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Small lymphocytic lymphoma (SLL)
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First line treatment failure. Transformation.
My father has been on the combination obinutuzamb/venetoclax first line treatment for CLL with aggressive features since March 2020, and had his one year CT scan yesterday. We were so hopeful that Plan 1 would be promising, yet the results are very troubling. -CT Results: 1. There is new perirenal
My father has been on the combination obinutuzamb/venetoclax first line treatment for CLL with aggressive features since March 2020, and had his one year CT scan yesterday. We were so hopeful that Plan 1 would be promising, yet the results are very troubling. -CT Results: 1. There is new perirenal
Phs2385
in
CLL Support
3 years ago
Hope you are all well.I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020.I have been having
Hope you are all well. I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020. I have been having regular blood tests which has shown that the cancerous cells have not increased and the haemoglobin levels are low but stable. I do not have any classic symptoms as
Hope you are all well. I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020. I have been having regular blood tests which has shown that the cancerous cells have not increased and the haemoglobin levels are low but stable. I do not have any classic symptoms as
bridgeoverriverkwai
in
Non Hodgkin's Lymphoma Friends
3 years ago
Covid Vaccine
Hi all hope you are all keeping safe a question i need some light on has anyone had the Covid vaccine with having a low platelet count (Thrombocytopenia )mine being 50 i have been hearing a lot who have had the vaccine and its made Platelet count drop i really dont want mine to drop any lower and
Hi all hope you are all keeping safe a question i need some light on has anyone had the Covid vaccine with having a low platelet count (Thrombocytopenia )mine being 50 i have been hearing a lot who have had the vaccine and its made Platelet count drop i really dont want mine to drop any lower and
cavi
in
PBC Foundation
3 years ago
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Ginger while on Warfarin?
I read a recent article about the positive effect of ginger on APS and Lupus in mice. Has anyone taken ginger supplements or ginger tea while on Warfarin? I know that ginger can interact with Warfarin but I am wondering if anyone has tried both at the same time. Thank you!
I read a recent article about the positive effect of ginger on APS and Lupus in mice. Has anyone taken ginger supplements or ginger tea while on Warfarin? I know that ginger can interact with Warfarin but I am wondering if anyone has tried both at the same time. Thank you!
Or81
in
Hughes Syndrome APS Forum
3 years ago
Hemoglobin
Dx in 2013 and have been treated with Ibrutinib then Venetoclax. Overall I have done well but over the last year my Hg has begun a slow trend of decrease, now in 11s. I realize that is not at all dangerous but I do get winded with any vigorous activity or when I travel to the mountains. I take the B
Dx in 2013 and have been treated with Ibrutinib then Venetoclax. Overall I have done well but over the last year my Hg has begun a slow trend of decrease, now in 11s. I realize that is not at all dangerous but I do get winded with any vigorous activity or when I travel to the mountains. I take the B
Fant1924
in
CLL Support
3 years ago
Organic apple cider vinegar "unpasteurized and unfiltered" ?
I am starting to use a very small quantity (spoons full ) of organic apple cider vinegar to spice-up vegetable puree. Can I use the "organic apple cider vinegar" which "unpasteurized and unfiltered" ? I have CLL under near normal CBC control with IMBRUVICA. Also, what if any benefit would any small
I am starting to use a very small quantity (spoons full ) of organic apple cider vinegar to spice-up vegetable puree. Can I use the "organic apple cider vinegar" which "unpasteurized and unfiltered" ? I have CLL under near normal CBC control with IMBRUVICA. Also, what if any benefit would any small
janvog
in
CLL Support
3 years ago
Bispecific T-Cell Engagers (BiTEs) and Mantle Cell Lymphoma
Hi Everyone, haven't been here for ages. Misdiagnosed with CLL in 2014. Turned out to be MCL/CLL hybrid. Auto SCT May 2016 which held 'til now. Just started on Ibrutinib. Very excited about this: https://www.youtube.com/watch?v=SZlvJbCTJts&t=3s Potentially, more effective than CAR-T and less invasive
Hi Everyone, haven't been here for ages. Misdiagnosed with CLL in 2014. Turned out to be MCL/CLL hybrid. Auto SCT May 2016 which held 'til now. Just started on Ibrutinib. Very excited about this: https://www.youtube.com/watch?v=SZlvJbCTJts&t=3s Potentially, more effective than CAR-T and less invasive
zentangle
in
Non Hodgkin's Lymphoma Friends
3 years ago
11q and 17p
I have read on the Fact Sheet about Test Before Treat that if a Fish Test shows a deletion of the 17 chromosome or del(17P) that BR treatment will not be effective and should be avoided. I am 11q deleted and had one treatment of BR some 23 months ago (March 2019) with a severe reaction. I have not had
I have read on the Fact Sheet about Test Before Treat that if a Fish Test shows a deletion of the 17 chromosome or del(17P) that BR treatment will not be effective and should be avoided. I am 11q deleted and had one treatment of BR some 23 months ago (March 2019) with a severe reaction. I have not had
Joffre1
in
CLL Support
3 years ago
Clinical trial with Acalabrutinib and Obinutuzumab
I have the opportunity to be part of a clinical trial. The purpose of the study is to understand if early intervention (people on W&W in the high or very high risk group of needing treatment in the next 2 years but current protocol would not yet be treated) of CLL/SLL using targeted therapy will lead
I have the opportunity to be part of a clinical trial. The purpose of the study is to understand if early intervention (people on W&W in the high or very high risk group of needing treatment in the next 2 years but current protocol would not yet be treated) of CLL/SLL using targeted therapy will lead
Reflectionofsky
in
CLL Support
3 years ago
CAR-T THERAPY FAIL
Hi folks, We've just had the sad news today that my husband's CAR-T therapy treatment has failed. He has Mantel Cell Lymphomia. To say we are very sad about this is an understatement. We both had high hopes for this treatment and saw it as the last opportunity to be clear of the cancer. He went
Hi folks, We've just had the sad news today that my husband's CAR-T therapy treatment has failed. He has Mantel Cell Lymphomia. To say we are very sad about this is an understatement. We both had high hopes for this treatment and saw it as the last opportunity to be clear of the cancer. He went
pollyg2016
in
Non Hodgkin's Lymphoma Friends
3 years ago
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
3 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
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
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