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Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Hi everyone, just found this site through the NHS app. Had cancer twice, had chemo plus stem cell transplant. I've been left with knee problems due to Lymphoma and have to use a stroller and wheelchair. The treatment I've had has led to a deep depression and anxiety as I no longer have my independence
Akita1963
in
Anxiety and Depression Support
3 years ago
Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
PMRpro
Ambassador
in
PMRGCAuk
3 years ago
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets?
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Yamaha1871
in
ITP Support Association
3 years ago
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Newly approved drug effective against lung cancer caused by genetic mutation
The new drug sotorasib reduces tumor size and shows promise in improving survival among patients with lung tumors caused by a specific DNA mutation, according to results of a global phase 2 clinical trial. The drug is designed to shut down the effects of the mutation, which is found in about 13% of patients
The new drug sotorasib reduces tumor size and shows promise in improving survival among patients with lung tumors caused by a specific DNA mutation, according to results of a global phase 2 clinical trial. The drug is designed to shut down the effects of the mutation, which is found in about 13% of patients
2greys
in
Lung Conditions Community Forum
3 years ago
More on HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
SARose
in
PMRGCAuk
3 years ago
Inflammatory Pathophysiology as a Contributor to MPN
« Clinical evidence that JAK2 inhibition by ruxolitinib in MF neither reliably reduces malignant clonal burden nor eliminates cytokine elevations, suggests targeting cytokine mediated signaling as a therapeutic strategy, which is being pursued in new clinical trials » « The clearly prominent role of
« Clinical evidence that JAK2 inhibition by ruxolitinib in MF neither reliably reduces malignant clonal burden nor eliminates cytokine elevations, suggests targeting cytokine mediated signaling as a therapeutic strategy, which is being pursued in new clinical trials » « The clearly prominent role of
Manouche
in
MPN Voice
3 years ago
How do I safely live my life with CLL if my antibody test results are one of three scenarios?
I am a stage zero CLL patient of 5 years awaiting the results of my antibody test ordered by my oncologist due to the recent news that CLL patients are often not getting as many antibodies produced as hoped resulting from their CoVid vaccines. I had 2 doses Moderna (Feb and March). I have been very
I am a stage zero CLL patient of 5 years awaiting the results of my antibody test ordered by my oncologist due to the recent news that CLL patients are often not getting as many antibodies produced as hoped resulting from their CoVid vaccines. I had 2 doses Moderna (Feb and March). I have been very
learning2021
in
CLL Support
3 years ago
Husband with CLL - struggling with no energy, motivation and depression. Help.
Hi all, New member seeking support here. My husband was diagnosed with CLL about 6 years ago when his WBC was at 24000. We chose naturopathic therapy (vit C infusions, colon hydrotherapy and hyperbaric oxygen treatments). After several months with no symptoms, he stopped treatments and continued his
Hi all, New member seeking support here. My husband was diagnosed with CLL about 6 years ago when his WBC was at 24000. We chose naturopathic therapy (vit C infusions, colon hydrotherapy and hyperbaric oxygen treatments). After several months with no symptoms, he stopped treatments and continued his
qtrhorsechic
in
CLL Support
3 years ago
Another HSCT question….
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
krikri1989ho
in
CLL Support
3 years ago
Introduction of myself, PMF, from China
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
merlisa
in
MPN Voice
3 years ago
Worried about mums blood test results.
My mum has had a high platelet count for around 8/9 years now. She was referred to a hematologist who thought she had essential thrombocythemia, her platelets were high, her red cells low and white within normal range! However she had a blood test done a week ago and her white cells were 100,000 , her
My mum has had a high platelet count for around 8/9 years now. She was referred to a hematologist who thought she had essential thrombocythemia, her platelets were high, her red cells low and white within normal range! However she had a blood test done a week ago and her white cells were 100,000 , her
Mummytonoah15
in
CLL Support
3 years ago
Richter Transformation Update 21-06-2021
Hello everyone. I would like to update the information of our Ricther Transformation group. A month and a half ago, a 42-year-old patient died. He had been transforming Ricther for nine months and was very aggressive. He had it spread all over his body. He was treated with R-Chop and in the middle
Hello everyone. I would like to update the information of our Ricther Transformation group. A month and a half ago, a 42-year-old patient died. He had been transforming Ricther for nine months and was very aggressive. He had it spread all over his body. He was treated with R-Chop and in the middle
Priss69
in
CLL Support
3 years ago
Blood test
Can anyone tell me please my latest bloods showed my MCV. 107 MCHC 310 My Haematologist wants to check them again but is waiting till my next appointment in 4 months. Feeling worried
Can anyone tell me please my latest bloods showed my MCV. 107 MCHC 310 My Haematologist wants to check them again but is waiting till my next appointment in 4 months. Feeling worried
SusieG60
in
MPN Voice
3 years ago
Awake worrying? Stop it. You deserve a free online 2nd Opinion from a CLL expert: CLL Society's Expert Access™ Program. Apply today:)
Awake worrying? If you are not seeing a CLL expert and worry is keeping you awake because you are less than confident in the treatment your current provider recommends, or you are facing a treatment decision and have received conflicting advice, CLL Society's Expert Access Program™ might be for you
Awake worrying? If you are not seeing a CLL expert and worry is keeping you awake because you are less than confident in the treatment your current provider recommends, or you are facing a treatment decision and have received conflicting advice, CLL Society's Expert Access Program™ might be for you
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Hairy cell leukaemia - treatment update
Quick update one week after my 5 day subcutaneous chemo jabs ended. So far so good, I've managed a few one mile or so walks with my daughter, am sleeping well, eating well but have lost nearly a stone (13 lb) weight over the last 6 weeks, and get tired if I over-exert myself. Also having a lot of night
Quick update one week after my 5 day subcutaneous chemo jabs ended. So far so good, I've managed a few one mile or so walks with my daughter, am sleeping well, eating well but have lost nearly a stone (13 lb) weight over the last 6 weeks, and get tired if I over-exert myself. Also having a lot of night
frankmok
in
Leukaemia Support
3 years ago
Long term tocilizumab use
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
christine2715
in
PMRGCAuk
3 years ago
High Jak2 burden with Tet2 mutation
I was diagnosed with P-vera a few months ago. My bone marrow biopsy showed I have the Jak2 v617f mution at 88% allele burden, this sounds very high to me. I also have a Tet2 mutation at 25% allele burden. Anyone else have high burden like this. My Doctor has down played the 88% burden, but my reading
I was diagnosed with P-vera a few months ago. My bone marrow biopsy showed I have the Jak2 v617f mution at 88% allele burden, this sounds very high to me. I also have a Tet2 mutation at 25% allele burden. Anyone else have high burden like this. My Doctor has down played the 88% burden, but my reading
Flynn2107
in
MPN Voice
3 years ago
Antibodies
I decided to do my second antibody test sooner rather than later as I’m meeting up with family over half term. Apparently a result greater than 0.8 U/mL means that antibodies are detected. My result came back at 24 U/mL! That is despite a dose of 20 mg Ruxolitinib twice daily and advanced post ET MF.
I decided to do my second antibody test sooner rather than later as I’m meeting up with family over half term. Apparently a result greater than 0.8 U/mL means that antibodies are detected. My result came back at 24 U/mL! That is despite a dose of 20 mg Ruxolitinib twice daily and advanced post ET MF.
beetle
in
MPN Voice
3 years ago
Proximal onycholysis
Just wondering if anyone taking hydroxyurea or ruxolitinib has had any nail problems. Two of my fingernails (thumb and ring finger) started with bruises under the cuticles and then white areas around the base of the nail which have actually started to peel off. I went to a dermatologist this morning
Just wondering if anyone taking hydroxyurea or ruxolitinib has had any nail problems. Two of my fingernails (thumb and ring finger) started with bruises under the cuticles and then white areas around the base of the nail which have actually started to peel off. I went to a dermatologist this morning
Buggerbear
in
MPN Voice
3 years ago
No Antibodies after Vaccine
Just got my results back for Covid Antibodies after Vaccination. It was Negative with a reported level of less than 0.4(U/mL). I took two doses of Pfizer, 8 weeks apart. I've been on Ibrutinib for CLL for 7 months now, and the first vaccine dose was 3 months after starting treatment. Really peed off
Just got my results back for Covid Antibodies after Vaccination. It was Negative with a reported level of less than 0.4(U/mL). I took two doses of Pfizer, 8 weeks apart. I've been on Ibrutinib for CLL for 7 months now, and the first vaccine dose was 3 months after starting treatment. Really peed off
MovingForward4423
in
CLL Support
3 years ago
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