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Mantle cell lymphoma (MCL)
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Three and a half years with Mantle cell lymphoma
I got diagnosed with
Mantle
Cell
Lymphoma
in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant.
I got diagnosed with
Mantle
Cell
Lymphoma
in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant.
GT97
in
CLL Support
3 years ago
Life expectancy with MF
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Cja1956
in
MPN Voice
2 years ago
Help make a drug to treat post-transplant CMV available to patients in Canada
If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cell Transplant, you can help Canadian patients gain access to this treatment by completing our survey! You do not need to live in Canada to complete this survey. CLL Canada is working with a coalition of blood cancer patient
If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cell Transplant, you can help Canadian patients gain access to this treatment by completing our survey! You do not need to live in Canada to complete this survey. CLL Canada is working with a coalition of blood cancer patient
CLL_Canada_Group
in
CLL Support
2 years ago
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Reduce cancerous cells
Low doses of thiamine hcl increase cancer threat ….. High dose is considered above 75mg per day. .https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3963161/?fbclid=IwAR3UMFj4c2z24JeAfiOoF79xej4LMJKUVZvSfheDAhHqkwB1lJNdo1LrpTU
Low doses of thiamine hcl increase cancer threat ….. High dose is considered above 75mg per day. .https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC3963161/?fbclid=IwAR3UMFj4c2z24JeAfiOoF79xej4LMJKUVZvSfheDAhHqkwB1lJNdo1LrpTU
Hidden
in
Non Hodgkin's Lymphoma Friends
3 years ago
Jaw spasm & neck muscle problems?
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
Hi, I am new to this forum which I am now following on behalf of my husband. He has scleroderma primarily upper body, as a result of Chronic Graft vs Host Disease post stem cell transplant. He has had and still has many issues with c GvHD. This year he has developed 2 more problems which are proving
AnnW22
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Sudden Lymph Node Enlargement
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph node that will require surgical removal for biopsy. The PET scan results are “worrisome for advanced lymphoma” and its hard not to mentally go
StrengthHopeLove
in
CLL Support
3 years ago
Rituxan
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
mkuhlman
in
CLL Support
3 years ago
Current Treatment Options in CLL Moritz Bewarder, Stephan Stilgenbauer, Lorenz Thurner, and Dominic Kaddu-Mulindwa
Abstract Simple Summary Standard treatment for chronic lymphocytic leukemia (CLL) has experienced a dramatic change over the last years. Until recently, CLL was treated using chemotherapy in combination with anti-CD20 antibody-based immunotherapy. Depending on age and clinical condition, patients received
Abstract Simple Summary Standard treatment for chronic lymphocytic leukemia (CLL) has experienced a dramatic change over the last years. Until recently, CLL was treated using chemotherapy in combination with anti-CD20 antibody-based immunotherapy. Depending on age and clinical condition, patients received
Tupelomojo
in
CLL Support
3 years ago
APS and Lymphoma. Newly diagnosed, need advice
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma. I am looking for guidance and advice from anyone who has this type of cancer. Thank you ♡♡♡
Piscesdreamer
in
Hughes Syndrome APS Forum
3 years ago
Early Treatment for Covid-19 with SARS-CoV-2 Neutralizing Antibody Sotrovimab
Just published in the NEJM https://www.nejm.org/doi/full/10.1056/NEJMoa2107934?query=TOC&cid=NEJM%20eToc,%20October%2028,%202021%20DM415467_NEJM_Non_Subscriber&bid=685430303 Interim results from the COMET-ICE phase 3, placebo-controlled clinical trial of Sotrovimab for nonhospitalized patients with
Just published in the NEJM https://www.nejm.org/doi/full/10.1056/NEJMoa2107934?query=TOC&cid=NEJM%20eToc,%20October%2028,%202021%20DM415467_NEJM_Non_Subscriber&bid=685430303 Interim results from the COMET-ICE phase 3, placebo-controlled clinical trial of Sotrovimab for nonhospitalized patients with
bennevisplace
in
CLL Support
3 years ago
Starting tocilizumab
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
I had my first shot of TCZ this morning (10 hours ago). 45 minutes later I started to feel lousy, dizzy etc. I'm slowly getting better now. Is this anyone else's experience?Is it likely to pass, and it is something I have to look forward to every week, or does your body adjust to it? Am also on 14mg
Sharitone
in
PMRGCAuk
3 years ago
Join the Virus Watch project ( in the UK)
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Anyone in the UK can join the “Virus Watch” research project (coordinated by University College London). Here is the link/ web address http://ucl-virus-watch.net/ My husband and I signed up a month ago - they send weekly emails asking you to fill in details of any possible Covid19 symptoms ( it
Suzita76
in
PMRGCAuk
3 years ago
Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
3 years ago
Summary Paper from Drs, Claire N. Harrison and Donal P. McLornan
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
Nice summary I just came across from some of the experts. I've included some outtakes I found notable. Lots more in there on R&D for MF. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjh.16573 From chart, HCT control matters. This was discovered ~2011 and is likely a big part of what we've discussed
EPguy
in
MPN Voice
3 years ago
Bendamustine & Rituximab remission?
How long did it lasted for you? I’m 7 months out & gastric symptoms are coming back.
How long did it lasted for you? I’m 7 months out & gastric symptoms are coming back.
LlHoot
in
Non Hodgkin's Lymphoma Friends
3 years ago
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
The Leukemia & Lymphoma Society’s National Patient Registry COVID-19 vaccination antibody results - published today (Greenberg et al)
62
Mantle
cell
lymphoma
44 -
Percent of patients seronegative
Mantle
cell
lymphoma
56 Marginal zone lymphoma 38 Chronic lymphocytic leukemia 36 Waldenstrom’s macroglobulinemia 26 Follicular lymphoma 22 Non-Hodgkin lymphoma, not specified 21 Diffuse large B cell lymphoma 21 T cell lymphoma
62
Mantle
cell
lymphoma
44 -
Percent of patients seronegative
Mantle
cell
lymphoma
56 Marginal zone lymphoma 38 Chronic lymphocytic leukemia 36 Waldenstrom’s macroglobulinemia 26 Follicular lymphoma 22 Non-Hodgkin lymphoma, not specified 21 Diffuse large B cell lymphoma 21 T cell lymphoma
lankisterguy
Volunteer
in
CLL Support
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
Steroid sparers
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
marantha
in
PMRGCAuk
3 years ago
Blood test changes.
67 years old, 3.5 years on Imbruvica. In remission. Last week's blood test had warning flags all over for first time in two years. About half of them flagged. Had major prostate surgery last month at MD ANDESON. Ones I really noticed were NO MONOCYTES, HIGH ATYPICAL LYMPHS, HIGH BASOS, DOUBLING
67 years old, 3.5 years on Imbruvica. In remission. Last week's blood test had warning flags all over for first time in two years. About half of them flagged. Had major prostate surgery last month at MD ANDESON. Ones I really noticed were NO MONOCYTES, HIGH ATYPICAL LYMPHS, HIGH BASOS, DOUBLING
lsutigers2018
in
CLL Support
3 years ago
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