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Worried mum
Hi I am fairly new hear and haven’t posted before. But I have read many posts and been really greatful to be amongst people who get it. My daughter has been unwell and has low platelets. I have been told that CLL can be “slightly “ hereditary- and to be honest even the thought of my child going through
Hi I am fairly new hear and haven’t posted before. But I have read many posts and been really greatful to be amongst people who get it. My daughter has been unwell and has low platelets. I have been told that CLL can be “slightly “ hereditary- and to be honest even the thought of my child going through
Lexi1205
in
CLL Support
5 years ago
What is a non chemotherapy treatment regimen to treat CLl
I have just had my regular 6 week visit to my oncologist/haematologist .My readings have jumped after being stable since last November. ALC 84. Has been at 69 since last April. Dx 2016 Alc 21 has gradually increased . However my eGFR has dropped to 44 reference no is > 59. Creatinine is 139.above the
I have just had my regular 6 week visit to my oncologist/haematologist .My readings have jumped after being stable since last November. ALC 84. Has been at 69 since last April. Dx 2016 Alc 21 has gradually increased . However my eGFR has dropped to 44 reference no is > 59. Creatinine is 139.above the
Joffre1
in
CLL Support
5 years ago
SLE & Lupus Nephritis, now liver problems
Hi Everyone Just looking for advise or even a bit of reassurance.... So currently on steroids and imunosuppresants and 6 monthly doses of rituximab for SLE & Lupus Nephritis. Saw my Nephrologist last Monday who was concerned that my Liver function result has been 'off ' for the last 5 years and getting
Hi Everyone Just looking for advise or even a bit of reassurance.... So currently on steroids and imunosuppresants and 6 monthly doses of rituximab for SLE & Lupus Nephritis. Saw my Nephrologist last Monday who was concerned that my Liver function result has been 'off ' for the last 5 years and getting
MOOG144
in
LUPUS UK
5 years ago
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Decision Time
Hi all, I was diagnosed with thrombocytopenia in 2007 and over the years , my low platelets were managed with IVIG, prednisolone and Rituximab. However, now in my mid 60's the yo-yoing platelets is becoming more often and 3 different haematologists have urged me to go on a more "long term", treatment
Hi all, I was diagnosed with thrombocytopenia in 2007 and over the years , my low platelets were managed with IVIG, prednisolone and Rituximab. However, now in my mid 60's the yo-yoing platelets is becoming more often and 3 different haematologists have urged me to go on a more "long term", treatment
Rafiq
in
ITP Support Association
5 years ago
Rituximab wait 😫
I have been treated with 6 monthly rituximab infusions now for two years with good results , now became of a backlog in rheumatology im 2 months overdue. I am now having a return in symptoms , fatigue, muscle aches, joint pain ,lymph node swelling, increased dryness generally , difficulty sleeping and
I have been treated with 6 monthly rituximab infusions now for two years with good results , now became of a backlog in rheumatology im 2 months overdue. I am now having a return in symptoms , fatigue, muscle aches, joint pain ,lymph node swelling, increased dryness generally , difficulty sleeping and
weathervane
in
LUPUS UK
5 years ago
NICE approves venetoclax (VENCLYXTO) with rituximab for previously treated chronic lymphocytic leukaemia (CLL) patients
Great NEWS today, relapsing English and Welsh CLL patients have a new treatment approved by NICE. Ireland and Scotland NHS access will soon follow. NICE news article:
Thousands of adults with chronic lymphocytic leukaemia to benefit from new treatment option
[i]Thousands of people will benefit
Great NEWS today, relapsing English and Welsh CLL patients have a new treatment approved by NICE. Ireland and Scotland NHS access will soon follow. NICE news article:
Thousands of adults with chronic lymphocytic leukaemia to benefit from new treatment option
[i]Thousands of people will benefit
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
CLL chemo more than 10 days fever!
Hello! I have CLL and had my first FCR chemo except not Rituximab but Ofatumumab. Everything went well but since 10 days I have extreme high fever 39,9-40 degrees and itchy everywhere on my body and under my feet and hands. The meds for itchy help but i feel its not gone but the fever is still there
Hello! I have CLL and had my first FCR chemo except not Rituximab but Ofatumumab. Everything went well but since 10 days I have extreme high fever 39,9-40 degrees and itchy everywhere on my body and under my feet and hands. The meds for itchy help but i feel its not gone but the fever is still there
Eriksan2
in
CLL Support
5 years ago
Question - how many different varieties of antibodies can B-cells make? Hint - it's hypermutation (IGHV mutation) that makes it possible
Answer, 1 quintillion or 1,000,000,000,000,000,000 or 10^18 according to[i] a team led by Drs. Bryan Briney and Dennis R. Burton at Scripps Research examined antibody-producing B cells isolated from blood samples of 10 people between the ages of 18 and 30. ... Additional studies are needed to more accurately
Answer, 1 quintillion or 1,000,000,000,000,000,000 or 10^18 according to[i] a team led by Drs. Bryan Briney and Dennis R. Burton at Scripps Research examined antibody-producing B cells isolated from blood samples of 10 people between the ages of 18 and 30. ... Additional studies are needed to more accurately
AussieNeil
Partner
in
CLL Support
5 years ago
Rituximab
Hi everyone - I'm new on here. I was diagnosed with Limited Sys Sclerosis last year and have been taking Methotrexate and Hydroxychloroquine. Unfortunately this medication has not really helped. My consultant has now suggested an infusion of Rituximab. However, I was a bit put off when she mentioned
Hi everyone - I'm new on here. I was diagnosed with Limited Sys Sclerosis last year and have been taking Methotrexate and Hydroxychloroquine. Unfortunately this medication has not really helped. My consultant has now suggested an infusion of Rituximab. However, I was a bit put off when she mentioned
MGT56
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
RA fatigue
Hi everyone, has anybody experienced overwhelming fatigue following a Rituximab infusion? I have had five previous infusions with no side effects but totally wiped out this time, all suggestions appreciated. Thanks
Hi everyone, has anybody experienced overwhelming fatigue following a Rituximab infusion? I have had five previous infusions with no side effects but totally wiped out this time, all suggestions appreciated. Thanks
masonman
in
NRAS
6 years ago
splenic marginal zone lymphoma treatments
Hi, new to site. Does anyone know of the next line of treatment if rituximab and ibrutinib has not worked? Is there something that can be taken for an elderly person? And I have seen some posts about tongue ulcers and ibrutinib; is this a common problem and what is best to treat? Is there any research
Hi, new to site. Does anyone know of the next line of treatment if rituximab and ibrutinib has not worked? Is there something that can be taken for an elderly person? And I have seen some posts about tongue ulcers and ibrutinib; is this a common problem and what is best to treat? Is there any research
lukidude
in
Non Hodgkin's Lymphoma Friends
6 years ago
Chemo Finished
At long last my final cycle of FCR has been completed, and looking back on the last six months it has been a pretty eventful journey, but I will say to all of you that are about to begin FCR treatment and those already mid treatment I do believe it has been a journey worth taking. The low points passing
At long last my final cycle of FCR has been completed, and looking back on the last six months it has been a pretty eventful journey, but I will say to all of you that are about to begin FCR treatment and those already mid treatment I do believe it has been a journey worth taking. The low points passing
dandelup
in
CLL Support
5 years ago
ASH 2018: ECOG trial shows superiority of Ibrutinib and rituximab over FCR
Hi friends, The early buzz at ASH 2018 was rightly about the ECOG trial that was presented on the last day as a late breaking abstract. In my interview at the opening of the conference, Dr. Stilgenbauer discusses the practice changing significance of this study that proved that ibrutinib and rituximab
Hi friends, The early buzz at ASH 2018 was rightly about the ECOG trial that was presented on the last day as a late breaking abstract. In my interview at the opening of the conference, Dr. Stilgenbauer discusses the practice changing significance of this study that proved that ibrutinib and rituximab
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Prof Fegan talks from ASH 2018 | Telomere length can predict the outcome of FCR chemoimmunotherapy in CLL
We are in an era of fast evolving blood cancer treatment, novel non chemo therapies and new combinations offer the potential for individualised therapy choices based upon cryogenics and physiology. Individualised treatment plans for patients require reliable predictive prognostic tests to rule out
We are in an era of fast evolving blood cancer treatment, novel non chemo therapies and new combinations offer the potential for individualised therapy choices based upon cryogenics and physiology. Individualised treatment plans for patients require reliable predictive prognostic tests to rule out
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
Solve the problems
Hi am 51 last Feb. 8 of finger got gangrene ! It started with blue fingers which I have had problems in the past with Raynaud's , Lupus,Lupus anticoagulant , May-Thurner , vertigo ! I have Rheurnatologish and Hematologist ! I went to emergency rooms for pain and didn't know what was going on had
Hi am 51 last Feb. 8 of finger got gangrene ! It started with blue fingers which I have had problems in the past with Raynaud's , Lupus,Lupus anticoagulant , May-Thurner , vertigo ! I have Rheurnatologish and Hematologist ! I went to emergency rooms for pain and didn't know what was going on had
Blue5151
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
restless legs
I had my second day of chemo today after a bad night not being able to sleep because of restless legs. Consultant said it was the chemo - Bendamustine and Rituximab. Can I do anything about it?[i] I 'm going for a lie down xx[/i]
I had my second day of chemo today after a bad night not being able to sleep because of restless legs. Consultant said it was the chemo - Bendamustine and Rituximab. Can I do anything about it?[i] I 'm going for a lie down xx[/i]
snowdroprose
in
CLL Support
6 years ago
Treatments for C3G
There are no medicines that specifically treat C3G. Instead, current treatments aim to keep blood pressure, proteinuria (protein in the urine) and blood cholesterol levels low, and to control the immune system (the body’s defense against infections). The term C3G includes two conditions - dense deposit
There are no medicines that specifically treat C3G. Instead, current treatments aim to keep blood pressure, proteinuria (protein in the urine) and blood cholesterol levels low, and to control the immune system (the body’s defense against infections). The term C3G includes two conditions - dense deposit
DavidF_NKF
Administrator
in
C3 Glomerulopathy
6 years ago
Rituximab
My 14year old son has been struggling to get his platelets above 10,000 for 3 months with no success. Finally after complete 4werk course of Rituximab we are seeing gradual improvement. It is been four weeks since his last treatment Monday He received a count of 84,000. Unfortunately he is also experiencing
My 14year old son has been struggling to get his platelets above 10,000 for 3 months with no success. Finally after complete 4werk course of Rituximab we are seeing gradual improvement. It is been four weeks since his last treatment Monday He received a count of 84,000. Unfortunately he is also experiencing
Mythreeboys
in
ITP Support Association
6 years ago
Had second infusion of rituximab over the 2 weeks. Last let six months ago how long before it works?
Not on any other meds! Last one was 6th December and I was hoping to feel better.
Not on any other meds! Last one was 6th December and I was hoping to feel better.
28maggie11
in
NRAS
6 years ago
I'm on Rituximab and wondering if it is safe to be around people that have been given live jabs?
The reason I ask is that my little grand daughter has to get a live nasal flu injection tomorrow and I know if we are on Rituximab we are not allowed live jabs and I'm sure I read somewhere that if you are on it to stay away from anyone that's been given the live injection for two weeks but that may
The reason I ask is that my little grand daughter has to get a live nasal flu injection tomorrow and I know if we are on Rituximab we are not allowed live jabs and I'm sure I read somewhere that if you are on it to stay away from anyone that's been given the live injection for two weeks but that may
mille
in
NRAS
6 years ago
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