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Mantle cell lymphoma (MCL)
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Start of my Stem Cell Journey 0.3
Well, where do I start. The transplant team wanted to increase my Rux to 10 mgs which has been really good for me. So much energy hardly any symptoms and overall feeling better. The fly in the ointment is my blood levels are dropping red cells were 80 and my platelets were in the 30’s. My Haematologist
Well, where do I start. The transplant team wanted to increase my Rux to 10 mgs which has been really good for me. So much energy hardly any symptoms and overall feeling better. The fly in the ointment is my blood levels are dropping red cells were 80 and my platelets were in the 30’s. My Haematologist
Grizly
in
MPN Voice
10 months ago
Autoimmune Registry
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
I didn't know there was an Autoimmune Registry. However polymyalgia rheumatica is not found through their opening page search although it is on the list as a vascular disease, as is giant cell arteritis. Maybe their search function is as useful as HU's (used to be)? :D Or maybe they just haven't got
HeronNS
in
PMRGCAuk
11 months ago
The current status and challenges of CAR-T therapy in CLL
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
A few members of this group are scheduled for CAR-T and others might find themselves in the same situation in the future so I thought this would be of interest. "[i]In recent years, novel immunotherapies, including CAR-T cell therapy, have greatly improved treatment options for patients with hematological
Jm954
Administrator
in
CLL Support
1 year ago
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RA and live flu vaccine
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
Julia31
in
NRAS
11 months ago
Post stem cell transplant vaccinations
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Platelets2022
in
Leukaemia Support
11 months ago
My Recovery so far post Stem cell Transplant
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Jm954
Administrator
in
CLL Support
11 months ago
Anyone had a coronary sinus reducer?
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
SomersetJo
in
British Heart Foundation
11 months ago
Positive IFA, Negative Parietal Cell, B-12 injections affect IFA test
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
mcg-woo
in
Pernicious Anaemia Society
1 year ago
Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread.
They didn't expressly refer to prostate cancer. But this is an issue that has been on my mind for a while. Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread. Https://m.jpost.com/health-and-wellness/article-757233 While many people may take
They didn't expressly refer to prostate cancer. But this is an issue that has been on my mind for a while. Antioxidants can help cancerous tumors grow new blood vessels, which helps the cancer to grow and spread. Https://m.jpost.com/health-and-wellness/article-757233 While many people may take
cesanon
in
Advanced Prostate Cancer
1 year ago
pink patches on skin
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Tortina
in
MPN Voice
1 year ago
Surviving in retirement
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
chipspesto
in
Advanced Prostate Cancer
1 year ago
An indicator in the blood could guide lupus treatment
A clinical trial (called “BEAT-Lupus”) has found that using a combination of two biologic treatments, rituximab and belimumab, may be more effective than using rituximab alone in patients who have not responded well to other treatment. They also found that people with a particular indicator in their
A clinical trial (called “BEAT-Lupus”) has found that using a combination of two biologic treatments, rituximab and belimumab, may be more effective than using rituximab alone in patients who have not responded well to other treatment. They also found that people with a particular indicator in their
Debbie_kinsey
Administrator
in
LUPUS UK
1 year ago
Brother’s passing away
it is with great devastation and heartbreak that my 65 yo brother passed on Monday 13/3/23. He was released from his 10th hospital admit in recent weeks and was approaching the chemist area when he collapsed. The staff made a valiant attempt to revive him. The ambulance medics kept doing CPR he
it is with great devastation and heartbreak that my 65 yo brother passed on Monday 13/3/23. He was released from his 10th hospital admit in recent weeks and was approaching the chemist area when he collapsed. The staff made a valiant attempt to revive him. The ambulance medics kept doing CPR he
honeybug
in
Fibromyalgia Action UK
1 year ago
start of my SCT journey
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Grizly
in
MPN Voice
1 year ago
How to pass the day
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
cycli
in
PMRGCAuk
1 year ago
Stem Cell Transplant update
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
I am now close to 6 months from my sct. I feel well in myself except for side affects from steroids which I should be off in a week. They make it difficult to sleep, make me hungry and over full of energy . Many of my blood counts are in normal range except for platelets. These keep yo-yoing around
Scaredy_cat
in
MPN Voice
1 year ago
On iron supplements but my ferritin did not increase
I started having a lot of symptoms of iron deficiency last year after correcting my long term B12 deficiency: dry mouth, palpitations, muscle twitches. It is possible that my iron had been low for a long time and I just didn't notice because my B12 had also been low. I started taking iron supplements
I started having a lot of symptoms of iron deficiency last year after correcting my long term B12 deficiency: dry mouth, palpitations, muscle twitches. It is possible that my iron had been low for a long time and I just didn't notice because my B12 had also been low. I started taking iron supplements
WhyAmISoTired
in
Thyroid UK
1 year ago
8 week check up
Had an 8 week check up at Herbert Herman Cancer Center today. Doc says I'm doing excellent. He ordered a PET scan a month after my final Gazyva infusion 3/20. Is this normal procedure for those on O&V 12 month course? I though I wouldn't have any more scary test until the end of treatment. On bright
Had an 8 week check up at Herbert Herman Cancer Center today. Doc says I'm doing excellent. He ordered a PET scan a month after my final Gazyva infusion 3/20. Is this normal procedure for those on O&V 12 month course? I though I wouldn't have any more scary test until the end of treatment. On bright
Gradyboy
in
CLL Support
1 year ago
My diagnosis has changed from Lymphoprolific none nodal mantle cell lymphoma age 56 to more of a CLL at 79 years.
I would like to know other peoples experience with CLL. My lymphocytes went up to 270 and I was started on Acalabrutinib 100mg twice daily. Have been on this for 100 days, This has brought the count down to 8.5 . I have had atrial fibrillation a year before starting on Acal, so I am on beta blocker
I would like to know other peoples experience with CLL. My lymphocytes went up to 270 and I was started on Acalabrutinib 100mg twice daily. Have been on this for 100 days, This has brought the count down to 8.5 . I have had atrial fibrillation a year before starting on Acal, so I am on beta blocker
Jennifer_africa
in
CLL Support
2 years ago
Insurance company refusing to pay out saying my Lymphoma is related to my CLL
I was diagnosed with CLL 14 years ago and had been on W&W for 12 years before I needed medical intervention. I was successfully treated with Alcalbrutinib and my CLL has been under control ever since.As I am self employed, I took out an income protection policy about 5 years ago, knowing that my CLL
I was diagnosed with CLL 14 years ago and had been on W&W for 12 years before I needed medical intervention. I was successfully treated with Alcalbrutinib and my CLL has been under control ever since.As I am self employed, I took out an income protection policy about 5 years ago, knowing that my CLL
duncangarnham
in
CLL Support
1 year ago
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