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An Early Look at When CAR-T Therapy Fails Patients With CLL
Not exactly an optimistic report. Dr James Gerson, MD, - "Not a lot is known as to what happens in the patients for whom CAR-T therapy does not work,” “Anecdotally, we say that patients often progress rapidly and aren’t able to get further therapies, but it’s not something there’s a lot of data for.
Not exactly an optimistic report. Dr James Gerson, MD, - "Not a lot is known as to what happens in the patients for whom CAR-T therapy does not work,” “Anecdotally, we say that patients often progress rapidly and aren’t able to get further therapies, but it’s not something there’s a lot of data for.
Jm954
Administrator
in
CLL Support
4 years ago
Sickle cell and endometriosis
Hi, I have been recently diagnosed with endometriosis and I have been slightly worried.... is there anyone in here that has sickle cell and endometriosis.... I have sickle cell trait from both of my parents. Thank you in advance for your answers and time.
Hi, I have been recently diagnosed with endometriosis and I have been slightly worried.... is there anyone in here that has sickle cell and endometriosis.... I have sickle cell trait from both of my parents. Thank you in advance for your answers and time.
Gabyp
in
Sickle Cell Society
4 years ago
Options other than transplant?
Hi, I'm new to the forum and was wondering if anybody has chosen not to go for stem cell transplant after getting good bone marrow results after the consolidation phase of chemo? I'm also struggling to find other people who have been diagnosed with A.L.L. in their 50s like me as it seems to usually bea
Hi, I'm new to the forum and was wondering if anybody has chosen not to go for stem cell transplant after getting good bone marrow results after the consolidation phase of chemo? I'm also struggling to find other people who have been diagnosed with A.L.L. in their 50s like me as it seems to usually bea
Gemini1967
in
Leukaemia Support
4 years ago
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Blurred vision - alternatives to Tocilizumab
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
Skinnyjonny
in
PMRGCAuk
4 years ago
Ppfe
Last week my daughter was confirmed as having ppfe. She had a bone marrow transplant 11 yrs ago as she had acute lymphoblastic leukaemia. Is there anyone out there in the same situation?
Last week my daughter was confirmed as having ppfe. She had a bone marrow transplant 11 yrs ago as she had acute lymphoblastic leukaemia. Is there anyone out there in the same situation?
Kcn3
in
Lung Conditions Community Forum
4 years ago
How important is it to have full time care taker when recovering from bone marrow transplant
I have to have bone marrow transplant. Problem is i live in New England. My family is out west(Seattle) , i only have my ex wife and 16 y.o son near me so i don't have anyone to help take care of me. Suggestions,
I have to have bone marrow transplant. Problem is i live in New England. My family is out west(Seattle) , i only have my ex wife and 16 y.o son near me so i don't have anyone to help take care of me. Suggestions,
hossbball
in
CLL Support
4 years ago
Richter Transformation Testimonials. Survivors
Hi. As some of you will know, last week I formed a Facebook group to try to locate all possible Ricther and tell us your case. With your permission, I want to share keeping your story anonymous. For anyone who wants to locate them, just contact the Facebook group. In this group, everyone identifies with
Hi. As some of you will know, last week I formed a Facebook group to try to locate all possible Ricther and tell us your case. With your permission, I want to share keeping your story anonymous. For anyone who wants to locate them, just contact the Facebook group. In this group, everyone identifies with
Priss69
in
CLL Support
4 years ago
I have to withhold my tocilizumab
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
Teekay2
in
PMRGCAuk
4 years ago
After 4th Xofigo injection, bone marrow 'crashed'? - Cancer or side effect from Xofigo?? Next step??
My husband seemed to be responding to the monthly Xofigo injections until the 4th one on Dec 5th, which caused his blood numbers to crash. He ended up in the ER 2 weeks later, on Dec 20th, with hemoglobin around 6, so they gave him 3 red blood cell transfusions which brought him up to 8.4. (we were
My husband seemed to be responding to the monthly Xofigo injections until the 4th one on Dec 5th, which caused his blood numbers to crash. He ended up in the ER 2 weeks later, on Dec 20th, with hemoglobin around 6, so they gave him 3 red blood cell transfusions which brought him up to 8.4. (we were
JLS1
in
Advanced Prostate Cancer
5 years ago
Follow-up...and perhaps hope for us all
Last month I posted about my son's sudden leukemia diagnosis (see below). Although he was not well enough to make it to MD Anderson as planned in December, he did get there this week. It was anticipated that their recommendation would be either stay the course with the intense chemo that he was in the
Last month I posted about my son's sudden leukemia diagnosis (see below). Although he was not well enough to make it to MD Anderson as planned in December, he did get there this week. It was anticipated that their recommendation would be either stay the course with the intense chemo that he was in the
shueswim
in
Advanced Prostate Cancer
5 years ago
Do I self treat now?
Hello - long post ahead. I posted here last year, prior to seeing a neurologist as I was (and still am having) neuro symptoms: occasional tremor in hands, constant pins and needles in hands and feet, numbness (hands mostly). I have Hashimotos Thyroiditis and psoriasis. I was diagnosed as B12 deficient
Hello - long post ahead. I posted here last year, prior to seeing a neurologist as I was (and still am having) neuro symptoms: occasional tremor in hands, constant pins and needles in hands and feet, numbness (hands mostly). I have Hashimotos Thyroiditis and psoriasis. I was diagnosed as B12 deficient
Hidden
in
Pernicious Anaemia Society
4 years ago
Sickle Cell Trait and menstrual cycle
For years I suffered from fainting and blackouts right before or during my periods. I recently met another woman who had a similar experience and she mentioned that it was because she has the sickle cell trait. I am wondering if this has happened to anyone else?
For years I suffered from fainting and blackouts right before or during my periods. I recently met another woman who had a similar experience and she mentioned that it was because she has the sickle cell trait. I am wondering if this has happened to anyone else?
MsLady0
in
Sickle Cell Society
5 years ago
Where can I buy Vitamin B complex for intramuscular injections
Hi, just wanting some advise please. I was ill whilst in South Africa last year and was given Vitamin B complex injections as part of my wellness plan. I was given the bottle with the remaining doses to bring back to the UK. I have been getting this injected regularly from a pharmacist thats qualified
Hi, just wanting some advise please. I was ill whilst in South Africa last year and was given Vitamin B complex injections as part of my wellness plan. I was given the bottle with the remaining doses to bring back to the UK. I have been getting this injected regularly from a pharmacist thats qualified
Volta
in
Pernicious Anaemia Society
5 years ago
Urea and Electrolytes
Serum Sodium range 133 - 146 Can I have some help please? In the last 5months my reading has been <133. What can I do to try to get it within the range?
Serum Sodium range 133 - 146 Can I have some help please? In the last 5months my reading has been <133. What can I do to try to get it within the range?
prunus
in
PMRGCAuk
4 years ago
Update and Best Wishes
Have just got out of hospital after three days of methylprednisolone infusions. The idea was to bring me into hospital and give me a boost so I could go on a holiday. Just as well I went in because it coincided with a fairly bad attack, so hopefully I’ll be OK now for a month or so. Mid February
Have just got out of hospital after three days of methylprednisolone infusions. The idea was to bring me into hospital and give me a boost so I could go on a holiday. Just as well I went in because it coincided with a fairly bad attack, so hopefully I’ll be OK now for a month or so. Mid February
lesleyg
in
Behçet's UK
5 years ago
Any Experience with Tocilizumab and GCA?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
Brofort
in
PMRGCAuk
5 years ago
Thrombocytosis
Hi everyone here I am glad to be a member of this MPN Voice I really like to hear others too suffering from this blood disease thrombocytosis I have high platelets count.And I would like to hear other patients who has this kind of disorder since this is a rare blood disease.
Hi everyone here I am glad to be a member of this MPN Voice I really like to hear others too suffering from this blood disease thrombocytosis I have high platelets count.And I would like to hear other patients who has this kind of disorder since this is a rare blood disease.
grgracey
in
MPN Voice
5 years ago
Functional doctor checking everything!
I posted here before about my suspected low B12 and my experience with my unsympathetic GP. I visited my consultant who was also not interested in listening to me. In fact he was taking blood while I was telling him I was sure I was low in B12 again and he didn't bother to even check it even though I
I posted here before about my suspected low B12 and my experience with my unsympathetic GP. I visited my consultant who was also not interested in listening to me. In fact he was taking blood while I was telling him I was sure I was low in B12 again and he didn't bother to even check it even though I
MariaMe
in
Pernicious Anaemia Society
5 years ago
Bone marrow transplant number 2
BONE MARROW TRANS PLANT PART TWO! So its a go At MSGH to receiver a bone marrow transplant early this January! Thank god my sister is a match and we are a go a. A scary go at that. Meaning all that is involved with procedure! I am having this pro procedure done 2000 miles away from home base. So this
BONE MARROW TRANS PLANT PART TWO! So its a go At MSGH to receiver a bone marrow transplant early this January! Thank god my sister is a match and we are a go a. A scary go at that. Meaning all that is involved with procedure! I am having this pro procedure done 2000 miles away from home base. So this
Seifert_09
in
AMN EASIER
5 years ago
A cautionary tale
A cautionary tale for those of us who have used or are using opiates for pain. I have several autoimmune diseases. I’ve survived leukemia with two bone marrow transplants. I have latent effects from the chemo that manifest themselves in all kinds of ways. I have herniated discs at C5-C6 and L5-
A cautionary tale for those of us who have used or are using opiates for pain. I have several autoimmune diseases. I’ve survived leukemia with two bone marrow transplants. I have latent effects from the chemo that manifest themselves in all kinds of ways. I have herniated discs at C5-C6 and L5-
Nitrobunny
in
PMRGCAuk
5 years ago
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