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Blue badge
Morning lovely people . After a bit of advice about applying for a blue badge . I’ve had RA for 3 years , it’s been quite a journey , having tried the usual meds I’m now on Rituximab infusions every 6 months and leflunomide daily .I’ve had shingles and just to add to the list I broke my ankle in April
Morning lovely people . After a bit of advice about applying for a blue badge . I’ve had RA for 3 years , it’s been quite a journey , having tried the usual meds I’m now on Rituximab infusions every 6 months and leflunomide daily .I’ve had shingles and just to add to the list I broke my ankle in April
Fifi2
in
NRAS
6 years ago
Maintenance therapy??
Hi - I have completed 4 rounds of BR and the 5th one has been postponed due to low neutrophils. The neutrophils are still low, after 9 weeks, and the doctor is considering discontinuation of chemo, given that my results returned to normal after the 1st treatment. I asked for the second opinion and
Hi - I have completed 4 rounds of BR and the 5th one has been postponed due to low neutrophils. The neutrophils are still low, after 9 weeks, and the doctor is considering discontinuation of chemo, given that my results returned to normal after the 1st treatment. I asked for the second opinion and
Victoria666
in
CLL Support
6 years ago
FCR, WHAT IS THE AGE LIMIT FOR FCR OR IS IT MORE ABOUT FITNESS
I am 71 years of age and was diagnosed with MGUS 22 years ago, this progressed to CLL in July this year. I have had a FISH test and have been recommended for the FLAIR trail. FCR is one Arm of the trial so am I right to assume that my age is not an issue? I am pretty fit and do not have any co-morbidity
I am 71 years of age and was diagnosed with MGUS 22 years ago, this progressed to CLL in July this year. I have had a FISH test and have been recommended for the FLAIR trail. FCR is one Arm of the trial so am I right to assume that my age is not an issue? I am pretty fit and do not have any co-morbidity
BasTel
in
CLL Support
6 years ago
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Looking for advice please
Hello, I was diagnosed with SLE lupus overlap disease, raynauds and arthritis after the birth of my daughter nearly 5 years ago. I have tried and been on a combination of Methotrexate, mycophenolate, hydroxychloroquin (maximum dose), prednisolone, IV Epoprostenol infusion, amlopodene, sildenafil (maximum
Hello, I was diagnosed with SLE lupus overlap disease, raynauds and arthritis after the birth of my daughter nearly 5 years ago. I have tried and been on a combination of Methotrexate, mycophenolate, hydroxychloroquin (maximum dose), prednisolone, IV Epoprostenol infusion, amlopodene, sildenafil (maximum
Lisagill
in
LUPUS UK
6 years ago
Baricitinib and Low Dose Naltrexone
Hello Has anyone taken Baricitinib and if so, has it worked? After being hospitalised for an infection due to using Cimzia for 5 years, I have been given the choice of having Rituximab or Baricitinib, and thinking of favouring Baricitinib as it is not a biological drug. Also, I’ve been researching Low
Hello Has anyone taken Baricitinib and if so, has it worked? After being hospitalised for an infection due to using Cimzia for 5 years, I have been given the choice of having Rituximab or Baricitinib, and thinking of favouring Baricitinib as it is not a biological drug. Also, I’ve been researching Low
Ridgewaytwenty
in
NRAS
6 years ago
Sjögren Syndrome: 5 True/False Questions
Sjögren Syndrome: 5 True/False Questions Rheumatology Network Staff Apr 19, 2018 Sjögren's Syndrome TRUE: Rituximab may be considered for xerostomia in patients with primary Sjögren syndrome who have residual salivary production and significant oral damage, for whom conventional therapies have proved
Sjögren Syndrome: 5 True/False Questions Rheumatology Network Staff Apr 19, 2018 Sjögren's Syndrome TRUE: Rituximab may be considered for xerostomia in patients with primary Sjögren syndrome who have residual salivary production and significant oral damage, for whom conventional therapies have proved
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
6 years ago
Anyone declined rituximab with MPA and pulmonary hemorrhage
Hi all, I got diagnosed with MPA via lung biopsy after having two pulmonary hemorrhages within a few months of each other (lsst time in March this year). I had two preliminary doses of rituximab and high dose prednisolone and now 6 months on i am feeling better and lungs look clear. I am interested
Hi all, I got diagnosed with MPA via lung biopsy after having two pulmonary hemorrhages within a few months of each other (lsst time in March this year). I had two preliminary doses of rituximab and high dose prednisolone and now 6 months on i am feeling better and lungs look clear. I am interested
Becca81
in
Vasculitis UK
6 years ago
Pain medication/ help
Hi all, First post. I’ve had RA for 15 years now (I’m 36). Have so far tried cimzia, humira, Benepali, rituximab and tox infusions - some worked for a short while, some not at all. I have been on prednisolone since I was diagnosed at varying doses - sometimes as low as 1mg a day but currently on 10mg
Hi all, First post. I’ve had RA for 15 years now (I’m 36). Have so far tried cimzia, humira, Benepali, rituximab and tox infusions - some worked for a short while, some not at all. I have been on prednisolone since I was diagnosed at varying doses - sometimes as low as 1mg a day but currently on 10mg
Bizzita
in
NRAS
6 years ago
50 yr old son had 6 cycles of FCR in 2017. In complete remission over a year. Recent wbc and platelets way down. What is happening?
Back to onco-hemo dr in 2weeks. BWB biopsy will be needed if counts do not go up. Son feels fine. Any thoughts?
Back to onco-hemo dr in 2weeks. BWB biopsy will be needed if counts do not go up. Son feels fine. Any thoughts?
jumper23
in
CLL Support
6 years ago
Systemic therapy - FCR: Day One
Chemo was way too eventful today. For the first treatment the nurses give the iv chemo slowly over a period of hours so that they can monitor for any allergic reactions...well, I ended up having an allergic reaction to it so they stopped and gave me Benadryl and steroids to help calm my body down. It
Chemo was way too eventful today. For the first treatment the nurses give the iv chemo slowly over a period of hours so that they can monitor for any allergic reactions...well, I ended up having an allergic reaction to it so they stopped and gave me Benadryl and steroids to help calm my body down. It
Famburt
in
CLL Support
6 years ago
Rituximab.
That's the name of the drug the consultant has recommended to the transplant team one of the side effects shows it attacks my immune system and can cause infections if that's the case then I wont be getting this. Has anyone used this drug so I can get some feedback. Mattcass
That's the name of the drug the consultant has recommended to the transplant team one of the side effects shows it attacks my immune system and can cause infections if that's the case then I wont be getting this. Has anyone used this drug so I can get some feedback. Mattcass
mattcass
in
NRAS
6 years ago
28 Days on Ibrutinib
Yesterday was exactly 4 weeks since beginning Ibrutinib for my leukaemia. It’s a journey I should have started many months before I did. But previous NHS England guidelines of preventing those having been in remission following chemotherapy for more than 3 years from being treated with this drug saw
Yesterday was exactly 4 weeks since beginning Ibrutinib for my leukaemia. It’s a journey I should have started many months before I did. But previous NHS England guidelines of preventing those having been in remission following chemotherapy for more than 3 years from being treated with this drug saw
Mick491
in
CLL Support
6 years ago
Rituximab and Anxiety
Hi Sweetcandy. I have had two infusions of this Biologic drug and have not experienced any adverse side effects. In the past I have suffered with chronic anxiety and worked on a support helpline for people with this dreadful problem. We tend to get in to a "fear of fear" situation and find it difficult
Hi Sweetcandy. I have had two infusions of this Biologic drug and have not experienced any adverse side effects. In the past I have suffered with chronic anxiety and worked on a support helpline for people with this dreadful problem. We tend to get in to a "fear of fear" situation and find it difficult
masonman
in
NRAS
6 years ago
Rituximab and mood disorders?
Hi, I have been having a rough go. I got really bad anxiety and depression approximately 2 months after my rituximab infusions. I don't know if this is as a result of the infusions as I got an informational pamphlet about rituximab and it mentioned mood changes and to tell your rheumy. But my rheumy
Hi, I have been having a rough go. I got really bad anxiety and depression approximately 2 months after my rituximab infusions. I don't know if this is as a result of the infusions as I got an informational pamphlet about rituximab and it mentioned mood changes and to tell your rheumy. But my rheumy
sweetcandy
in
NRAS
6 years ago
Antiphospholipid Syndrome: The Risk of Travel at High Altitudes
Antiphospholipid Syndrome: The Risk of Travel at High Altitudes August 16, 2018 • By Vaneet Kaur Sandhu, MD, & Kathleen Teves, MD Antiphospholipid syndrome (APS) is an autoimmune clotting disorder that may present catastrophically with multiple thromboses over a short period of time. In this article
Antiphospholipid Syndrome: The Risk of Travel at High Altitudes August 16, 2018 • By Vaneet Kaur Sandhu, MD, & Kathleen Teves, MD Antiphospholipid syndrome (APS) is an autoimmune clotting disorder that may present catastrophically with multiple thromboses over a short period of time. In this article
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
6 years ago
Can a SLL patient become CLL?
Was wondering if an SLL can turn into CLL? would that mean it’s invasive? My WBC have always been within the normal range except when I did that FCR treatment they went down to 1. They are presently at 3.9 the highest they have ever been since March of 2014!
Was wondering if an SLL can turn into CLL? would that mean it’s invasive? My WBC have always been within the normal range except when I did that FCR treatment they went down to 1. They are presently at 3.9 the highest they have ever been since March of 2014!
Lola69
in
CLL Support
6 years ago
MRD Results.
MRD results are in after 3 rounds of FCR. I am wondering if any other members of this group achieved MRD after partial treatment and what your MRD numbers were. I achieved a 1% according to my Dr. any info would be greatly appreciated. Thanks in advance
MRD results are in after 3 rounds of FCR. I am wondering if any other members of this group achieved MRD after partial treatment and what your MRD numbers were. I achieved a 1% according to my Dr. any info would be greatly appreciated. Thanks in advance
BEN61
in
CLL America Support
6 years ago
CLL Treatment Sequencing by Dr. Susan O'Brien
O'Brien Shares Overview of CLL Sequencing OncLive: by Brandon Scalea Published: Friday, Aug 10, 2018 ( poster comment; mostly a USA perspective) https://www.onclive.com/web-exclusives/obrien-shares-overview-of-cll-sequencing?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%
O'Brien Shares Overview of CLL Sequencing OncLive: by Brandon Scalea Published: Friday, Aug 10, 2018 ( poster comment; mostly a USA perspective) https://www.onclive.com/web-exclusives/obrien-shares-overview-of-cll-sequencing?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%
lankisterguy
Volunteer
in
CLL Support
6 years ago
Feeling really lost and scared.
My husband did have CLL but had Richters Transformation to Lymphoma. He has been having Rituximab with Gemcitabine and Oxaliplatin. However yesterday his Consultant said his platelets are too low (50) to have the 6th and final planned dose. She does not plan to do a scan for a few weeks, has no other
My husband did have CLL but had Richters Transformation to Lymphoma. He has been having Rituximab with Gemcitabine and Oxaliplatin. However yesterday his Consultant said his platelets are too low (50) to have the 6th and final planned dose. She does not plan to do a scan for a few weeks, has no other
krisskross
in
CLL Support
6 years ago
Healing words please
Hello lovely people. Just after some pick me ups and friendly words really. I’m currently sat at home feeling very miserable when I should be at work, haven’t had to take a day off sick for a while. I’ve recently started Lefluonimide (or however it’s spelt!) been two months now and I haven’t had any
Hello lovely people. Just after some pick me ups and friendly words really. I’m currently sat at home feeling very miserable when I should be at work, haven’t had to take a day off sick for a while. I’ve recently started Lefluonimide (or however it’s spelt!) been two months now and I haven’t had any
EmLem89
in
NRAS
6 years ago
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