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Calquence. No energy, not eating, not drinking. Delayed side effects or something else?
Hello, everyone. We are new here, family support and looking for some answers. Sorry, this may be a long post. tl;dr at the bottom. Brief background. Patient is a male in his late 70s. About 7 years ago was originally diagnosed with CLL and treated and put into remission. Around July of 2023 the CLL
Hello, everyone. We are new here, family support and looking for some answers. Sorry, this may be a long post. tl;dr at the bottom. Brief background. Patient is a male in his late 70s. About 7 years ago was originally diagnosed with CLL and treated and put into remission. Around July of 2023 the CLL
CuriousFamily
in
CLL Support
2 months ago
Jevtana
Once again I am asking for any information that can be provided from this great group. Would appreciate any information for Jevtana treatment. At doctor's appt yesterday, my husband's hemoglobin had decreased to 7.6 and he had to have a blood transfusion. His Alkaline Phosphatase went up again. He
Once again I am asking for any information that can be provided from this great group. Would appreciate any information for Jevtana treatment. At doctor's appt yesterday, my husband's hemoglobin had decreased to 7.6 and he had to have a blood transfusion. His Alkaline Phosphatase went up again. He
MsHope
in
Advanced Prostate Cancer
2 months ago
Momelitinib
Is anyone here with MF taking momelitinib.I'd like to know how you're doing on the drug and if you have any side effects? I may qualify to take it....I've received a letter from my haematology doctor and meet up with him soon.At the.moment I am transfusion dependant . I am Jak 2. Thanks Lynn.
Is anyone here with MF taking momelitinib.I'd like to know how you're doing on the drug and if you have any side effects? I may qualify to take it....I've received a letter from my haematology doctor and meet up with him soon.At the.moment I am transfusion dependant . I am Jak 2. Thanks Lynn.
champ30
in
MPN Voice
2 months ago
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Iron results - what would you do?
In the seemingly endless quest to feel properly well I had a full iron panel done. The last one I had done was 2 years ago, 6 months after an iron transfusion. I've got a bit of a mixed bag here so I'd be grateful for some thoughts. It's getting worse, generally, I'm just not sure if now is the right
In the seemingly endless quest to feel properly well I had a full iron panel done. The last one I had done was 2 years ago, 6 months after an iron transfusion. I've got a bit of a mixed bag here so I'd be grateful for some thoughts. It's getting worse, generally, I'm just not sure if now is the right
WitchingHour2point0
in
Thyroid UK
2 months ago
Sadly Not Just Thyroid Patients
I've been following the infected blood scandal with interest, basically thousands of patients in the 70's, 80's and early 90's were given blood transfusions/ products that were cheaply imported, often from USA, and not screened for Hep C. This was to save the NHS money. Unfortunately many people became
I've been following the infected blood scandal with interest, basically thousands of patients in the 70's, 80's and early 90's were given blood transfusions/ products that were cheaply imported, often from USA, and not screened for Hep C. This was to save the NHS money. Unfortunately many people became
Sparklingsunshine
in
Thyroid UK
2 months ago
iron clinic - transfusions
hello - has anyone accessed an iron transfusion via the Harley street iron clinic? Despite all my other iron readings being fine my ferritin level remains at 56 …. I have tried repeatedly to access a transfusion via the nhs but to no avail - has anyone had experience of going privately via this London
hello - has anyone accessed an iron transfusion via the Harley street iron clinic? Despite all my other iron readings being fine my ferritin level remains at 56 …. I have tried repeatedly to access a transfusion via the nhs but to no avail - has anyone had experience of going privately via this London
Drls
in
Restless Legs Syndrome
2 months ago
Two for Chemotherapy, Both My Wife and I, Her with TNBC and Myself now with PCA Liver Mets
Today is Two for Chemotherapy My wife discovered a lump in her breast in November2023, called for mammogram and they, Montefiore NY, made her wait to January 16th, of course she didn’t know TNBC grows at approximately 1% a day. So, January 16th, they did Mammogram, MRI, Ultrasound and Biopsy.
Today is Two for Chemotherapy My wife discovered a lump in her breast in November2023, called for mammogram and they, Montefiore NY, made her wait to January 16th, of course she didn’t know TNBC grows at approximately 1% a day. So, January 16th, they did Mammogram, MRI, Ultrasound and Biopsy.
Shorehousejam
in
Advanced Prostate Cancer
2 months ago
possible hep c infection
I wonder if anyone can advise me please. My wonderful 76 year old mum was given a blood transfusion after the birth of me 48 years ago. Over the years her blood test has shown slightly elevated bilirubin but no further action was taken, I think we hoped it would be Gilbert’s syndrome. I know she knows
I wonder if anyone can advise me please. My wonderful 76 year old mum was given a blood transfusion after the birth of me 48 years ago. Over the years her blood test has shown slightly elevated bilirubin but no further action was taken, I think we hoped it would be Gilbert’s syndrome. I know she knows
Worrylou
in
British Liver Trust
2 months ago
Any guidance appreciated!
Hi everyone, My Dad (77) diagnosed in January w/ stage 4 PC, mets to L5 spine. PET scan showed no other spots elsewhere. PSA was 19 at time of diagnosis, Gleason 10. BRCA negative. PSA is now at 0.2 since starting hormone therapy. Feeling good, no pain. Still works (owns his own company). Started
Hi everyone, My Dad (77) diagnosed in January w/ stage 4 PC, mets to L5 spine. PET scan showed no other spots elsewhere. PSA was 19 at time of diagnosis, Gleason 10. BRCA negative. PSA is now at 0.2 since starting hormone therapy. Feeling good, no pain. Still works (owns his own company). Started
LDC2024
in
Advanced Prostate Cancer
2 months ago
A bit confused
I notice quite often that posts here include results of acronyms such as ALT, LPT etc and things like Bilrubin. Are they important and how do you get hold of these please as we have never heard of them before coming on here? My husband was diagnosed 4 years ago with Cirrhosis and has been in and out
I notice quite often that posts here include results of acronyms such as ALT, LPT etc and things like Bilrubin. Are they important and how do you get hold of these please as we have never heard of them before coming on here? My husband was diagnosed 4 years ago with Cirrhosis and has been in and out
Breakfastbabe
in
British Liver Trust
2 months ago
Gabapentin and liver resection
The help I have been given from this forum has been invaluable, I don't know where I would be without it. I have weaned myself off of Pramipexole and am now using Gabapentin, I don't think I have suffered anything like some of the other members. My question is, I need to up the dose, I am taking 1 x
The help I have been given from this forum has been invaluable, I don't know where I would be without it. I have weaned myself off of Pramipexole and am now using Gabapentin, I don't think I have suffered anything like some of the other members. My question is, I need to up the dose, I am taking 1 x
Ozzey
in
Restless Legs Syndrome
2 months ago
Anyone turn down a stem cell transplant?
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
LongETinUS
in
MPN Voice
3 months ago
Need advice on clinical trial RO7656594
I have updated our profile, but in a nutshell we've gone through abiraterone, Xtandi, docetaxel, Pluvicto , cabazitaxel and carboplatin. My husband's most recent PSA on 4/12 was 79.52. His MO has put a hold on chemo our last 3 appointments due to pancytopenia. He's received 2 blood transfusions on his
I have updated our profile, but in a nutshell we've gone through abiraterone, Xtandi, docetaxel, Pluvicto , cabazitaxel and carboplatin. My husband's most recent PSA on 4/12 was 79.52. His MO has put a hold on chemo our last 3 appointments due to pancytopenia. He's received 2 blood transfusions on his
Yadifan
in
Advanced Prostate Cancer
3 months ago
Perplexed over lab work
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
Hello, I am a 32 y/o white female. Some history about me that may be applicable: Surgeries: Gallbladder removed (2011), Gastric Sleeve (2017) Weight loss surgery: Started at 332lbs, currently fluctuate between 178-185. Diagnoses: Major Depressive Disorder, GERD (resulting from WLS), ADHD, Anemia
aybaylay
in
Pernicious Anaemia Society
3 months ago
An update
It's been a long while for me to post my husband has been watch and wait for 12 years now but yesterday he was informed that his haemoglobin had gone down dramatically from 113 to 67 and his white cell count had gone up from 65 to 250 in just 2 months he was at hospital yesterday and has to have a blood
It's been a long while for me to post my husband has been watch and wait for 12 years now but yesterday he was informed that his haemoglobin had gone down dramatically from 113 to 67 and his white cell count had gone up from 65 to 250 in just 2 months he was at hospital yesterday and has to have a blood
Nikkij81
in
CLL Support
3 months ago
stage 4 Mets in all his skeleton
my husband who has been on this journey for 4 1/2 years. It has finally taken its toll his platelets and blood counts have been low for the last four months and he has been given transfusions every week. He cannot continue with any more treatments . Psa 1800 Mets in his entire skeleton. has anyone
my husband who has been on this journey for 4 1/2 years. It has finally taken its toll his platelets and blood counts have been low for the last four months and he has been given transfusions every week. He cannot continue with any more treatments . Psa 1800 Mets in his entire skeleton. has anyone
Lakehouse32
in
Advanced Prostate Cancer
4 months ago
New Drug may be relevant to MF, ET
A new drug for pulmonary hypertension, (PAH) Sotatercept, has just been approved. PAH is not a typical MPN worry, but it has side effects that may be relevant to MPN. It can increase Hb and decrease PLT. These are listed as adverse effects in the label. Some researchers made the MPN connection.
A new drug for pulmonary hypertension, (PAH) Sotatercept, has just been approved. PAH is not a typical MPN worry, but it has side effects that may be relevant to MPN. It can increase Hb and decrease PLT. These are listed as adverse effects in the label. Some researchers made the MPN connection.
EPguy
in
MPN Voice
4 months ago
Progress?
Good morning, not really after any advice just some thoughts from you lovely people. Basically in Oct ‘23 I had a massive variceal bleed, 6l blood transfusion and a 9% survival rate, very jaundice, lost over 3 stone bringing me to just under 6 stone, progonsees liver failure, put on a transplant list
Good morning, not really after any advice just some thoughts from you lovely people. Basically in Oct ‘23 I had a massive variceal bleed, 6l blood transfusion and a 9% survival rate, very jaundice, lost over 3 stone bringing me to just under 6 stone, progonsees liver failure, put on a transplant list
Starlight79
in
British Liver Trust
4 months ago
Lupus or another Autoimmune Disease?
I’m 50 yr old female with issues, RLS, Hashimotos, Autoimmune Atrophic Chronic Gastritis, intestinal Metaplasia, Iron Deficiency Anemia w/transfusions, B12 deficiency, and now this horrible hip and joint pain. I know if you have one Autoimmune Disease you’re likely to have more. I’ve had a full work
I’m 50 yr old female with issues, RLS, Hashimotos, Autoimmune Atrophic Chronic Gastritis, intestinal Metaplasia, Iron Deficiency Anemia w/transfusions, B12 deficiency, and now this horrible hip and joint pain. I know if you have one Autoimmune Disease you’re likely to have more. I’ve had a full work
Milescircus
in
LUPUS UK
4 months ago
Please advise - symptoms worsening
Hi all, As you may remember from previous posts, I’m still borderline anaemic and so I increased my iron dosage as per instructions several weeks ago. My FT3 has also plummeted from a decade average of 6 to now 4.8 (range 3.1-6.8) I’m getting horrific migraines (they start with blinding auras). I stopped
Hi all, As you may remember from previous posts, I’m still borderline anaemic and so I increased my iron dosage as per instructions several weeks ago. My FT3 has also plummeted from a decade average of 6 to now 4.8 (range 3.1-6.8) I’m getting horrific migraines (they start with blinding auras). I stopped
Suzanneharb
in
Thyroid UK
4 months ago
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