lymphoma, an incurable blood cancer, after years of consulting doctors who were either baffled by, or just plain off-base in their assessment of her presenting symptoms. In March 2018, after
CAR-T! Laurie Adami tells the riveting tale of her diagnosis at the age of 46 with stage IV follicular non-Hodgkin lymphoma, an incurable blood cancer, after years of consulting doctors who were either baffled by, or just plain off-base in their assessment of her presenting symptoms. In March 2018, after
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Mrs Cropley’s Christmas Creation: Ginger and Honey Latte!
Hello everyone - here’s a winter warmer to spread some cheer at this very tricky time. Not really an original recipe but I was inspired to make it after receiving a lovely Christmas gift of pantry goodies that included crystallised ginger and raw honeycomb! (Naughty me couldn’t wait until Christmas Day
Hello everyone - here’s a winter warmer to spread some cheer at this very tricky time. Not really an original recipe but I was inspired to make it after receiving a lovely Christmas gift of pantry goodies that included crystallised ginger and raw honeycomb! (Naughty me couldn’t wait until Christmas Day
Horsewhisper
in
LUPUS UK
4 years ago
Help with Non Hodkin’s Lymphoma
Hello I’m new here. I have just started a new regimen of treatment for Follicular Lymphoma. The first regimen R-CHOP got rid of the lump in my groin but unfortunately the lumps in my chest and neck resisted the treatment. My consultant told me this is not a good sign and he is concerned. They are communicating
Hello I’m new here. I have just started a new regimen of treatment for Follicular Lymphoma. The first regimen R-CHOP got rid of the lump in my groin but unfortunately the lumps in my chest and neck resisted the treatment. My consultant told me this is not a good sign and he is concerned. They are communicating
Charlie120920
in
Non Hodgkin's Lymphoma Friends
4 years ago
Mrs Cropley’s Copy Coffee Creations! Gingerbread Latte!
Evening peeps! Here’s what’s on the menu today if you fancy a quick cyber drive-thru? It’s pretty fiery - ideal for chilly winter evenings, by all means adjust the ginger to taste along with the amount of sugar and coffee that you normally like. So I simmered 2 mugs of whole farm milk with one heaped
Evening peeps! Here’s what’s on the menu today if you fancy a quick cyber drive-thru? It’s pretty fiery - ideal for chilly winter evenings, by all means adjust the ginger to taste along with the amount of sugar and coffee that you normally like. So I simmered 2 mugs of whole farm milk with one heaped
Horsewhisper
in
LUPUS UK
4 years ago
LDH Results
I have been on impruvica since April 13 and after 4 or 5 months it was helping my blood counts . This past November 12 I needed mohs surgery to remove basil carcinoma cancer cells on the tip of my eyelid . That surgery was successful . However I needed reconstruction surgery on November 16 for my eyelid
I have been on impruvica since April 13 and after 4 or 5 months it was helping my blood counts . This past November 12 I needed mohs surgery to remove basil carcinoma cancer cells on the tip of my eyelid . That surgery was successful . However I needed reconstruction surgery on November 16 for my eyelid
Kmegood
in
CLL Support
4 years ago
Increasing LDH
Hi everyone! I’m a longtime reader, first time poster. I was diagnosed with CLL at 45, waited and watched for one year, then started treatment due to splenomegally and super high wbc. Joined a trial of obinituzimab, ibrutinib, and venetoclax. I’m on cycle 13 and numbers in general have been doing well
Hi everyone! I’m a longtime reader, first time poster. I was diagnosed with CLL at 45, waited and watched for one year, then started treatment due to splenomegally and super high wbc. Joined a trial of obinituzimab, ibrutinib, and venetoclax. I’m on cycle 13 and numbers in general have been doing well
RSSpoke
in
CLL Support
4 years ago
Angioimmunoblastic T-Cell Lymphoma
I was diagnosed with stage 3 ATCL, originally the Dr prescriber steroids but later said that due to my age (55) and physical condition we should go straight to chemotherapy. He will be discussing treatment today, what drugs and regiment should I expect to hear? Thx for your comments.
I was diagnosed with stage 3 ATCL, originally the Dr prescriber steroids but later said that due to my age (55) and physical condition we should go straight to chemotherapy. He will be discussing treatment today, what drugs and regiment should I expect to hear? Thx for your comments.
Lovewpb
in
Lymphoma Canada
4 years ago
CLL Aussie voices study - last call to add your voice to the PEEK study
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
AussieNeil
Partner
in
CLL Support
4 years ago
TPLL
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
Whatadayitwas
in
CLL Support
4 years ago
Rosemary - another anti-leukemia spice!
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
HowardR
in
CLL Support
4 years ago
Update from my Appointment
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Moonmyst
in
CLL Support
4 years ago
CLL Australian Webinar 21 October 2020. Keynote speaker Prof Peter Hillmen, Leeds UK. Interview of Sharon Winton CEO Lymphoma Australia, Q&A
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
AussieNeil
Partner
in
CLL Support
4 years ago
TREATMENT OPTION FOR TRISOMY 12
Hi Dr. Aussie Neil! I am pleased to write to you once again about my test result. As i previously indicated, a year ago i was diagnosed with CLL Rai Stage II B and put on R-CVP chemoimmunoterapy and now 4 months since i took the last 6th infusion of 6 cycles recommended for my treatment. But still i
Hi Dr. Aussie Neil! I am pleased to write to you once again about my test result. As i previously indicated, a year ago i was diagnosed with CLL Rai Stage II B and put on R-CVP chemoimmunoterapy and now 4 months since i took the last 6th infusion of 6 cycles recommended for my treatment. But still i
amaagabg2020
in
CLL Support
4 years ago
Ultra V - Cycle 4
Hi, all, I wanted to give an update on my husbands progress in the Ultra V trial (3 drug combo:Ublituximab, Umbrilisib, & Venetoclax) . (For reference - ha - this is his first treatment, 13q, unmutated, Notch1) He is almost done with Cycle 4, which is the cycle where Venetoclax is added/ramping.
Hi, all, I wanted to give an update on my husbands progress in the Ultra V trial (3 drug combo:Ublituximab, Umbrilisib, & Venetoclax) . (For reference - ha - this is his first treatment, 13q, unmutated, Notch1) He is almost done with Cycle 4, which is the cycle where Venetoclax is added/ramping.
WDSmith
in
CLL Support
4 years ago
Some good news and hope
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
Irishcll
in
CLL Support
4 years ago
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