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Update
Hi ladies l hope you are all as well as you can be. I said back in July l would give you a update after finishing 6th recurrence. Thankfully the chemo has done it's job once more apart from a bit of spread in the peritoneal cavity generally things are good and ca125 has gone down to 16. Unfortunately
Hi ladies l hope you are all as well as you can be. I said back in July l would give you a update after finishing 6th recurrence. Thankfully the chemo has done it's job once more apart from a bit of spread in the peritoneal cavity generally things are good and ca125 has gone down to 16. Unfortunately
Lewisriley47
in
My Ovacome
1 year ago
Hold on BiTE study
My husband was supposed to start being evaluated for the BiTE study but ended up in the hospital instead. He was low on fluids, iron, calcium, and a number of other things and was too nauseous to eat or drink almost anything. Everyday his blood numbers dropped till his hemoglobin was 6.7 and they transfused
My husband was supposed to start being evaluated for the BiTE study but ended up in the hospital instead. He was low on fluids, iron, calcium, and a number of other things and was too nauseous to eat or drink almost anything. Everyday his blood numbers dropped till his hemoglobin was 6.7 and they transfused
Wyldhare22
in
Advanced Prostate Cancer
1 year ago
MS and Iron deficiency anemia
on Jan 1 2023 I was taken to emergency room. I was barely able to do anything. I short of breath, heart pounding and extremely exhausted. I would be in bed for hour. I was admitted to the hospital for sever anemia. I was given a blood transfusion and intravenous iron. I had an upper and lower gi which
on Jan 1 2023 I was taken to emergency room. I was barely able to do anything. I short of breath, heart pounding and extremely exhausted. I would be in bed for hour. I was admitted to the hospital for sever anemia. I was given a blood transfusion and intravenous iron. I had an upper and lower gi which
SaraSmile2021
in
My MSAA Community
1 year ago
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Calling all BAT-men ...
(... that's you, Russ!) I am about to begin BAT with a new MO (who works in MA and NH), and am looking for some input from forum members. My MO has an existing contact at Johns Hopkins that he's consulted, but is not (yet) in direct contact with anyone from Denmeade's group so far as I know. A little
(... that's you, Russ!) I am about to begin BAT with a new MO (who works in MA and NH), and am looking for some input from forum members. My MO has an existing contact at Johns Hopkins that he's consulted, but is not (yet) in direct contact with anyone from Denmeade's group so far as I know. A little
noahware
in
Advanced Prostate Cancer
1 year ago
High Alkaline Phosphatase and knee/bone pain side effects with Venetoclax/Obinituzumab
Hi folks My question is about side effects with Venetoclax and Obinituzumab. I wonder if anyone out there has any insights. I'm 66, was diagnosed in July 2020. Watch & wait until July 2022. Started Venetoclax and Obinituzumab in New York at Sloan Kettering. I’ve completed the Obinituzumab, and
Hi folks My question is about side effects with Venetoclax and Obinituzumab. I wonder if anyone out there has any insights. I'm 66, was diagnosed in July 2020. Watch & wait until July 2022. Started Venetoclax and Obinituzumab in New York at Sloan Kettering. I’ve completed the Obinituzumab, and
DinosaurDad
in
CLL Support
2 years ago
Bone Marrow and blood cells
My husband has been in the hospital for a week. He had been struggling to eat and drink due to nausea. His oncologist had him come in and they gave him a liter of saline and sent him home. We are rural and live an hour from the oncologist and any hospitals. When we got home that evening, it took him
My husband has been in the hospital for a week. He had been struggling to eat and drink due to nausea. His oncologist had him come in and they gave him a liter of saline and sent him home. We are rural and live an hour from the oncologist and any hospitals. When we got home that evening, it took him
Wyldhare22
in
Advanced Prostate Cancer
2 years ago
excessive bleeding when taking oestrogen (zumenon) ???
hi ladies ❤️ As a bit of background, I have started on oestrogen over a week ago for a trail month for an ERA after multiple fails transfers and rounds. My cycle started on the 8th on jan so I stared on zumenon that’s day, my period was going normal up untill day 4 (Wednesday). I would usually start
hi ladies ❤️ As a bit of background, I have started on oestrogen over a week ago for a trail month for an ERA after multiple fails transfers and rounds. My cycle started on the 8th on jan so I stared on zumenon that’s day, my period was going normal up untill day 4 (Wednesday). I would usually start
Kgee17
in
Fertility Network UK
2 years ago
Does anyone know how can I access an iron transfusion?
Hello, My last ferritin level from a blood test in September was 73, since that date I have had a Tia ( mini stroke) and then when the medication given for that put my rls through the roof I was so sleep deprived I fell and broke my foot in three places…. I still can’t walk properly. Things have
Hello, My last ferritin level from a blood test in September was 73, since that date I have had a Tia ( mini stroke) and then when the medication given for that put my rls through the roof I was so sleep deprived I fell and broke my foot in three places…. I still can’t walk properly. Things have
Drls
in
Restless Legs Syndrome
2 years ago
Getting transfusion dependent
Hi. I have myelofibrosis which was diagnosed abt six years ago, and I’ve been on ruxolitinib 15 mg twice a day pretty much since diagnosis. I originally took EPO injections, but when I switched hospitals, they didn’t have the same formulation and I stopped And trying to manage chilled EPO injections
Hi. I have myelofibrosis which was diagnosed abt six years ago, and I’ve been on ruxolitinib 15 mg twice a day pretty much since diagnosis. I originally took EPO injections, but when I switched hospitals, they didn’t have the same formulation and I stopped And trying to manage chilled EPO injections
Rachelthepotter
in
MPN Voice
2 years ago
Prostate Cancer in Bone Marrow causing low RBC does Pluvicto help? First dose 10/28/22, PSA DOUBLED, had two transfusions next dose Monday.
Does Pluvicto help clear bone marrow so RBC's can grow and increase hemoglobin levels? So for WBC and platelets are ok.
Does Pluvicto help clear bone marrow so RBC's can grow and increase hemoglobin levels? So for WBC and platelets are ok.
Rhalo
in
Advanced Prostate Cancer
2 years ago
Souls on Fire - A tribute to the journey.
As most of you know HDguy61 was my guy. He passed away peacefully in December after being transfusion dependent for 6 months. Dealing with a chronic illness of my own (stage 4 cirrhosis), I relate very much to the need to find joy even in the midst of uncertainty. We were very good at that together.
As most of you know HDguy61 was my guy. He passed away peacefully in December after being transfusion dependent for 6 months. Dealing with a chronic illness of my own (stage 4 cirrhosis), I relate very much to the need to find joy even in the midst of uncertainty. We were very good at that together.
Zengal79
in
Advanced Prostate Cancer
2 years ago
Low blood count.
Why is it hard to get a blood transfusion.
Why is it hard to get a blood transfusion.
davidleigh
in
Pernicious Anaemia Society
2 years ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
2 years ago
Living with Cll
I just want to say that at first I was afraid to start treatment and waited longer than usual , I had a white blood cell count of 270,000 with no B symptoms ie fever, chills or night sweats. But because I heard that the treatment was sometimes worse than watch and wait I procrastinated, when I started
I just want to say that at first I was afraid to start treatment and waited longer than usual , I had a white blood cell count of 270,000 with no B symptoms ie fever, chills or night sweats. But because I heard that the treatment was sometimes worse than watch and wait I procrastinated, when I started
starlifter
in
CLL Support
2 years ago
Monofer is making me feel crap
Hi, I had an iron infusion 10 days ago as I had Feratin at 10 and low iron transfusions. I am sure in long run it will help me but Monofer is making my life bit of hell. Not slept one night in the past 10 days without waking up in the middle of the night. My sleep quality has been crap. (a) has anyone
Hi, I had an iron infusion 10 days ago as I had Feratin at 10 and low iron transfusions. I am sure in long run it will help me but Monofer is making my life bit of hell. Not slept one night in the past 10 days without waking up in the middle of the night. My sleep quality has been crap. (a) has anyone
abhishekjoshi9
in
Pernicious Anaemia Society
2 years ago
My Experience With WARFARIN and ELIQUIS
Warfarin for 27 months and friends noticed my coloring was pale. Nearly passed out walking to car in a large parking lot. Had lab draw blood next day, and CBC revealed RED BLOOD CELL COUNT down to 5.8. Supposed to be 13. I was bleeding internally somewhere. Hospitalized and given transfusions and an
Warfarin for 27 months and friends noticed my coloring was pale. Nearly passed out walking to car in a large parking lot. Had lab draw blood next day, and CBC revealed RED BLOOD CELL COUNT down to 5.8. Supposed to be 13. I was bleeding internally somewhere. Hospitalized and given transfusions and an
Warfarin2014
in
Anticoagulation Support
2 years ago
My Cousin John Is Gone
Although it has been a few months since he passed away --- On March 17, 2022, at the age of 66 --- my cousin John was a life-long fighter, having had prostate cancer for about 8 years, like myself. John and I grew up together in South Carolina as best friends, doing most things together. He had originally
Although it has been a few months since he passed away --- On March 17, 2022, at the age of 66 --- my cousin John was a life-long fighter, having had prostate cancer for about 8 years, like myself. John and I grew up together in South Carolina as best friends, doing most things together. He had originally
fmh1
in
Advanced Prostate Cancer
2 years ago
almost 200 days post SCT update
Spurred on by Jennie’s update earlier, I thought it was high time that I wrote an update on my progress. I’m almost at 200 days post transplant. I’ve hardly had any issues so far other than my Hb count has sat quite stubbornly at or around 80 for the past couple of months. This has resulted in a good
Spurred on by Jennie’s update earlier, I thought it was high time that I wrote an update on my progress. I’m almost at 200 days post transplant. I’ve hardly had any issues so far other than my Hb count has sat quite stubbornly at or around 80 for the past couple of months. This has resulted in a good
ConniesDad
in
MPN Voice
2 years ago
Day +99
Hello friends, Well I am almost at 100 days post transplant and feeling surprisingly well under the circumstances. My check ups have been reduced to once a week and my blood counts are slowly improving. Hb currently at 89 and platelets at 46 so my donor cells are working hard and I haven't needed a
Hello friends, Well I am almost at 100 days post transplant and feeling surprisingly well under the circumstances. My check ups have been reduced to once a week and my blood counts are slowly improving. Hb currently at 89 and platelets at 46 so my donor cells are working hard and I haven't needed a
Otterfield
in
MPN Voice
2 years ago
(Originally posted by Hunter) "Recent forum presented by our friends at MPN Advocacy & Education International"
Hunter found this presentation: https://healthunlocked.com/mpnvoice/posts/148836859/boston-mpn-patient-caregiver-program-presented-by-mpn-advocacy-education-international Great find. I went through the videos and have some notes/comments. I figured a top post should be most helpful. --
Dr. Raagit
Hunter found this presentation: https://healthunlocked.com/mpnvoice/posts/148836859/boston-mpn-patient-caregiver-program-presented-by-mpn-advocacy-education-international Great find. I went through the videos and have some notes/comments. I figured a top post should be most helpful. --
Dr. Raagit
EPguy
in
MPN Voice
2 years ago
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