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Support ,tears , questions. Low hemoglobin . Severe pain l4l5 s1. ( Facet injections failed ) . Severely anemic ,three months bed ridden
I can't think of a specific question and I'm getting anxiety just reaching out bc my dad is holding on to life so hard and his smile ha been gone . Last I wrote they believed my dad became bedridden bc of severe arthritis in l4l5 s1. He underwent a series of two facet joint injections as well as two
I can't think of a specific question and I'm getting anxiety just reaching out bc my dad is holding on to life so hard and his smile ha been gone . Last I wrote they believed my dad became bedridden bc of severe arthritis in l4l5 s1. He underwent a series of two facet joint injections as well as two
Daddyishealing
in
Fight Prostate Cancer
1 year ago
Completed 5 doses Lu177; complications of marrow damage and renal toxicity
Recently completed 5th course LU177; PSA initially 16, now at 0.08. However, Hgb dropped from 9.7 to 7.3 after last infusion, requiring 2 units RBS transfusion. Additionally, creatinine increased from 1.2 to 2.0, indicating significant renal toxicity. Will forego last LU177 infusion. For those
Recently completed 5th course LU177; PSA initially 16, now at 0.08. However, Hgb dropped from 9.7 to 7.3 after last infusion, requiring 2 units RBS transfusion. Additionally, creatinine increased from 1.2 to 2.0, indicating significant renal toxicity. Will forego last LU177 infusion. For those
TWTJr
in
Advanced Prostate Cancer
1 year ago
Post SCT haematomachrosis
My now 6 monthly bloods done last year revealed high ferritin. I subsequently had 6 venesections, 1 a month. My follow up, delayed by COVID, revealed a still high ferritin at 2000, down from around 3000. The consultant was a bit surprised it was still that high. I was a bit disappointed and concerned
My now 6 monthly bloods done last year revealed high ferritin. I subsequently had 6 venesections, 1 a month. My follow up, delayed by COVID, revealed a still high ferritin at 2000, down from around 3000. The consultant was a bit surprised it was still that high. I was a bit disappointed and concerned
Dodders
in
MPN Voice
1 year ago
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Loosing the will to live
I was diagnosed with Hashimoto's Disease in 1996. Luckily my GP screened for the antibodies as my T4 was borderline; purely because his daughter had been diagnosed with it. At the time I was passing out all the time, I had developed psoriasis, I had brain fog, depression and a host of other symptoms
I was diagnosed with Hashimoto's Disease in 1996. Luckily my GP screened for the antibodies as my T4 was borderline; purely because his daughter had been diagnosed with it. At the time I was passing out all the time, I had developed psoriasis, I had brain fog, depression and a host of other symptoms
HocusPocus
in
Thyroid UK
1 year ago
missed diagnosis
hi all. I was diagnosed with Hep C in 2020 after being referred to specialist due to results of some routine blood tests. It’s most likely that it was a result of a blood transfusion in 1986. Following treatment I am now clear of the virus but sadly have developed cirrhosis. I have a life policy that
hi all. I was diagnosed with Hep C in 2020 after being referred to specialist due to results of some routine blood tests. It’s most likely that it was a result of a blood transfusion in 1986. Following treatment I am now clear of the virus but sadly have developed cirrhosis. I have a life policy that
Ruby1960
in
Hepatitis C Trust
1 year ago
Impact of stopping and starting Niraparib
Hello everyone I am stage 4 ovarian cancer. 8 rounds of Carbo taxol and full debulking surgery Feb 2022. Just wondered what the impact was of interrupting Niraparib treatment. I started Niraparib 200mg in June 2022 then increased to 300mg in September. Stopped for three weeks in November due to low
Hello everyone I am stage 4 ovarian cancer. 8 rounds of Carbo taxol and full debulking surgery Feb 2022. Just wondered what the impact was of interrupting Niraparib treatment. I started Niraparib 200mg in June 2022 then increased to 300mg in September. Stopped for three weeks in November due to low
Purplepansies54
in
My Ovacome
1 year ago
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
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
1 year 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
1 year 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
1 year 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
1 year 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
1 year 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
1 year 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
1 year 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
1 year 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
1 year 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
1 year ago
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