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Mantle cell lymphoma (MCL)
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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
Episode 115: Cutting Edge Therapy: Cancer Cured After Years of Battling CLL | Brian Koffman
[i]“After years of battling CLL, Dr. Brian Koffman underwent an experimental immunotherapy (CAR-T) that has now left him without a single trace of malignancy detectable in his entire body. This week's @HiddenForcesPod is the story of that miraculous journey." [/i]https://hiddenforces.io/podcasts/brian-koffman-cll-cutting-edge-cancer-therapy
[i]“After years of battling CLL, Dr. Brian Koffman underwent an experimental immunotherapy (CAR-T) that has now left him without a single trace of malignancy detectable in his entire body. This week's @HiddenForcesPod is the story of that miraculous journey." [/i]https://hiddenforces.io/podcasts/brian-koffman-cll-cutting-edge-cancer-therapy
bkoffman
CLL CURE Hero
in
CLL Support
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
4 years ago
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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
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
Debulking Eliminates Need for Hospitalization Prior to Initiating Venetoclax Therapy in untreated CLL pts
This is a report of Phase 3 study NCT03406156. Due to the rapid induction of cell death caused by the targeted activity of venetoclax, some patients require inpatient monitoring for tumor lysis syndrome (TLS) at initiation of therapy. In the recent CLL14 study, 64% and 22% of venetoclax-treated patients
This is a report of Phase 3 study NCT03406156. Due to the rapid induction of cell death caused by the targeted activity of venetoclax, some patients require inpatient monitoring for tumor lysis syndrome (TLS) at initiation of therapy. In the recent CLL14 study, 64% and 22% of venetoclax-treated patients
Jm954
Administrator
in
CLL Support
5 years ago
B-PLL Lymphoma
Hi I have B-PLL lymphoma and because it is very similar to CLL I’m going to start Ibrutinib. Just wondering if anyone with lymphoma has been prescribed this drug?
Hi I have B-PLL lymphoma and because it is very similar to CLL I’m going to start Ibrutinib. Just wondering if anyone with lymphoma has been prescribed this drug?
Hidden
in
CLL Support
5 years ago
ASH 2019: A Clinical Trial of Cannabis As Targeted Therapy for Indolent Leukemic Lymphoma
"Conclusion : This study demonstrates that it is safe to administrate a single dose of Sativex to elderly patients with indolent B-cell lymphoma with regards to adverse events. We show that the cannabis compound quickly reduces lymphoma cell numbers in peripheral blood. There was no evidence of activation
"Conclusion : This study demonstrates that it is safe to administrate a single dose of Sativex to elderly patients with indolent B-cell lymphoma with regards to adverse events. We show that the cannabis compound quickly reduces lymphoma cell numbers in peripheral blood. There was no evidence of activation
avzuclav
in
CLL Support
5 years ago
Newbie
Hey CLLers, I found this website and looks like I found a new family. I'll soon turn 72. I was diagnosed for CLL in March of 2013. Did BR from October 2016 to February 2017. Currently symptom free and do monthly blood work and IGIV at oncologist. Dr. mentioned if I relapse we might try a pill. I assume
Hey CLLers, I found this website and looks like I found a new family. I'll soon turn 72. I was diagnosed for CLL in March of 2013. Did BR from October 2016 to February 2017. Currently symptom free and do monthly blood work and IGIV at oncologist. Dr. mentioned if I relapse we might try a pill. I assume
louie48
in
CLL Support
5 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
First line above at 69Y: Venetoclax vs Ibrutinib vs BR
Hello All, After consulting 3 of the best available doctors I could find all of the suggest different options and its up to us to chose. So far: 1) Venetoclax -they claim its the least side effects treatment (despite she does not have 17p deleton they say will be very effective) 2) Ibrutinib effective
Hello All, After consulting 3 of the best available doctors I could find all of the suggest different options and its up to us to chose. So far: 1) Venetoclax -they claim its the least side effects treatment (despite she does not have 17p deleton they say will be very effective) 2) Ibrutinib effective
paula_dae
in
CLL Support
5 years ago
Oxbryta Receives FDA Approval for Treating Sickle Cell Disease
On Monday, the U.S. Food and Drug Administration (FDA) announced accelerated approval of Oxbryta (voxelotor) for the treatment of sickle cell disease in patients aged 12 and above. “Oxbryta is the first approved treatment for sickle cell disease that directly inhibits the root cause of the disease,
On Monday, the U.S. Food and Drug Administration (FDA) announced accelerated approval of Oxbryta (voxelotor) for the treatment of sickle cell disease in patients aged 12 and above. “Oxbryta is the first approved treatment for sickle cell disease that directly inhibits the root cause of the disease,
RobertReny
in
Sickle Cell Society
5 years ago
Temporal Ultrasound May Be Useful in Giant Cell Arteritis Disease Monitoring (in patients paring corticosteroids with tocilizumab)
Thought this was an interesting article... wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with tocilizumab. The more tracking/monitoring, the more data... the more data,
Thought this was an interesting article... wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with tocilizumab. The more tracking/monitoring, the more data... the more data,
Hidden
in
PMRGCAuk
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
Help with a mystery needed
In August I went went to a neurologist who tested my b12 levels because of neurological symptoms. I requested the test because in 2012 when I was trying to get pregnant a naturopathic dr found that my b12 levels were 350... at the time I had no symptoms. I remember her talking about intrinsic factor
In August I went went to a neurologist who tested my b12 levels because of neurological symptoms. I requested the test because in 2012 when I was trying to get pregnant a naturopathic dr found that my b12 levels were 350... at the time I had no symptoms. I remember her talking about intrinsic factor
CW12
in
Pernicious Anaemia Society
5 years ago
Started Trial today
It was kind of a rough start. I got as far as 3.9 ml in on the O drip and I felt like I was burning from the inside out. I have been flushed before but this was 100 times worse. My vitals went south and everyone came running. They stopped the infusion and up the dosage of steroids, benedryl etc.
It was kind of a rough start. I got as far as 3.9 ml in on the O drip and I felt like I was burning from the inside out. I have been flushed before but this was 100 times worse. My vitals went south and everyone came running. They stopped the infusion and up the dosage of steroids, benedryl etc.
aquafinn
in
CLL Support
5 years ago
Can mild incline in potassium levels after b12 inj therapy explain heart palpitation and anxiety?
I'm probably deficient in b12 as I have many of the relevant symptoms (including neurological) so I started b12 injection therapy in the advice of my Doctor. I'm using cianocoblamin 1000 mcg injection each alternate day. I'm also mildly deficient with Iron so I take the Solgar "Gentle Iron" - 25mg byglicinate
I'm probably deficient in b12 as I have many of the relevant symptoms (including neurological) so I started b12 injection therapy in the advice of my Doctor. I'm using cianocoblamin 1000 mcg injection each alternate day. I'm also mildly deficient with Iron so I take the Solgar "Gentle Iron" - 25mg byglicinate
Shajarin
in
Pernicious Anaemia Society
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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