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Saga continued.......
Well, Neuro didn't have great news but has decided to get me to have an ambulatory EMG over 3 days. I will stop anti seizure meds 1 week before and *maybe* pick up an anomaly during the 3 days I'm wired up. Still off driving for 6 months and has strongly advised against my planned trip to KL in 4
Well, Neuro didn't have great news but has decided to get me to have an ambulatory EMG over 3 days. I will stop anti seizure meds 1 week before and *maybe* pick up an anomaly during the 3 days I'm wired up. Still off driving for 6 months and has strongly advised against my planned trip to KL in 4
Ozchick
in
Hughes Syndrome APS Forum
5 years ago
Colonoscopy Whilst on Steroids
Hello Again! I am wondering if you could let me have your opinions before I speak to the endoscopy unit. I am having a colonoscopy later this month. I know how to live! 😊 My question is, on the day prior to the procedure, I am allowed a light breakfast - which is when I would normally take my 3mg
Hello Again! I am wondering if you could let me have your opinions before I speak to the endoscopy unit. I am having a colonoscopy later this month. I know how to live! 😊 My question is, on the day prior to the procedure, I am allowed a light breakfast - which is when I would normally take my 3mg
Songbird69
in
PMRGCAuk
5 years ago
Tiredness and essential thrombocythemia
Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is 77 but otherwise fit and well and has always been active and walking dogs etc. The tiredness gets her down and depressed. Her consultants just
Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is 77 but otherwise fit and well and has always been active and walking dogs etc. The tiredness gets her down and depressed. Her consultants just
Monkobutlers
in
MPN Voice
5 years ago
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Scottish Medicines Consortium approves Venetoclax + Rituximab Treatment for relapsed/refractory CLL
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Jm954
Administrator
in
CLL Support
5 years ago
My CLL and CAR-T story
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Greetings from Chaya Venkat <chaya@clltopics.net>
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
lankisterguy
Volunteer
in
CLL Support
5 years ago
My search for the perfect anti lymphoma diet
About one year ago I discovered this wonderful site. I had been diagnosed with Mantle cell lymphoma in July 2015 and had R Chop and a stem cell transplant. One year ago I had just started a gluten free and dairy free diet and I felt great. I suggested that anyone who had lymphoma and an autoimmune
About one year ago I discovered this wonderful site. I had been diagnosed with Mantle cell lymphoma in July 2015 and had R Chop and a stem cell transplant. One year ago I had just started a gluten free and dairy free diet and I felt great. I suggested that anyone who had lymphoma and an autoimmune
Maltipoo
in
Non Hodgkin's Lymphoma Friends
5 years ago
CLL Society New York City Support Group Meeting Sunday August 18, 2019 3:00pm
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
lankisterguy
Volunteer
in
CLL Support
5 years ago
A phase 2 study of ruxolitinib in combination with azacitidine in patients with myelofibrosis
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Paul123456
in
MPN Voice
5 years ago
Combining Pegasys and ruxolitinib (Jakafi) for MF: has anyone tried it?
Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me. I’ve already had one SCC excised from my face, as I’d posted, and a
Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me. I’ve already had one SCC excised from my face, as I’d posted, and a
Rachelthepotter
in
MPN Voice
5 years ago
Results cml myeloproliferative
Hi anyone give any advice Had results of jak2 test as unequivocal, doctor seemed this was good news , still further testing raised iron and platelets Another jak2 test scheduled in six months time . Just not sure how to interpret the findings Many thanks
Hi anyone give any advice Had results of jak2 test as unequivocal, doctor seemed this was good news , still further testing raised iron and platelets Another jak2 test scheduled in six months time . Just not sure how to interpret the findings Many thanks
JDHD1
in
Leukaemia Support
5 years ago
Extreme fatigue
Hi I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with myelofibrosis in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
Hi I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with myelofibrosis in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
Goldfish212
in
MPN Voice
5 years ago
CLL with with WBC over 100,000
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
Saber21
in
CLL Support
5 years ago
Nulasta and a large Spleen
My husband came home from the Hospital last night. He had two treatments of Gayzena (sp) Now he is has another due on Friday. They are ant him to come in today and he Nulasta . I’m worried about the whole thing he is exhausted, large spleen, low blood pressure and low Neuriphills. I read that a side
My husband came home from the Hospital last night. He had two treatments of Gayzena (sp) Now he is has another due on Friday. They are ant him to come in today and he Nulasta . I’m worried about the whole thing he is exhausted, large spleen, low blood pressure and low Neuriphills. I read that a side
AuntHelen
in
CLL Support
5 years ago
Reducing tocilizumab injections
I was told to try to take my tocilizumab injections every 4 weeks but struggled so much I have taken this last one after 3 weeks, before that 3 1/2 weeks twice. Does anyone have any experience of reducing the injections. I am feeling increasingly ill, sweating, extreme tiredness - signs the GCA is back
I was told to try to take my tocilizumab injections every 4 weeks but struggled so much I have taken this last one after 3 weeks, before that 3 1/2 weeks twice. Does anyone have any experience of reducing the injections. I am feeling increasingly ill, sweating, extreme tiredness - signs the GCA is back
christine2715
in
PMRGCAuk
5 years ago
LGL Leukaemia
Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.
Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.
GrannyTWest
in
CLL Support
5 years ago
Stem cell webinar by MJF and 1 unanswered question
Just finished listening to the MJF stem cell seminar. It was not particularly educational neither it gave any reason for optimism. Well, judge for yourself: slides are available on MJF site. I asked the panel a question but didn't get an answer. The question was: " It was reported that people who
Just finished listening to the MJF stem cell seminar. It was not particularly educational neither it gave any reason for optimism. Well, judge for yourself: slides are available on MJF site. I asked the panel a question but didn't get an answer. The question was: " It was reported that people who
felixned
in
Cure Parkinson's
5 years ago
Infrared sauna
Hi Everyone , I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to those of us with CLL. Thanks
Hi Everyone , I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to those of us with CLL. Thanks
nitram120
in
CLL Support
5 years ago
Myelofibrosis
Just wondering if anyone has a diagnosis of advanced or progressive post ET myelofibrosis. My partner was diagnosed a few months ago (ET diagnosed in 2016) with myelofibrosis. Since then he has been hospitalised with pneumonia and required potassium and a four units of blood. He was then discharged
Just wondering if anyone has a diagnosis of advanced or progressive post ET myelofibrosis. My partner was diagnosed a few months ago (ET diagnosed in 2016) with myelofibrosis. Since then he has been hospitalised with pneumonia and required potassium and a four units of blood. He was then discharged
Goldfish212
in
MPN Voice
5 years ago
Ibrutinib Plus Venetoclax in Relapsed/Refractory Chronic Lymphocytic Leukemia: Update on The CLARITY Study
Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We have some members who are in this important CLARITY Study in UK. CLARITY is a phase II trial that combined ibrutinib with venetoclax in patients with relapsed or refractory CLL. The primary end point was eradication of MRD after
Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We have some members who are in this important CLARITY Study in UK. CLARITY is a phase II trial that combined ibrutinib with venetoclax in patients with relapsed or refractory CLL. The primary end point was eradication of MRD after
Jm954
Administrator
in
CLL Support
5 years ago
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