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ASXL1 mutation 39% Worried about MF turning into leukemia
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
merlisa
in
Fight MPN
12 days ago
Blood thinner options...
Diagnosed earlier this year. Working my way through due to uncomfortable physical side effects.... (Done edoxaban, rivaroxaban) on 5mg 2 x daily now. Does it follow that Apixaban if twice daily , is a lower dose therefore, more gentle on your stomach and your system? Wondering if there is ever truly
Diagnosed earlier this year. Working my way through due to uncomfortable physical side effects.... (Done edoxaban, rivaroxaban) on 5mg 2 x daily now. Does it follow that Apixaban if twice daily , is a lower dose therefore, more gentle on your stomach and your system? Wondering if there is ever truly
sunlovah
in
Atrial Fibrillation Support
11 months ago
Prospect of TAVI or more invasive aortic valve replacement
This is a long list of my husbands ailments with only one question at the end.He has coronary artery stents ( 2005), Permanent AF since 2012, Peripheral arterial disease. Sleep apnoea uses CPAP machine. Strange absence event in Feb (cardiologist says not heart related as he remained standing til I persuaded
This is a long list of my husbands ailments with only one question at the end.He has coronary artery stents ( 2005), Permanent AF since 2012, Peripheral arterial disease. Sleep apnoea uses CPAP machine. Strange absence event in Feb (cardiologist says not heart related as he remained standing til I persuaded
Bagrat
in
British Heart Foundation
11 months ago
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Question
Do you have to take meds forever after heart surgery and do you get a cardiologist after surgery to go to , t asking for a friend
Do you have to take meds forever after heart surgery and do you get a cardiologist after surgery to go to , t asking for a friend
LonerIQ
in
British Heart Foundation
11 months ago
Continued Journey
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
FiArt12X
in
CLL Support
24 days ago
Right bundle branch block
Hi, I've been suffering from long covid for quite a few months now and I had an ECG a couple of weeks ago also saw the Cardiologist who said L. C has caused my heart problems again. I've been getting prep fainting spells every day and breathlessness. I received a letter today saying I have right bundle
Hi, I've been suffering from long covid for quite a few months now and I had an ECG a couple of weeks ago also saw the Cardiologist who said L. C has caused my heart problems again. I've been getting prep fainting spells every day and breathlessness. I received a letter today saying I have right bundle
Bowcat
in
AF Association
11 months ago
Continued Journey
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
FiArt12X
in
CLL Support
29 days ago
Myelofibrosis- GVHD graft, versus, host, disease.
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
1 month ago
Myelofibrosis - GVHD - graft, versus, host, disease
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
1 month ago
Heart bypass surgery
I had a heart attack almost 10 years ago and last week suffered another minor attack. I am currently in hospital as I had an angiogram but due to the extent of my heart disease I have been recommended for bypass surgery (subject to satisfactory scans etc). I have never had serious surgery like this before
I had a heart attack almost 10 years ago and last week suffered another minor attack. I am currently in hospital as I had an angiogram but due to the extent of my heart disease I have been recommended for bypass surgery (subject to satisfactory scans etc). I have never had serious surgery like this before
YorkshireBertie
in
British Heart Foundation
11 months ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
1 month ago
Continued Journey
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
FiArt12X
in
CLL Support
1 month ago
Atrial fibrillation in early 50s for no obvious reason
Hi, I'm 51 years old, fit, healthy, no high BP, don't smoke, eat mostly a plant based diet and had my first afib episode a month ago. A&E couldn't find a cause and put it down to dehydration and over doing it. They sent me away with no medication. A fews weeks later I started getting migraines with aura
Hi, I'm 51 years old, fit, healthy, no high BP, don't smoke, eat mostly a plant based diet and had my first afib episode a month ago. A&E couldn't find a cause and put it down to dehydration and over doing it. They sent me away with no medication. A fews weeks later I started getting migraines with aura
Sweet-Potato
in
AF Association
9 months ago
Aortic stenosis
Morning all , I’m 14 months post my second ablation which was an RF redo to tidy up the PV and left atrial floor as I was told . I’m very pleased with my progress so far with only two mild and short episodes of AF . I also have mild to moderate stenosis of the valve which I was told in 2017 would have
Morning all , I’m 14 months post my second ablation which was an RF redo to tidy up the PV and left atrial floor as I was told . I’m very pleased with my progress so far with only two mild and short episodes of AF . I also have mild to moderate stenosis of the valve which I was told in 2017 would have
Hammerboy
in
AF Association
9 months ago
SCT journey update No.3
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
LFCLove
in
MPN Voice
1 month ago
Borderline TSH during cancer treatment
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
spongecat
in
Thyroid UK
1 month ago
Sinus rhythm with supraventricular ectopy.
Last December my Kardia mobile saw AFIB when I was sitting on a plane coming back from Egypt. It is not the first time, in fact there have been dozens of times when I have seen it. I went to the GP and he sent the kardia output to the cardiologist. Several cardiologists disagreed about the kardia
Last December my Kardia mobile saw AFIB when I was sitting on a plane coming back from Egypt. It is not the first time, in fact there have been dozens of times when I have seen it. I went to the GP and he sent the kardia output to the cardiologist. Several cardiologists disagreed about the kardia
richard_jw
in
AF Association
11 months ago
continuing the journey
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
FiArt12X
in
CLL Support
2 months ago
Has anyone navigated Medicare while trying to get the TPIAT?
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Skye_MC
Administrator
in
Chronic Pancreatitis Support
10 months ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
2 months ago
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