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Cutaneous T cell lymphoma (CTCL)
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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
The Salt Room ...
Hi Everyone, thought I would tell you about what has happened to me over the last couple of days. I have been travelling quite well on 6 mgs of pred and tocilizumab jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts
Hi Everyone, thought I would tell you about what has happened to me over the last couple of days. I have been travelling quite well on 6 mgs of pred and tocilizumab jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts
LemonZest11
in
PMRGCAuk
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
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Welcome
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
MFBMT2011
in
MPN Voice
4 years ago
Mother with CMML2
Hi everyone, My mother had a heart attack on her birthday in August 2018... then shortly after was diagnosed with CMML2. Anyone on here have CMML2? She is not a candidate for Stem Cell transplant due to heart function being damaged from the heart attack, they feel she would not survive the host-graft
Hi everyone, My mother had a heart attack on her birthday in August 2018... then shortly after was diagnosed with CMML2. Anyone on here have CMML2? She is not a candidate for Stem Cell transplant due to heart function being damaged from the heart attack, they feel she would not survive the host-graft
ckurtz
in
Leukaemia 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
MDS
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Doctors found out its MDS for my father, so they want to control it with medicines similar to cemo and then will decide after 4 months for bone marrow transplant. I am just wondering we had this problem of low hemoglobin since his radiation 2.5 years but still hemotologist never realised this is the
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Anemia related to bone marrow
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
It's bone marrow problem as per doctors and test result, its been since radiation 3 yrs back and testicals removal, my father kept saying about hemoglobin declining but doctors never suggested bone marrow tests since then, it was gradually rising, it could have been easily cured. Now doctor said we got
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Stem Cell Transplant
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
I heard this can cure PV. Why the he is this not legal in the USA?! Obviously I can't fly to Panama to get this done and can't afford it. I'm sick of being fatigued!
lebowski42
in
MPN Voice
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
An update on my tocilizumab experience.
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
LemonZest11
in
PMRGCAuk
4 years ago
Living with Chronic Neuropathic Pain
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
Hidden
in
Pain Concern
4 years ago
OVERCOMING GVHD AFTER ASCT
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
socrates_8
in
MPN Voice
4 years ago
Kate Gilbert’s book. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
Seraphina56
in
PMRGCAuk
4 years ago
Why can't I be happy?!
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
PBC and stem cells
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
K-nirk
in
PBCers Organization
4 years ago
European Headache Federation recommendations for neurologists managing giant cell arteritis - 17 Mch 2020
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
Sefu
in
PMRGCAuk
4 years ago
Less than satisfactory telephone consultation
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Devoid
in
PMRGCAuk
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
Face masks - recommendations?
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
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