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Experiences with
Cyclophosphamide
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MRI Results
MRI (arranged through my local hospital where there is a 6mth waiting list for MRI s some how on his advice it was organised in 2 weeks) The last time I saw him he said I had a Demyelinating syndrome caused be an underlying vascular disorder I had demyelination from C2 to C6 and it was treated with
cyclophosphamide
MRI (arranged through my local hospital where there is a 6mth waiting list for MRI s some how on his advice it was organised in 2 weeks) The last time I saw him he said I had a Demyelinating syndrome caused be an underlying vascular disorder I had demyelination from C2 to C6 and it was treated with
cyclophosphamide
mully
in
Hughes Syndrome APS Forum
3 years ago
MULTIPLE CLL RELAPSES- NEE TREATMENT OPTIONS AND EXPERIENCES
Hi all.. Patient was diagnosed with CLL in 2017 as he was at stage 0 he was asked to wait and watch 2018- reached Rai stage 3.. FCR was given starting with immunotherapy 2019- relapse of CLL- started having Ibrutinib 2020 Nov- got covid ( episode 1) 2021- April - COVID ( episode2) June- relapse
Hi all.. Patient was diagnosed with CLL in 2017 as he was at stage 0 he was asked to wait and watch 2018- reached Rai stage 3.. FCR was given starting with immunotherapy 2019- relapse of CLL- started having Ibrutinib 2020 Nov- got covid ( episode 1) 2021- April - COVID ( episode2) June- relapse
theoptimistduo
in
CLL America Support
2 years ago
CLL RELAPSE.. LATEST TREATMENTS AVAILABLE
Hi all.. Patient was diagnosed with CLL in 2017 as he was at stage 0 2018- reached Rai stage 3.. FCR was given starting with immunotherapy 2019- relapse of CLL- started having Ibrutinib 2020 Nov- got covid ( episode 1) 2021- April - COVID ( episode2) June- relapse of CLL as Ibrutinib stopped
Hi all.. Patient was diagnosed with CLL in 2017 as he was at stage 0 2018- reached Rai stage 3.. FCR was given starting with immunotherapy 2019- relapse of CLL- started having Ibrutinib 2020 Nov- got covid ( episode 1) 2021- April - COVID ( episode2) June- relapse of CLL as Ibrutinib stopped
theoptimistduo
in
CLL Support
2 years ago
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CAR T-Cell Use Possible in Metastatic Castration-Resistant Prostate Cancer
So traditionally, with CAR T cells in leukemia and lymphoma, they give
cyclophosphamide
and fludarabine. We weren't sure whether that would be necessary when we were translating this to solid tumors because the solid tumor is not in the space where leukemia and lymphoma reside.
So traditionally, with CAR T cells in leukemia and lymphoma, they give
cyclophosphamide
and fludarabine. We weren't sure whether that would be necessary when we were translating this to solid tumors because the solid tumor is not in the space where leukemia and lymphoma reside.
Scout4answers
in
Advanced Prostate Cancer
3 years ago
Systemic sclerosis
I've been on bosenton, tadalafil, and injections of
cyclophosphamide
500 mg and mythhylprednisolone 500 mg every one month. My symptoms are not under control, despite using medications like these. I've tried everything to control the symptoms, but they aren't going away.
I've been on bosenton, tadalafil, and injections of
cyclophosphamide
500 mg and mythhylprednisolone 500 mg every one month. My symptoms are not under control, despite using medications like these. I've tried everything to control the symptoms, but they aren't going away.
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Evusheld and heart
I’m now eligible for Evusheld (in Australia), being recently finished Rituxamib. My wife & I have been very cautious and are Covid-free so far, but thinking with so many Covid cases circulating now, it’s probably prudent to have the Evusheld however, my careful daughter found a vague reference in FDA
I’m now eligible for Evusheld (in Australia), being recently finished Rituxamib. My wife & I have been very cautious and are Covid-free so far, but thinking with so many Covid cases circulating now, it’s probably prudent to have the Evusheld however, my careful daughter found a vague reference in FDA
Moggn
in
CLL Support
2 years ago
Cytoxan(Cyclophosphamide
Hello to All, My husband had an appointment with his neurologist today. The latest MRI indicates he still has Encephalitis. With the latest cocktail of meds, (prednisone, mycophenolate and Rituxan) his doctor thought the encephalitis would show improvement or be totally gone by now. His doctor
Hello to All, My husband had an appointment with his neurologist today. The latest MRI indicates he still has Encephalitis. With the latest cocktail of meds, (prednisone, mycophenolate and Rituxan) his doctor thought the encephalitis would show improvement or be totally gone by now. His doctor
NebraskaTexas
in
Encephalitis International
3 years ago
Microscopic polyangitis
Hi I’ve just received 3 infusions of
cyclophosphamide
at 3 week intervals for microscopic polyangitis for which I’ve had 2.5 years. Since my first infusion I’ve had a constant dull ache pain in both my liver and spleen, I’ve also had 2 months of severe nausea/ sickness.
Hi I’ve just received 3 infusions of
cyclophosphamide
at 3 week intervals for microscopic polyangitis for which I’ve had 2.5 years. Since my first infusion I’ve had a constant dull ache pain in both my liver and spleen, I’ve also had 2 months of severe nausea/ sickness.
Hidden
in
Vasculitis UK
3 years ago
IV infusions and CNS Lupus
The latest plan is to have a course of IV steroids and start IV
Cyclophosphamide
in the rheumatology day unit in Bath. I just wondered if there is anyone else out there with CNS lupus or anyone who has had biologic infusions that would be happy to share their experiences with me.
The latest plan is to have a course of IV steroids and start IV
Cyclophosphamide
in the rheumatology day unit in Bath. I just wondered if there is anyone else out there with CNS lupus or anyone who has had biologic infusions that would be happy to share their experiences with me.
Queenie70
in
LUPUS UK
3 years ago
BTK+Venetoclax trial in the UK?
Hello, I was wondering if anyone is aware of any upcoming BTK+Venetoclax trials in the UK. The only one listed is the AVO vs AV vs FCR which is basically not recruiting anymore (probably because of the FCR arm). There are loads of these trials around the world but none in the UK. I wonder why. It seems
Hello, I was wondering if anyone is aware of any upcoming BTK+Venetoclax trials in the UK. The only one listed is the AVO vs AV vs FCR which is basically not recruiting anymore (probably because of the FCR arm). There are loads of these trials around the world but none in the UK. I wonder why. It seems
hope-73
in
CLL Support
2 years ago
CAR-T Cell Therapy Trials
NCT04768608 Study 5: Title: A Study of CART-PSMA-TGFβRDN in Patients With Metastatic Castration Resistant Prostate Cancer Status: Active, not recruiting Study Results: No Results Available Conditions: Metastatic Castration-resistant Prostate Cancer Interventions: Biological: CART-PSMA-TGFβRDN|Drug:
Cyclophosphamide
NCT04768608 Study 5: Title: A Study of CART-PSMA-TGFβRDN in Patients With Metastatic Castration Resistant Prostate Cancer Status: Active, not recruiting Study Results: No Results Available Conditions: Metastatic Castration-resistant Prostate Cancer Interventions: Biological: CART-PSMA-TGFβRDN|Drug:
Cyclophosphamide
Hidden
in
Advanced Prostate Cancer
3 years ago
Date with FCR
Before anybody tells me there are better, newer options out there let me say that I am in Australia and FCR is my only option first line. I am 12 months watch and wait SLL with bulky nodes everywhere. Just had my second PET and specialist has said that it’s time to treat. Can anyone share with me their
Before anybody tells me there are better, newer options out there let me say that I am in Australia and FCR is my only option first line. I am 12 months watch and wait SLL with bulky nodes everywhere. Just had my second PET and specialist has said that it’s time to treat. Can anyone share with me their
Waves01
in
CLL Support
3 years ago
Venetoclax & fainting?
Hi everyone, I joined a few weeks ago and have found the reading enlightening , thank you. This is my first post , seeking some info about your experiences with V. I am just on 8 months thru the program, of ramp up Venetoclaxfor a month, then 6 mths of monthly Rituximab infusion and continuing V for
Hi everyone, I joined a few weeks ago and have found the reading enlightening , thank you. This is my first post , seeking some info about your experiences with V. I am just on 8 months thru the program, of ramp up Venetoclaxfor a month, then 6 mths of monthly Rituximab infusion and continuing V for
Moggn
in
CLL Support
3 years ago
Acalabrutinib or Ibrutinib.
Hi, Age is 46. Six cycles of FCR is done in Oct 2019. Latest absolute count of lymphocytes is 6108. But lymph nodes are increasing . Specially under arms the lymph node size is around 5 inch and near neck is 4 inch. Doctor suggested to take either Acalabrutinib or Ibrutinib. Which one is good and
Hi, Age is 46. Six cycles of FCR is done in Oct 2019. Latest absolute count of lymphocytes is 6108. But lymph nodes are increasing . Specially under arms the lymph node size is around 5 inch and near neck is 4 inch. Doctor suggested to take either Acalabrutinib or Ibrutinib. Which one is good and
pbaddi
in
CLL Support
3 years ago
acquired angioedema
Has anyone been diagnosed with AAE caused by their CLL.? I was diagnosed with CLL in 2008, but the cause of all the swelling attacks I was having was not figured out until 2013. I have been through two 6 month treatments with FCR, the first because the CLL had reached the treatment stage and the second
Has anyone been diagnosed with AAE caused by their CLL.? I was diagnosed with CLL in 2008, but the cause of all the swelling attacks I was having was not figured out until 2013. I have been through two 6 month treatments with FCR, the first because the CLL had reached the treatment stage and the second
hertler13
in
CLL Support
3 years ago
Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic Leukaemia
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
CLLerinOz
Administrator
in
CLL Support
3 years ago
Venetoclax+Rituximab OR Acalabrutinib - What is the best choice?
Hi All, At my last appointment with my consultant I was told that I was nearing the need for treatment for my relapsed CLL. Quick History Diagnosed 2009 W&W till 2017 then FCR for 6 months - achieved MRD Negative Came out of remission March 2021, but now TP53 Variation (I assume that
Hi All, At my last appointment with my consultant I was told that I was nearing the need for treatment for my relapsed CLL. Quick History Diagnosed 2009 W&W till 2017 then FCR for 6 months - achieved MRD Negative Came out of remission March 2021, but now TP53 Variation (I assume that
Rich316
in
CLL Support
3 years ago
Hello
I have just finished a 6 month course of
cyclophosphamide
and prednisolone but unfortunately it didn't make any difference . I have just started mycophenolate to give that a try . I have been told that a lung transplant could be needed as the condition progresses. I must keep myself fit now .
I have just finished a 6 month course of
cyclophosphamide
and prednisolone but unfortunately it didn't make any difference . I have just started mycophenolate to give that a try . I have been told that a lung transplant could be needed as the condition progresses. I must keep myself fit now .
Disneytime
in
Lung Conditions Community Forum
3 years ago
Any advice on shingles misery?
I’ve been diagnosed with oral shingles (and a big thank you to Bellabee for recognising the symptoms and making me go to the doctor). I’m 6 days into aciclover and tegretol. I’m also using alcohol free mouth wash several times a day, but the pain is miserable. Paracetamol barely touches it and I’m so
I’ve been diagnosed with oral shingles (and a big thank you to Bellabee for recognising the symptoms and making me go to the doctor). I’m 6 days into aciclover and tegretol. I’m also using alcohol free mouth wash several times a day, but the pain is miserable. Paracetamol barely touches it and I’m so
Mandy56
in
CLL Support
3 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
3 years ago
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