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MPN Voice Patients’ Forum – Birmingham. Friday 6th October 2017, 12.30 – 4 pm, registration and buffet lunch 12 – 12.30 pm
Suite 7, Fazeley Studios, 191 Fazeley Street, Digbeth, Birmingham, B5 5SE
Programme
The programme is yet to be finalized, but will include talks from haematologists, a haematology specialist nurse, and patients, plus breakout groups for each MPN where patients can meet in smaller groups
Suite 7, Fazeley Studios, 191 Fazeley Street, Digbeth, Birmingham, B5 5SE
Programme
The programme is yet to be finalized, but will include talks from haematologists, a haematology specialist nurse, and patients, plus breakout groups for each MPN where patients can meet in smaller groups
Mazcd
MPNVoice
in
MPN Voice
7 years ago
MPN Voice Patients’ Forum – Inverness. Friday 8th September, 10 am - 2 pm, registration 9.30 – 10 am
Eden Court Theatre, Bishops Road, Inverness, IV3 5SA
The forum will be held in The MacLean Room
Programme
The programme is yet to be finalized, but will include talks from haematologists, the haematology nurse specialist from Guy’s Hospital and patients, plus breakout groups for each
Eden Court Theatre, Bishops Road, Inverness, IV3 5SA
The forum will be held in The MacLean Room
Programme
The programme is yet to be finalized, but will include talks from haematologists, the haematology nurse specialist from Guy’s Hospital and patients, plus breakout groups for each
Mazcd
MPNVoice
in
MPN Voice
7 years ago
Stem Cell Transplant Research
Trying to find a way to eliminate the need for bone marrow donors ... http://tinyurl.com/y8rm9p6u
Trying to find a way to eliminate the need for bone marrow donors ... http://tinyurl.com/y8rm9p6u
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
7 years ago
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Angina symptoms
Hi I had replaced mechanical valve and CABG oct15 , I found recently if I vomit I have pressure in my sternum and ache like Chinese burn in my left arm . It happened after I had a personal trainer who worked my cardio hard and I was sick after 40 minutes ( she did knis my history ) Is this normal ?
Hi I had replaced mechanical valve and CABG oct15 , I found recently if I vomit I have pressure in my sternum and ache like Chinese burn in my left arm . It happened after I had a personal trainer who worked my cardio hard and I was sick after 40 minutes ( she did knis my history ) Is this normal ?
Kimstyles
in
British Heart Foundation
7 years ago
Question on Complete Stem Cell Transplant
Has anyone out there ever had a complete stem cell transplant? I will be going with my sister in law this coming week to Emory Hospital in Atlanta to find out the details. Would like to hear the good and the bad if you or if you know anyone who has had this done. She has CLL but has the P17 deletion
Has anyone out there ever had a complete stem cell transplant? I will be going with my sister in law this coming week to Emory Hospital in Atlanta to find out the details. Would like to hear the good and the bad if you or if you know anyone who has had this done. She has CLL but has the P17 deletion
evetom
in
CLL Support
7 years ago
From cabg post op confusion to stroke
Hi,I posted over 3 weeks ago about my concerns with my dad's post op confusion after a double bypass and valve replacement. He is still in hospital, had infections and rewiring of sternum He has now had a small stroke. He walked into hospital with all his faculties a month ago and now can't swallow,
Hi,I posted over 3 weeks ago about my concerns with my dad's post op confusion after a double bypass and valve replacement. He is still in hospital, had infections and rewiring of sternum He has now had a small stroke. He walked into hospital with all his faculties a month ago and now can't swallow,
Twerty
in
British Heart Foundation
7 years ago
How do I go on
My niece caught a terrible germ 2 years ago this July . Necrotising Fasciitis is a horrid thing . Lee should never servived but she did , she fought and jumped hurdles . In ICU for 53 days , in a comma fir half of that . Skin grafts 30 plus operations and she lost her leg but Lee continued to fight
My niece caught a terrible germ 2 years ago this July . Necrotising Fasciitis is a horrid thing . Lee should never servived but she did , she fought and jumped hurdles . In ICU for 53 days , in a comma fir half of that . Skin grafts 30 plus operations and she lost her leg but Lee continued to fight
Jodz
in
Anxiety Support
7 years ago
Aortic valve and CABG
Hi I had emergency aortic valve replaced oct 15 and a single CABG , I k ew I had artic sternisus and planning surgery but I detonated quickly ( quite scary how quick it happened ) I was 57 at the time , had surgery but my family had two in the morning callti say I was bleeding too much and needed to
Hi I had emergency aortic valve replaced oct 15 and a single CABG , I k ew I had artic sternisus and planning surgery but I detonated quickly ( quite scary how quick it happened ) I was 57 at the time , had surgery but my family had two in the morning callti say I was bleeding too much and needed to
Kimstyles
in
British Heart Foundation
7 years ago
Bone marrow transplant on the cards
Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line warts and all. 6-9 months for the Ibutrinin to do it's job then in for BMT. Good news is that I will only be in 4 weeks and can more or less choose when it's best for me to start. Sisters tissue is done, mine is not ready but
Meeting with a BMT consultant yesterday. Nice chap. Laid it all on the line warts and all. 6-9 months for the Ibutrinin to do it's job then in for BMT. Good news is that I will only be in 4 weeks and can more or less choose when it's best for me to start. Sisters tissue is done, mine is not ready but
KAS8
in
CLL Support
7 years ago
Once again, sad relapse
Sad news 😢 I was in remission only a few months for systematic NHL in 2015 after 6 rounds of R-EPOCH, then I had a recurrence in my Central nervous system once the NHL had crossed the blood brain barrier. I then had 8 rounds of Methotrexate/Rituxin prior to a stem cell transplant in Nov 2016 (the chemo
Sad news 😢 I was in remission only a few months for systematic NHL in 2015 after 6 rounds of R-EPOCH, then I had a recurrence in my Central nervous system once the NHL had crossed the blood brain barrier. I then had 8 rounds of Methotrexate/Rituxin prior to a stem cell transplant in Nov 2016 (the chemo
Jennchap1
in
Non Hodgkin's Lymphoma Friends
7 years ago
Journey begins
Hello ladies , a few hours since my first appointment with consultant following ultrasound diagnosis of a complex cyst two weeks ago. Surgery in three weeks to remove ovaries and Fallopian tubes he asked me to consent to further surgery when He's already there but warned he may have to go back in
Hello ladies , a few hours since my first appointment with consultant following ultrasound diagnosis of a complex cyst two weeks ago. Surgery in three weeks to remove ovaries and Fallopian tubes he asked me to consent to further surgery when He's already there but warned he may have to go back in
Christie22
in
My Ovacome
7 years ago
First time here
Hi everyone. I really don't know how to start and I honestly feel kind of embarrassed just throwing my business out for the entire world to see but I'm not sure what else to do. I'll keep this short, try to at least. I've been through Hodgkins Lymphoma twice, as recently as last year and beat it again
Hi everyone. I really don't know how to start and I honestly feel kind of embarrassed just throwing my business out for the entire world to see but I'm not sure what else to do. I'll keep this short, try to at least. I've been through Hodgkins Lymphoma twice, as recently as last year and beat it again
AntonioAndEmilio
in
Anxiety and Depression Support
7 years ago
Mellingacocal meningitis and septecemia
Hi all I am 55 and had meningitis septecemia when I was three.yrs old.it was awful for my mum as she had to keep phoning doctor after ten minute walk to phone box only to be told time after time by the receptionist that I probably had a cold .eventually a doctor did come out and soon as he looked at
Hi all I am 55 and had meningitis septecemia when I was three.yrs old.it was awful for my mum as she had to keep phoning doctor after ten minute walk to phone box only to be told time after time by the receptionist that I probably had a cold .eventually a doctor did come out and soon as he looked at
beaverlilly
in
Meningitis Now
7 years ago
Transplant Patients - SCT/BMT
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Have you had or are a candidate for a Stem Cell Transplant or someone who is a caregiver of a SCT patient? If so, there is a fantastic Facebook support group for SCT and BMT patients and their caregivers. If you would like the link, please message me and I would be happy to provide it to you. NOTE:
Tinkerbellcgy
in
Non Hodgkin's Lymphoma Friends
7 years ago
Multiple myeloma
Yo everyone I have mutiple myeloma colapse playing tennis back in may 2016 though I rip tenons and hip joint which they thought had come away from hip joint back wards forwards to doctor s for the pain in my left leg and thigh and hip joint could sleep pain was horrible got diagnosis in Feb 2017 with
Yo everyone I have mutiple myeloma colapse playing tennis back in may 2016 though I rip tenons and hip joint which they thought had come away from hip joint back wards forwards to doctor s for the pain in my left leg and thigh and hip joint could sleep pain was horrible got diagnosis in Feb 2017 with
Yobigfoot247
in
Myeloma UK
7 years ago
Searching for a TKO
I am seeking out others who may have a shared experience as am in a frustrating and nerve wracking place. I was diagnosed in Aug 2016 with DLBC Lymphoma, stage OK ...dr felt so confident that 6 rounds "gold standard treatment with RCHOP" would CURE this. 3 cycles and scan, good progress (original
I am seeking out others who may have a shared experience as am in a frustrating and nerve wracking place. I was diagnosed in Aug 2016 with DLBC Lymphoma, stage OK ...dr felt so confident that 6 rounds "gold standard treatment with RCHOP" would CURE this. 3 cycles and scan, good progress (original
buttrflymeme
in
Non Hodgkin's Lymphoma Friends
7 years ago
I just wish I could crawl out of this body and into a new one!!!
Before I start whining about my current aches, pains, and problems, I think I should first give a little background on my medical history. I feel like I have truly destroyed my body throughout the course of my life. I feel like I have broken almost as many bones as Evil Knievel! 1: Broken left
Before I start whining about my current aches, pains, and problems, I think I should first give a little background on my medical history. I feel like I have truly destroyed my body throughout the course of my life. I feel like I have broken almost as many bones as Evil Knievel! 1: Broken left
AllPainNoGain
in
Fibromyalgia Action UK
7 years ago
Atypical CML / MPN
Hi, I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept. to 96 and a few 80's in April-May
Hi, I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept. to 96 and a few 80's in April-May
Acml
in
Leukaemia Support
7 years ago
Atypical CML / MPN
Hi, (Age 69 yrs + 9 mos now) I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept.
Hi, (Age 69 yrs + 9 mos now) I was diagnosed with Atypical Chronic Myeloid Leukemia (aCML) in September 2016 (WBC 37,000 on 8/23/16) - classed as an MPN. ("Looks" like CML, but no Philadelphia chromosome.) High neutrophils, thrombocytopenia (platelets have drifted down from roughly 130-140 in Sept.
Acml
in
Fight MPN
7 years ago
Leeds Forum
Hi everyone I would like to that Maz and her team for organising the Patients forum in Leeds yesterday. It was a great day full of information from Maz and the specialist Drs and nurses. Chris did a fantastic speech about his journey through MF and a Bone marrow transplant. I was diagnosed with MF last
Hi everyone I would like to that Maz and her team for organising the Patients forum in Leeds yesterday. It was a great day full of information from Maz and the specialist Drs and nurses. Chris did a fantastic speech about his journey through MF and a Bone marrow transplant. I was diagnosed with MF last
Skye333
in
MPN Voice
7 years ago
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