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Experiences with
Small lymphocytic lymphoma (SLL)
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Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community
Australians diagnosed with chronic
lymphocytic
leukaemia/
small
lymphocytic
lymphoma
(CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future?
Australians diagnosed with chronic
lymphocytic
leukaemia/
small
lymphocytic
lymphoma
(CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future?
AussieNeil
Administrator
in
CLL Support
4 years ago
When to expect a reoccurance of large B cell lymphoma and what is the treatment?
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
Dlindquist54
in
Non Hodgkin's Lymphoma Friends
4 years ago
Rituxan
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Vintagemama
in
CLL Support
4 years ago
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New question regarding criteria
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
JennaShi
in
LUPUS UK
4 years ago
Hi I’m new here.
Treatment with Bendamustine and rituximab for follicular lymphoma stage 4. Very fatigued! Anyone else?
Treatment with Bendamustine and rituximab for follicular lymphoma stage 4. Very fatigued! Anyone else?
Sinsusie
in
Lymphoma Canada
4 years ago
Free Prescription home deliveries appear to have been stopped by Boots
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Harvist
in
CLL Support
4 years ago
Onion and garlic. Starting to feel sane!
I started to read a thread on this forum about food intolerance and have since looked at the Johns Hopkins site which mentions garlic as being a potential food to avoid. About 4-5 years ago I found that even the smallest amount of garlic or onion would make me feel sick within minutes and then my whole
I started to read a thread on this forum about food intolerance and have since looked at the Johns Hopkins site which mentions garlic as being a potential food to avoid. About 4-5 years ago I found that even the smallest amount of garlic or onion would make me feel sick within minutes and then my whole
RosieA
in
LUPUS UK
4 years ago
CLL/SLL Roundtable: Updates on Patient Management (including low dose radiation treatment for early stage SLL)
The conversation includes discussion on radiation therapy for early-stage
small
lymphocytic
lymphoma
(SLL), testing for early-stage CLL, current management strategies, and future directions.
The conversation includes discussion on radiation therapy for early-stage
small
lymphocytic
lymphoma
(SLL), testing for early-stage CLL, current management strategies, and future directions.
AussieNeil
Administrator
in
CLL Support
4 years ago
Chemo effects
Hi, 49 year old, been on watch and wait for 2 and a half years, but now have a very large node in groin. Anyway, I have to get some treatment, namely chemo and some sort of immunotherapy. I have read common effects of chemo (and I know everybody is different), but what has everybody here encountered
Hi, 49 year old, been on watch and wait for 2 and a half years, but now have a very large node in groin. Anyway, I have to get some treatment, namely chemo and some sort of immunotherapy. I have read common effects of chemo (and I know everybody is different), but what has everybody here encountered
Russ70
in
Non Hodgkin's Lymphoma Friends
4 years ago
HIGH MCV
Hi All, Hope all is staying safe and well. I had my Blood work the other day and noticed my MCV was high 101. Has anyone else had a high MCV and what does it mean. Sent an e-mail to my Specialist and just waiting for a response. Below are my other labs and all feedback is welcome. Thank you all
Hi All, Hope all is staying safe and well. I had my Blood work the other day and noticed my MCV was high 101. Has anyone else had a high MCV and what does it mean. Sent an e-mail to my Specialist and just waiting for a response. Below are my other labs and all feedback is welcome. Thank you all
Carrievc
in
CLL Support
4 years ago
Venetoclax started
Further to my recent post. I am pleased to say I am now home after my three days at RMH The team expected me to have TLS due to the size of my lymph nodes. They pumped me full of fluids and I had an infusion of rasburicase a few hours before Venetoclax. Thankfully my bloods showed no sign of TLS and
Further to my recent post. I am pleased to say I am now home after my three days at RMH The team expected me to have TLS due to the size of my lymph nodes. They pumped me full of fluids and I had an infusion of rasburicase a few hours before Venetoclax. Thankfully my bloods showed no sign of TLS and
aloneifly
in
CLL Support
4 years ago
Bendamustine with rituximab
my husband was diagnosed with CLL and will be starting on the above agents over the next 6 months. Anyone has experienced the same treatment before?
my husband was diagnosed with CLL and will be starting on the above agents over the next 6 months. Anyone has experienced the same treatment before?
gohmei
in
CLL Support
4 years ago
Vestibular problems
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Jmiller623
in
LUPUS UK
4 years ago
Mycosis Fungoides
Hi. I haven’t posted in a while but wanted anyone’s opinion on being tested for mycosis Fungoides and if anyone had CLL plus this disease. It’s a cutaneous T cell lymphoma. I’ve had a rash that was there two years ago and and it goes away and comes back in different areas. No scaling, itchiness
Hi. I haven’t posted in a while but wanted anyone’s opinion on being tested for mycosis Fungoides and if anyone had CLL plus this disease. It’s a cutaneous T cell lymphoma. I’ve had a rash that was there two years ago and and it goes away and comes back in different areas. No scaling, itchiness
Madison1995
in
CLL Support
4 years ago
ASCEND: Acalabrutinib Versus Idelalisib Plus Rituximab or Bendamustine Plus Rituximab in R/R CLL
Take home message is that Acalabrutinib significantly improved PFS and that Idelalisib Plus Rituximab treatment was associated with a high level of serious adverse events compared to the other treatments.
310 patients were randomly assigned to acalabrutinib monotherapy (n = 155) or investigator
Take home message is that Acalabrutinib significantly improved PFS and that Idelalisib Plus Rituximab treatment was associated with a high level of serious adverse events compared to the other treatments.
310 patients were randomly assigned to acalabrutinib monotherapy (n = 155) or investigator
Jm954
Administrator
in
CLL Support
4 years ago
Is Calquence helping you with Lymphoma?
I need patient reviews for Calquence. I have Mantle Cell Lymphoma, been through RChop (bought 4 years), could only tolerate 2 infusions of Bendamustine w/rituxin (bought 2 more years) and now DR wants me on Calquence. I suffered horrible migraines for 20 years when younger and am worried about headaches
I need patient reviews for Calquence. I have Mantle Cell Lymphoma, been through RChop (bought 4 years), could only tolerate 2 infusions of Bendamustine w/rituxin (bought 2 more years) and now DR wants me on Calquence. I suffered horrible migraines for 20 years when younger and am worried about headaches
Keptindark
in
CLL Support
4 years ago
Front-Runners Emerge in the Race for a Covid-19 Vaccine
Herd immunity via a vaccine that produces a good immune response is the best way forward for CLL and other immunocompromised patients all over the world. From WIRED Science Science 05.08.2020 Two leading candidates are headed for mass clinical trials, and everything’s on the table—including deliberately
Herd immunity via a vaccine that produces a good immune response is the best way forward for CLL and other immunocompromised patients all over the world. From WIRED Science Science 05.08.2020 Two leading candidates are headed for mass clinical trials, and everything’s on the table—including deliberately
Jm954
Administrator
in
CLL Support
4 years ago
Calquence Headaches and Low Blood Counts?
Hello!! I am writing on behalf of my dad. He was diagnosed with Mantle Cell Lymphoma in October 2019, he is 76 years old. He went through 5 months of chemotherapy (R-DHAP) and was deemed to be in remission from a PET scan. He was about to prep for stem cell transplant... however, they found some more
Hello!! I am writing on behalf of my dad. He was diagnosed with Mantle Cell Lymphoma in October 2019, he is 76 years old. He went through 5 months of chemotherapy (R-DHAP) and was deemed to be in remission from a PET scan. He was about to prep for stem cell transplant... however, they found some more
stonefilly
in
Non Hodgkin's Lymphoma Friends
4 years ago
Difficulty concentrating???
I had a hemorrhagic stroke in 2017 followed by my NHL diagnosis in 2018 & treatment with Rituximab. Ever since I've noticed a shift in my cognitive abilities especially with concentrating and comprehension. Anyone else had that experience? What did you do about it?
I had a hemorrhagic stroke in 2017 followed by my NHL diagnosis in 2018 & treatment with Rituximab. Ever since I've noticed a shift in my cognitive abilities especially with concentrating and comprehension. Anyone else had that experience? What did you do about it?
TigerM
in
Non Hodgkin's Lymphoma Friends
4 years ago
CAR-NK Cells Make Their Debut in Hematologic Cancers with Promising results
In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL) or non-Hodgkin lymphoma received the modified cells, known as chimeric antigen receptor-NK (CAR-NK) cells. Seven of the patients experienced complete remission, while in 1 other patient, treatment reduced the aggressiveness
In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL) or non-Hodgkin lymphoma received the modified cells, known as chimeric antigen receptor-NK (CAR-NK) cells. Seven of the patients experienced complete remission, while in 1 other patient, treatment reduced the aggressiveness
Jm954
Administrator
in
CLL Support
4 years ago
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