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have you had trouble getting approved for stem cell transplant?
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
Plasmapool
in
MPN Voice
9 months ago
ankle fusion
Hi I’m just wondering if anyone has had an ankle fusion as I’m having one soon and I’m wondering how long I will be off my feet for, I will try and keep my story short, I fell off a door step 18 months ago and broke three bones in my ankle and leg, I was in hospital for a week and had pins and plate
Hi I’m just wondering if anyone has had an ankle fusion as I’m having one soon and I’m wondering how long I will be off my feet for, I will try and keep my story short, I fell off a door step 18 months ago and broke three bones in my ankle and leg, I was in hospital for a week and had pins and plate
Moonshine15
in
Pain Concern
1 year ago
Told that I can’t have Zoledronic Acid.
On this occasion it was for a
bone
spur
on my knee and not for the metabolic
bone
disease clinic.
On this occasion it was for a
bone
spur
on my knee and not for the metabolic
bone
disease clinic.
Angelicspirit
in
Bone Health and Osteoporosis UK
1 year ago
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Successfully treated my Multiple Myeloma and now in remission from both MM and PCA
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
I successfully completed my induction cycles for treatment of my Multiple Myeloma. Mayo Clinic confirmed I am in remission from MM. I completed collection of my stem cells for future transplant if needed. 9 days down there - 21 appointments. The Bone Marrow Transplant Center at the Mayo, does not mess
swwags
in
Advanced Prostate Cancer
10 months ago
Immune Responses + Autoimmune Myelofibrosis
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
There were some posts a few weeks ago on adverse immune responses after vaccination for people using interferons. I had this experience while transitioning form HU to Peg, firstly with a covid jab last December and secondly with the first of the Shingrix jabs in March, which triggered, at the very least
LongETinUS
in
MPN Voice
11 months ago
Has my PMR changed?
Hi All Have been treated for PMR by Dr Hughes -have had op on right knee meniscus tear repair and removal of
bone
spur
and consultant said there was def something inflammatory going on.Am awaiting biopsy results.Was told it could take 3 months for my knee to settle down.Am in a lot of pain and knee
Hi All Have been treated for PMR by Dr Hughes -have had op on right knee meniscus tear repair and removal of
bone
spur
and consultant said there was def something inflammatory going on.Am awaiting biopsy results.Was told it could take 3 months for my knee to settle down.Am in a lot of pain and knee
bakingD
in
PMRGCAuk
1 year ago
Start of my stem cell journey 0.3.1 ambulatory care
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
I have been offered Ambulatory Care (treatment in a specialised day unit) for my stem cell transplant has anyone else gone through this process?
Grizly
in
MPN Voice
11 months ago
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
11 months ago
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
1 year 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
1 year 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
1 year 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
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
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
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
Strategic Masking to Protect Patients from All Respiratory Viral Infections
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
https://www.nejm.org/doi/full/10.1056/NEJMp2306223 - The end of the public health emergency in the United States is a richly symbolic milestone in the course of the SARS-CoV-2 pandemic. During the height of the pandemic, the virus killed millions of people worldwide, upended lives, and radically altered
lankisterguy
Volunteer
in
CLL Support
1 year ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
in
CLL Support
1 year ago
Tapering with new issues ongoing
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
Tapering while new issues arvine profile image arvine• 8 hours ago•1 Reply well I have told my story pretty well all along, including some family serious illnesses . In previous comments, I have mentioned my son, who has fought a battle actually since June 2017, beingdiagnosed with multiple myeloma
arvine
in
PMRGCAuk
1 year ago
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