Search
Search
About
Log in
Join
Experiences with
Platelet transfusions
Posts
Communities
1,583 public posts
Filter results
EPO testing
Hi, my wife has MF and has been having RBC transfusions reasonably often, I did ask her consultant if he had ever checked her baseline EPO levels, I didn't get an answer. He says she has a chronic bleed, but there is no evidence of passing any blood at all. I have done some research which indicates that
Hi, my wife has MF and has been having RBC transfusions reasonably often, I did ask her consultant if he had ever checked her baseline EPO levels, I didn't get an answer. He says she has a chronic bleed, but there is no evidence of passing any blood at all. I have done some research which indicates that
jointpain
in
MPN Voice
1 year ago
Myelofibrosis and fedratinib
Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Bullace
in
MPN Voice
1 year ago
Where Do We Go From Here
Hello Everyone hope you're well.. So after my husbands varices bleed out and emergency operation my husbands consultant got him in with interventional radiology to perform procedure to remove blood clot from the shunt failed and the 2 back ups consultant had suggested failed due to 2 more blood clots
Hello Everyone hope you're well.. So after my husbands varices bleed out and emergency operation my husbands consultant got him in with interventional radiology to perform procedure to remove blood clot from the shunt failed and the 2 back ups consultant had suggested failed due to 2 more blood clots
DD75
in
British Liver Trust
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Who knew there is an MRI that will show RLS sufferers have no iron in a the Substantia Nigra part of the brain.
https://youtu.be/4gXrvx6zkR8 The late professor Allen , certainly worth watching More children suffer from RLS than epilepsy MRI can show our brain iron deficiency I hope this link works for you He was gracious enough to respond to my emails before he passed away , very compassionate man
https://youtu.be/4gXrvx6zkR8 The late professor Allen , certainly worth watching More children suffer from RLS than epilepsy MRI can show our brain iron deficiency I hope this link works for you He was gracious enough to respond to my emails before he passed away , very compassionate man
Shumbah
in
Restless Legs Syndrome
1 year ago
Royal Marsden Hospital Sutton - anyone else being treated there?
Hi I have primary myelofibrosis, still on rux 15 mg twice a day. Don’t seem to qualify for any of the other meds, 🙁 and I’m getting by with blood transfusions every month or so. Intervals irregular. . I’m living back in Surrey now ( had been treated at Guys, then Oxford, then local hosp at Redhill
Hi I have primary myelofibrosis, still on rux 15 mg twice a day. Don’t seem to qualify for any of the other meds, 🙁 and I’m getting by with blood transfusions every month or so. Intervals irregular. . I’m living back in Surrey now ( had been treated at Guys, then Oxford, then local hosp at Redhill
Gipsy123
in
MPN Voice
1 year ago
Almost died of flu, pneumonia and sepsis - will the fear of death go away?
Hi all, I'm so happy there's an online community for people who've been in an ICU! I'm 53 years old and prior to this thought I was really healthy. I'm a hillwalker and regularly climb large Scottish mountains. The consultants in the hospital kept referring to me as "young and fit" which does wonders
Hi all, I'm so happy there's an online community for people who've been in an ICU! I'm 53 years old and prior to this thought I was really healthy. I'm a hillwalker and regularly climb large Scottish mountains. The consultants in the hospital kept referring to me as "young and fit" which does wonders
helen_m
in
ICUsteps
1 year ago
lutetium 177
after exploring options in Germany and London my husband had his first treatment in London on 6 April, he had pain about day 10 to 14 as the steroids finished and then pain passed. We were not expecting g the continual bleeding that started on day 18. My husband has a Foley catheter so it’s is just continual
after exploring options in Germany and London my husband had his first treatment in London on 6 April, he had pain about day 10 to 14 as the steroids finished and then pain passed. We were not expecting g the continual bleeding that started on day 18. My husband has a Foley catheter so it’s is just continual
FionaElbourne
in
Advanced Prostate Cancer
1 year ago
Two blood transfusions ,home now. Just learning to stand again ,he wants to fight and do pluvicto may 5. prayers ? Tremor control ?
Hi all. Ty for your support as always. Five days feeding him in hospital and moving him etc, was so hard . Back on duty tomorrow. I miss him so but got weak . He's out of hospital and I'm shocked from a curled up humble position he's choosing to pray they give him pluvicto . His Dr put it through but
Hi all. Ty for your support as always. Five days feeding him in hospital and moving him etc, was so hard . Back on duty tomorrow. I miss him so but got weak . He's out of hospital and I'm shocked from a curled up humble position he's choosing to pray they give him pluvicto . His Dr put it through but
Daddyishealing
in
Advanced Prostate Cancer
1 year ago
My girlfriend
So im here to learn and try and help my partner who means the world to me,She has RLS and spent a few years addicted to nurophen plus which helped her alot shes been off them for 2years plus now and ive never been soo proud of someone, no other tablets helps u name it shes tried it. I have never seen
So im here to learn and try and help my partner who means the world to me,She has RLS and spent a few years addicted to nurophen plus which helped her alot shes been off them for 2years plus now and ive never been soo proud of someone, no other tablets helps u name it shes tried it. I have never seen
Hidden
in
Restless Legs Syndrome
1 year ago
Breathlessness and headaches
Hello everyone Just wondering what your thoughts are on my current situation. I have been on Niraparib since July 2022 with no major side effects and for about the last 4 weeks I have been experiencing breathlessness on exertion, headaches, occasional nausea, extreme night sweats and fatigue. I saw
Hello everyone Just wondering what your thoughts are on my current situation. I have been on Niraparib since July 2022 with no major side effects and for about the last 4 weeks I have been experiencing breathlessness on exertion, headaches, occasional nausea, extreme night sweats and fatigue. I saw
Purplepansies54
in
My Ovacome
1 year ago
Always trust your instincts
Hello Everyone, Firstly thank you to everyone on this forum and the BLT nurses. You're all supportive so thank you. I suppose my post this evening is trust your instincts. In February this year my husband broke his knee and wrist and became pretty much sofa bound until he came out of hospital recently
Hello Everyone, Firstly thank you to everyone on this forum and the BLT nurses. You're all supportive so thank you. I suppose my post this evening is trust your instincts. In February this year my husband broke his knee and wrist and became pretty much sofa bound until he came out of hospital recently
DD75
in
British Liver Trust
1 year ago
Bone Marrow
Can you tell me what you’ve experienced with bone marrow involvement? How do they know it’s reached bone marrow? What tests? Does it change the medication options? Transfusions not an option for me. What else can help? My B12 is very low. RBC is always just below normal but hemoglobin is always just
Can you tell me what you’ve experienced with bone marrow involvement? How do they know it’s reached bone marrow? What tests? Does it change the medication options? Transfusions not an option for me. What else can help? My B12 is very low. RBC is always just below normal but hemoglobin is always just
HbbM
in
SHARE Metastatic Breast Cancer
1 year ago
My Story for private endocrinologist - what Qs to ask? 🤔
This is everything I have sent to the private endocrinologist about the last two years, with supporting evidence…. Dear Private Endocrinologist, I believe I have symptoms of hypothyroid or central hypothyroid or an issue with HPT axis however my blood tests are within the NHS ranges. In the two
This is everything I have sent to the private endocrinologist about the last two years, with supporting evidence…. Dear Private Endocrinologist, I believe I have symptoms of hypothyroid or central hypothyroid or an issue with HPT axis however my blood tests are within the NHS ranges. In the two
Insomania
in
Thyroid UK
1 year ago
Can stress or worries make a big difference in FBC numbers?
My wife's FBC has changed significantly over the past few weeks, while her medication has been the same for a year. During the past year she has been on anagrelide 3 a day, hydroxy 3 a week keeping her platelets at or around 250 white cells at or around 40 though over the past 8 months her Hgb keeps
My wife's FBC has changed significantly over the past few weeks, while her medication has been the same for a year. During the past year she has been on anagrelide 3 a day, hydroxy 3 a week keeping her platelets at or around 250 white cells at or around 40 though over the past 8 months her Hgb keeps
jointpain
in
MPN Voice
1 year ago
Anyone else being seen at Royal Marsden Sutton?
Hi. Its a while since I’ve posted. I’m now being treated at the Royal Marsden in Sutton - are any other people being treated there? I have myelofibrosis. Would be nice to be in touch with others in the area. My husband developed a glioblastoma very suddenly 2 yrs ago and died within 3 months.
Hi. Its a while since I’ve posted. I’m now being treated at the Royal Marsden in Sutton - are any other people being treated there? I have myelofibrosis. Would be nice to be in touch with others in the area. My husband developed a glioblastoma very suddenly 2 yrs ago and died within 3 months.
Rachelthepotter
in
MPN Voice
1 year ago
Imbruvica
i was diagnosed with CLL in Dec. 2008 at age 69 ….i did w&w till i hit 400,000 WBC and went on Rituxan in June 2020 for 4 mo. and in remission. for approx. 1 year. My HGB went down to 5.5 and needed 6 blood transfusions over time. And lots of Prednisone to keep it up. I did more w&w through 2021 and
i was diagnosed with CLL in Dec. 2008 at age 69 ….i did w&w till i hit 400,000 WBC and went on Rituxan in June 2020 for 4 mo. and in remission. for approx. 1 year. My HGB went down to 5.5 and needed 6 blood transfusions over time. And lots of Prednisone to keep it up. I did more w&w through 2021 and
Candy1015
in
CLL Support
1 year ago
Tear in oesophagus
Hi Folks , Mum has cirrhosis of the liver , portal hypertension and oesophageal varcies , just out the hospital after getting two pins put in from a tear in oesophagus , blood transfusion , antibiotics etc should we be aware for another bleed , does this normally happen ? Any advice appreciated .
Hi Folks , Mum has cirrhosis of the liver , portal hypertension and oesophageal varcies , just out the hospital after getting two pins put in from a tear in oesophagus , blood transfusion , antibiotics etc should we be aware for another bleed , does this normally happen ? Any advice appreciated .
Sharonmcfarlane
in
British Liver Trust
1 year ago
Involvement Opportunity - PRaCTicAL Research Project (UK)
The British Liver Trust are excited to be working with NHS Lothian, University of Edinburgh, Scottish National Blood Transfusion Services (SNBTS) and Cell and Gene Therapy Catapult as part of a collaboration to create the first ‘Centre for Precision Cell Therapy for the Liver’ in the world. PRaCTicAL
The British Liver Trust are excited to be working with NHS Lothian, University of Edinburgh, Scottish National Blood Transfusion Services (SNBTS) and Cell and Gene Therapy Catapult as part of a collaboration to create the first ‘Centre for Precision Cell Therapy for the Liver’ in the world. PRaCTicAL
BritishLiverTrust1
Partner
in
British Liver Trust
1 year ago
Stage 4 ~ Now Losing Blood Somewhere
Hi, my husband was diagnosed stage 4 with lymph node and bladder neck margins involvement 3/2018. He has done chemo, radiation, and hormone therapy over the past 5 years. His PSA increased quickly starting in October 2022 and by December it was 27. Hormone therapy isn’t working as before, it appears
Hi, my husband was diagnosed stage 4 with lymph node and bladder neck margins involvement 3/2018. He has done chemo, radiation, and hormone therapy over the past 5 years. His PSA increased quickly starting in October 2022 and by December it was 27. Hormone therapy isn’t working as before, it appears
drb1966
in
Advanced Prostate Cancer
1 year ago
New treatment after being dropped from Pluvicto.
I was dropped from LU177 treatment in late January and started my first round of Docetaxel/Carboplatin on 01/30. Lab results on 02/17 showed my platelet count to be very low so was denied the second round of chemo. We did see a significant drop in PSA from 758 to 611 on that lab. My next lab 03/17 showed
I was dropped from LU177 treatment in late January and started my first round of Docetaxel/Carboplatin on 01/30. Lab results on 02/17 showed my platelet count to be very low so was denied the second round of chemo. We did see a significant drop in PSA from 758 to 611 on that lab. My next lab 03/17 showed
docbulldog
in
Advanced Prostate Cancer
1 year ago
1
...
9
10
11
...
80
Next page
10
20
30
40
50
60
70
80
Filter results
Clear filters
Posted in
All communities
CLL Support
180 results
Advanced Prostate Cancer
154 results
MPN Voice
138 results
View top 10 communities
Sort by
Most Relevant
Newest