Search
Search
About
Log in
Join
Experiences with
Mantle cell lymphoma (MCL)
Posts
Communities
1,647 public posts
Filter results
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
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
4 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
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
4 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
4 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
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
4 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
4 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
4 years ago
Can Iron Supplement cause rapid heart beat 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
4 years ago
The Winter issue of Leukaemia Matters will soon be landing at your door or in your inbox!
[i]Hello,[/i] [i]Welcome to the Winter issue of our magazine![/i] http://bit.ly/LeukaemiaMattersWinter2019 [i]It’s been another busy year for Leukaemia Care as we celebrated our [/i][i]50th anniversary. We spent much of the year working harder than ever to [/i][i]provide support and advice to those
[i]Hello,[/i] [i]Welcome to the Winter issue of our magazine![/i] http://bit.ly/LeukaemiaMattersWinter2019 [i]It’s been another busy year for Leukaemia Care as we celebrated our [/i][i]50th anniversary. We spent much of the year working harder than ever to [/i][i]provide support and advice to those
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
4 years ago
Headache and GCA
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173245/ The article is entitled
Giant cell arteritis or tension-type headache?: A differential diagnostic dilemma
and details the presentation of an elderly lady who appeared to have a tension headache - but it was in fact GCA. It is probably a reference
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173245/ The article is entitled
Giant cell arteritis or tension-type headache?: A differential diagnostic dilemma
and details the presentation of an elderly lady who appeared to have a tension headache - but it was in fact GCA. It is probably a reference
LilyBark
in
PMRGCAuk
4 years ago
Follicular Lymphoma Patient: 8-Year Treatment Experience
In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 4 years, she progressed after R-CHOP (6 cycles), bendamustine/rituximab
In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 4 years, she progressed after R-CHOP (6 cycles), bendamustine/rituximab
wmay13241
in
Non Hodgkin's Lymphoma Friends
5 years ago
Lung Illnesses Associated with Use of Vaping Products. FDA Warns Public to stop using those containing Tetrahydrocannabinol (THC)
Those of us wanting to quit smoking and using e-cigarettes to achieve this, or anyone vaping cannabinoids including THC (the psychoactive cannabinoid) need to be aware of recent concerns regarding their safety. [i]Both the U.S. Food and Drug Administration and the U.S. Centers for Disease Control and
Those of us wanting to quit smoking and using e-cigarettes to achieve this, or anyone vaping cannabinoids including THC (the psychoactive cannabinoid) need to be aware of recent concerns regarding their safety. [i]Both the U.S. Food and Drug Administration and the U.S. Centers for Disease Control and
AussieNeil
Administrator
in
CLL Support
5 years ago
DA-EPOCH-R treatments
I was diagnosed with diffuse large cell B lymphoma in Sept. immediately hospitalized for DA-EPOCH-R 24 hour treatments. A real shock to me as I envisioned a day in the infusion center every 3 weeks. Made it thru 2 sessions and headed back next week for another week tethered to my chemo pole 😊. Anyone
I was diagnosed with diffuse large cell B lymphoma in Sept. immediately hospitalized for DA-EPOCH-R 24 hour treatments. A real shock to me as I envisioned a day in the infusion center every 3 weeks. Made it thru 2 sessions and headed back next week for another week tethered to my chemo pole 😊. Anyone
Msmerryc
in
CLL Support
5 years ago
Molybdenum
Hi, I was recently diagnosed as extremely deficient in B12, extremely high MMA and homecysteine. (highest MMA he has on record) The bio-chemist I am working with (lifelong research with B12 and B vitamins in general) insists that I need to get Molybdenum on board before effectively supplementing with
Hi, I was recently diagnosed as extremely deficient in B12, extremely high MMA and homecysteine. (highest MMA he has on record) The bio-chemist I am working with (lifelong research with B12 and B vitamins in general) insists that I need to get Molybdenum on board before effectively supplementing with
EiCa
in
Pernicious Anaemia Society
5 years ago
Gp review after b12 stopped
Hello 👋 I need some advice please. My gp practice carried out a generic review of b12 patients back in July and they decided I could no longer have b12 injections I was started on them in 2009 as I had neuro symptoms and chronic fatigue and after repeated visits to my gp I was finally advised my b12
Hello 👋 I need some advice please. My gp practice carried out a generic review of b12 patients back in July and they decided I could no longer have b12 injections I was started on them in 2009 as I had neuro symptoms and chronic fatigue and after repeated visits to my gp I was finally advised my b12
Twinklesthecat
in
Pernicious Anaemia Society
4 years ago
Vecabrutinib clinical trial?
Does anyone have any experience on the vecabrutinib clinical trial from a company called sunesis? I believe it is being developed for those who are or have become resistant to ibrutinib for cll and other B cell cancers.
Does anyone have any experience on the vecabrutinib clinical trial from a company called sunesis? I believe it is being developed for those who are or have become resistant to ibrutinib for cll and other B cell cancers.
Asclepiusone
in
CLL Support
5 years ago
My search for the perfect anti lymphoma diet
I had been diagnosed with
Mantle
cell
lymphoma
in July 2015 and had R Chop and a stem cell transplant. One year ago I had just started a gluten free and dairy free diet and I felt great.
I had been diagnosed with
Mantle
cell
lymphoma
in July 2015 and had R Chop and a stem cell transplant. One year ago I had just started a gluten free and dairy free diet and I felt great.
Maltipoo
in
Non Hodgkin's Lymphoma Friends
5 years ago
Accelerated Dental Decay
Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP, intrathecal methraxoate)? Is this likely to be an effect of the cancer; a direct effect of the chemo; a side effect or the result of a compromised immune system?
Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP, intrathecal methraxoate)? Is this likely to be an effect of the cancer; a direct effect of the chemo; a side effect or the result of a compromised immune system?
MaitreD
in
CLL Support
5 years ago
1
...
28
29
30
...
83
Next page
10
20
30
40
50
60
70
80
Filter results
Clear filters
Posted in
All communities
CLL Support
542 results
PMRGCAuk
194 results
MPN Voice
125 results
View top 10 communities
Sort by
Most Relevant
Newest