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Mantle cell lymphoma (MCL)
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Fantastic Book for PMR and GCA
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
Andymegv
in
PMRGCAuk
1 year ago
Can Divine Intervention Change Your Genotype?
Reports of sickle cell cures/genotype change by divine intervention have become too many to ignore. _SICKLE CELL NEWS_ ventured to investigate: and it turned out easier to pass a camel through the eye of a needle than find anyone cured of sickle cell by Faith! https://selar.co/lor8 We interviewed
Reports of sickle cell cures/genotype change by divine intervention have become too many to ignore. _SICKLE CELL NEWS_ ventured to investigate: and it turned out easier to pass a camel through the eye of a needle than find anyone cured of sickle cell by Faith! https://selar.co/lor8 We interviewed
sicklecellnews
in
Sickle Cell Society
1 year ago
Steroid sparing agents
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Janeval
in
PMRGCAuk
1 year ago
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Am Iwell?
I have my bi-monthly consultant review next week, which always starts with the question, well how are you? My usual reaction, is that perhaps you should tell me! I have just got the results (After 1 hour) of my latest blood test but I'm not sure which questions to ask. I started treatment with 6xRituximab
I have my bi-monthly consultant review next week, which always starts with the question, well how are you? My usual reaction, is that perhaps you should tell me! I have just got the results (After 1 hour) of my latest blood test but I'm not sure which questions to ask. I started treatment with 6xRituximab
Dawson21
in
CLL Support
1 year ago
Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
PhysAssist
in
MPN Voice
1 year ago
He’s home! Hurrah!
After 7 weeks in hospital my husband is home. Initially they were treating him for an infection and no antibiotics were touching it. It was only when they got the bone marrow culture showing Hodgkins transformation that he turned a corner. The ABVD chemo was a game changer. He had two chemos in hospital
After 7 weeks in hospital my husband is home. Initially they were treating him for an infection and no antibiotics were touching it. It was only when they got the bone marrow culture showing Hodgkins transformation that he turned a corner. The ABVD chemo was a game changer. He had two chemos in hospital
Fowey2009
in
CLL Support
1 year ago
Getting older with ss
I'm in my 40's now and I have fewer pain crisis then I had when I was younger. You'd think things would get easier because of this but it isn't. Now I'm dealing with a lot of health problems that sickle cell caused or exacerbated. Like heart problems (which I take meds for), a bad hip (which I had replaced
I'm in my 40's now and I have fewer pain crisis then I had when I was younger. You'd think things would get easier because of this but it isn't. Now I'm dealing with a lot of health problems that sickle cell caused or exacerbated. Like heart problems (which I take meds for), a bad hip (which I had replaced
SociallyUrban
in
Sickle Cell Society
1 year ago
Allopurinol with V &O treatment for CLL
Has ànyone taken Allopurinol to prevent tumor lysis with Gazyva and Venclexta treatment? How long did you take it and has anyone had an allergic reaction to it?
Has ànyone taken Allopurinol to prevent tumor lysis with Gazyva and Venclexta treatment? How long did you take it and has anyone had an allergic reaction to it?
Gradyboy
in
CLL Support
1 year ago
Bone marrow transplant possibility and leriglitazone update
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
JShough
in
AMN EASIER
1 year ago
‘World's 1st' fetal brain stem cell transplant effective in Parkinson's disease: study
CHA University Bundang Medical Center (CBMC) said on Monday that its researchers proved the safety and effectiveness of dopamine neural precursor cells derived from fetal mesenchymal stem cells transplanted into patients with Parkinson's disease "for the first time in the world." Cell replacement therapy
CHA University Bundang Medical Center (CBMC) said on Monday that its researchers proved the safety and effectiveness of dopamine neural precursor cells derived from fetal mesenchymal stem cells transplanted into patients with Parkinson's disease "for the first time in the world." Cell replacement therapy
Baron1
in
Cure Parkinson's
1 year ago
My MD Anderson doctor is leaving
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
Lisa-1959
in
CLL Support
2 years ago
Starting treatment
Hello everyone, I've been on W&W Since Jan 2020. Two weeks ago at my consultation my consultant said its time for treatment, that week I had a CT scan, blood tests and an echo heart test. My next step I assumed would be a meeting regarding my treatment, however she called today to say I need a pet
Hello everyone, I've been on W&W Since Jan 2020. Two weeks ago at my consultation my consultant said its time for treatment, that week I had a CT scan, blood tests and an echo heart test. My next step I assumed would be a meeting regarding my treatment, however she called today to say I need a pet
mfc86
in
CLL Support
2 years ago
Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica - a very useful reference to show your doctor
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
PMRpro
Ambassador
in
PMRGCAuk
1 year ago
parietal cell antibody lab results
I’m having trouble interpreting my lab results. My Parietal Cell Antibody IgG value is 33.2 units and it said the standard range is 0.0-24.9 units. So it’s above the standard range but not by much. Apparently above 25 units is positive so that means I’m positive? I just want to confirm.
I’m having trouble interpreting my lab results. My Parietal Cell Antibody IgG value is 33.2 units and it said the standard range is 0.0-24.9 units. So it’s above the standard range but not by much. Apparently above 25 units is positive so that means I’m positive? I just want to confirm.
Purplegirl2
in
Pernicious Anaemia Society
1 year ago
Internet censorship?
Internet censorship of medical information? As I mentioned before, I had anaphylactic shock during first infusion with obinutuzumab, which does not appear to be uncommon. There was a man across from me in my last infusion group who had same reaction. Quick witted infusion nurse jabbed me with EpiPen
Internet censorship of medical information? As I mentioned before, I had anaphylactic shock during first infusion with obinutuzumab, which does not appear to be uncommon. There was a man across from me in my last infusion group who had same reaction. Quick witted infusion nurse jabbed me with EpiPen
Big_Dee
in
CLL Support
2 years ago
Iron test results - advice please
CRP HS X 6.45 mg/L (Range: 0 - 5) - I believe this was high because of infection, as I went down with a temperature the following day. Iron 10.0 umol/L (Range: 5.8 - 34.5) - down from 18.4 six months ago TIBC 43.2 umol/L (Range: 45 - 81) - down from 46.3 six months ago UIBC 33.2 umol/L (Range: 24.2
CRP HS X 6.45 mg/L (Range: 0 - 5) - I believe this was high because of infection, as I went down with a temperature the following day. Iron 10.0 umol/L (Range: 5.8 - 34.5) - down from 18.4 six months ago TIBC 43.2 umol/L (Range: 45 - 81) - down from 46.3 six months ago UIBC 33.2 umol/L (Range: 24.2
Molly161018
in
Thyroid UK
1 year ago
Advice on test results please
Hello there I would be glad if some advice on my latest test results please: CRP HS X 6.23 mg/L (0 - 5) - this is high, but I came down with a temperature and sore throat the following day, so I'm guessing it's probably due to fighting illness rather than autoimmunity. Ferritin 94.9 ug/L (13 - 150)
Hello there I would be glad if some advice on my latest test results please: CRP HS X 6.23 mg/L (0 - 5) - this is high, but I came down with a temperature and sore throat the following day, so I'm guessing it's probably due to fighting illness rather than autoimmunity. Ferritin 94.9 ug/L (13 - 150)
Molly161018
in
Thyroid UK
1 year ago
Travel insurance within the UK.
I'm travelling from Essex to Belfast next month and am looking for travel insurance. With belfast being in the UK I wonder if I actually need cover anyway. I am over 200 days post stem cell transplant and it will be my first time travelling abroad as such since the start of covid in 2020. I am considering
I'm travelling from Essex to Belfast next month and am looking for travel insurance. With belfast being in the UK I wonder if I actually need cover anyway. I am over 200 days post stem cell transplant and it will be my first time travelling abroad as such since the start of covid in 2020. I am considering
Kraskie1915
in
CLL Support
1 year ago
test interpretation
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
DianeSH
in
CLL Support
2 years ago
All good things must come to an end
I just had my 3 month checkup and it looks like my Ibrutinib is starting to stop keeping my counts in check. They have not gone crazy but have been slowing rising this past year and actually doubled over a 6 month period. My Doctor thinks it's probably good to look at another treatment while I am still
I just had my 3 month checkup and it looks like my Ibrutinib is starting to stop keeping my counts in check. They have not gone crazy but have been slowing rising this past year and actually doubled over a 6 month period. My Doctor thinks it's probably good to look at another treatment while I am still
rcusher
in
CLL Support
2 years ago
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