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I have TP53
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
Doremefasol
in
CLL Support
5 years ago
10 months post Stem Cell Transplant
It's been a long time since I last posted on here! 10 months ago I was lucky enough to receive donor cells from a 10/10 match. It's been a rollercoaster ride but looking back, I've been very lucky as it has been nowhere near as bad as I had read it could be. Yes there have been some challenges, felt
It's been a long time since I last posted on here! 10 months ago I was lucky enough to receive donor cells from a 10/10 match. It's been a rollercoaster ride but looking back, I've been very lucky as it has been nowhere near as bad as I had read it could be. Yes there have been some challenges, felt
KAS8
in
CLL Support
5 years ago
ED after Leukaemia (CML)
New to this. Anyone part of this group had Leukaemia and bone marrow transplant and suffered ED?
New to this. Anyone part of this group had Leukaemia and bone marrow transplant and suffered ED?
Cryptogamia
in
Erectile Dysfunction Support
5 years ago
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Transplant birthday/Mental Health Awareness Week/Lung Transplant Consultation
Today marks 15 years since my bone marrow transplant for leukaemia. Crazy to think so many years have gone by and a definite cause for celebration tonight with my Dad and wife - we're going for a curry. Been a lot of up and downs along the way not least the development of my PPFE which as you many of
Today marks 15 years since my bone marrow transplant for leukaemia. Crazy to think so many years have gone by and a definite cause for celebration tonight with my Dad and wife - we're going for a curry. Been a lot of up and downs along the way not least the development of my PPFE which as you many of
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
5 years ago
New started
Just started c25k this week. Never run in my life ( unless for an ice cream van ) . Just had all clear after stem cell transplant so decided to get fit and loose weight . Oh my god it’s hard , knees really hurt after yesterday , think I just run really badly not naturally like people I see , but determined
Just started c25k this week. Never run in my life ( unless for an ice cream van ) . Just had all clear after stem cell transplant so decided to get fit and loose weight . Oh my god it’s hard , knees really hurt after yesterday , think I just run really badly not naturally like people I see , but determined
Strugglingsurvivor
in
Couch to 5K
5 years ago
Bone Marrow Transplant Aftermath
The experimental bone marrow transplant for prostate cancer had no positive effects for me, as far as we can determine, but I keep getting new chronic side effects, which are likely explained by the bone marrow transplant. First it was loss of the ability for my body to regulate my temperature effectively
The experimental bone marrow transplant for prostate cancer had no positive effects for me, as far as we can determine, but I keep getting new chronic side effects, which are likely explained by the bone marrow transplant. First it was loss of the ability for my body to regulate my temperature effectively
Beauxman
in
Advanced Prostate Cancer
5 years ago
New test for mutations to calculate the profession of MF
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hidden
in
MPN Voice
5 years ago
Hello!
Hi everybody! I'm Dave from SW Michigan. I was diagnosed with HCC about 15 months ago. PVVT meant no surgery or transplant. Has a Y90 procedure done last July in Ann Arbor. It killed 75% of the largest tumor but there was 2 new tumors in my lungs on the last MRI so the Dr. put me on Nexavar. Been taking
Hi everybody! I'm Dave from SW Michigan. I was diagnosed with HCC about 15 months ago. PVVT meant no surgery or transplant. Has a Y90 procedure done last July in Ann Arbor. It killed 75% of the largest tumor but there was 2 new tumors in my lungs on the last MRI so the Dr. put me on Nexavar. Been taking
reddog88
Patient
in
Blue Faery Liver Cancer
5 years ago
CAR T versus Stem Cell transplant for Richter's
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
profrich
in
CLL Support
5 years ago
reduced intensity transplant
If your over 50 and need a stem cell transplant it most likely will be low intensity. It also goes by mini-transplant or RIC transplant. It is NOT a standard stem cell transplant. all your cells are not replaced. you keep most of your own blood cells and have donor cells added to fight your cancer cells
If your over 50 and need a stem cell transplant it most likely will be low intensity. It also goes by mini-transplant or RIC transplant. It is NOT a standard stem cell transplant. all your cells are not replaced. you keep most of your own blood cells and have donor cells added to fight your cancer cells
Hidden
in
CLL Support
6 years ago
Stem Cell Treatment
A little while ago I mentioned that liver transplants could one day become a thing of the past. Day by day the use stem cell treatment and research brings us closer to finding a cure for liver disease. HIV positive man in London becomes second person ever to be cleared of virus after stem cell transplant
A little while ago I mentioned that liver transplants could one day become a thing of the past. Day by day the use stem cell treatment and research brings us closer to finding a cure for liver disease. HIV positive man in London becomes second person ever to be cleared of virus after stem cell transplant
Hidden
in
British Liver Trust
6 years ago
Donating bone marrow to cure sickle cell anaemia
A bone marrow transplant is the only complete cure for treating sickle cell anaemia. This is a kind of treatment in which the patient’s bone marrow is changed to new healthy bone marrow. This is done either by collecting the patient’s own bone marrow or that of a donor. In the case of sickle cell disease
A bone marrow transplant is the only complete cure for treating sickle cell anaemia. This is a kind of treatment in which the patient’s bone marrow is changed to new healthy bone marrow. This is done either by collecting the patient’s own bone marrow or that of a donor. In the case of sickle cell disease
anjana_indheal
in
Living with Sickle Cell Disease
6 years ago
Love is : Valentines Day Together in Clinic. . 💘
It's been some time since I posted but I keep in touch with the posts. It's part of me moving on in my lengthy recovery. I know from what I see that there are many new Forum members since I was active and that's great because we know it's one of the best sources of information , support and help for
It's been some time since I posted but I keep in touch with the posts. It's part of me moving on in my lengthy recovery. I know from what I see that there are many new Forum members since I was active and that's great because we know it's one of the best sources of information , support and help for
JediReject
in
MPN Voice
6 years ago
Dad in ICU fighting pneumonia and is slow to wake up from induced coma
Hi everyone. I’m wondering if anyone has any encouragement for our situation. My dad is 78 but has always been extremely healthy - a marathon runner until his back stopped him from running and now he’s been an avid swimmer for years and has had no real medical issues. He had a stem cell transplant
Hi everyone. I’m wondering if anyone has any encouragement for our situation. My dad is 78 but has always been extremely healthy - a marathon runner until his back stopped him from running and now he’s been an avid swimmer for years and has had no real medical issues. He had a stem cell transplant
WhitneyS18
in
ICUsteps
6 years ago
Seeking people with experience of Stem Cell Transplant for Richter's - I have a decision to make!
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Buddhababy
in
CLL Support
6 years ago
Dyskeratosis Congentia
Hi Everyone, I am so pleased there is a link to connect all families who are suffering with this sad and devastating condition. My son was diagnosed back in 2011 just by having a routine blood test. Our world fell apart when we finally got the diagnosis that my son along with my daughter have such
Hi Everyone, I am so pleased there is a link to connect all families who are suffering with this sad and devastating condition. My son was diagnosed back in 2011 just by having a routine blood test. Our world fell apart when we finally got the diagnosis that my son along with my daughter have such
Hidden
in
DC Action
6 years ago
O-CHOP
Hi everyone. Back with an update. New diagnosis: Follicular B, Stage IV, Grade 2. (was Grade 1) Previous treatment was Rituxan and Bendamustine, remission, shingles and it's baaaaack. Has anyone had O-CHOP? Obinutuzunab, Cyclophosphamide, Doxorubicin, Vincristine. Am scheduled for infusion 1\29,30,31
Hi everyone. Back with an update. New diagnosis: Follicular B, Stage IV, Grade 2. (was Grade 1) Previous treatment was Rituxan and Bendamustine, remission, shingles and it's baaaaack. Has anyone had O-CHOP? Obinutuzunab, Cyclophosphamide, Doxorubicin, Vincristine. Am scheduled for infusion 1\29,30,31
kstan8
in
Non Hodgkin's Lymphoma Friends
6 years ago
Stem cell transplant appointment for post PV MF
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
tracey13
in
MPN Voice
6 years ago
Sickle Cell News
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
sicklecellnews
in
Sickle Cell Society
6 years ago
New in fight with ALD
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
MonaStoica
in
Leukodystrophy Support
6 years ago
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