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Cutaneous T cell lymphoma (CTCL)
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“I had no immune system for months after my bone marrow transplant. Here’s how I avoided viral illness, and how you can, too.
“I had no immune system for months after my bone marrow transplant. Here’s how I avoided viral illness, and how you can, too. It’s easier than you think.” A.M. Carter Mar 22 · 12 min read https://medium.com/@amcarter/i-had-no-immune-system-for-months-after-my-bone-marrow-transplant-1b097f16040c
“I had no immune system for months after my bone marrow transplant. Here’s how I avoided viral illness, and how you can, too. It’s easier than you think.” A.M. Carter Mar 22 · 12 min read https://medium.com/@amcarter/i-had-no-immune-system-for-months-after-my-bone-marrow-transplant-1b097f16040c
hsouter
in
CLL Support
4 years ago
In extremely vulnerable group but don't understand why
On Monday I got a text, followed by a letter, informing me that I have been identified as someone at risk of severe illness and thereby extremely vulnerable if I were to catch coronavirus. Instructions are not to leave home, even for food and meds, and stay away from others indoors. There is a list of
On Monday I got a text, followed by a letter, informing me that I have been identified as someone at risk of severe illness and thereby extremely vulnerable if I were to catch coronavirus. Instructions are not to leave home, even for food and meds, and stay away from others indoors. There is a list of
Hidden
in
British Heart Foundation
4 years ago
Change in blood results
HELLO MEMBERS OF CLL FORUM, I'm on IB now for a little over 2 month, and seeing my numbers are getting slightly better ......... except Platelet count still L 89 , should be 150-400 and Neutrophils 1.5, should be 2.0-8.0. Monocytes 0.0, should be 0.2-1.0 Do we have anyone who could give advice? Seeing
HELLO MEMBERS OF CLL FORUM, I'm on IB now for a little over 2 month, and seeing my numbers are getting slightly better ......... except Platelet count still L 89 , should be 150-400 and Neutrophils 1.5, should be 2.0-8.0. Monocytes 0.0, should be 0.2-1.0 Do we have anyone who could give advice? Seeing
Traudel
in
CLL Support
4 years ago
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Confused /scared about Covid 19
Hi there I’m guessing that a lot of people are in the same boat about Covid19. My husband recently underwent a stem cell transplant for ALL and is now taking immunosuppressant medication. I currently work part time in the retail sector and I’m really confused and anxious about what to do for the best
Hi there I’m guessing that a lot of people are in the same boat about Covid19. My husband recently underwent a stem cell transplant for ALL and is now taking immunosuppressant medication. I currently work part time in the retail sector and I’m really confused and anxious about what to do for the best
Clarence45
in
Leukaemia Support
4 years ago
FISH Results
I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia (CLL/SLL).” Can
I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia (CLL/SLL).” Can
DylanPxxx
in
CLL Support
4 years ago
Government Advice on Coronavirus
In a nutshell...keep smiling. Government Advice in the UK as at 12th March 2020 · All people with flu-like symptoms – a fever above 37.8C or a persistent cough- should stay at home, away from other people, for seven days. · Schools should not take trips abroad. · Older people
In a nutshell...keep smiling. Government Advice in the UK as at 12th March 2020 · All people with flu-like symptoms – a fever above 37.8C or a persistent cough- should stay at home, away from other people, for seven days. · Schools should not take trips abroad. · Older people
Kevin53
in
LUPUS UK
4 years ago
Exceptional Response to Pembrolizumab in a Patient With Castration-Resistant Prostate Cancer With Pancytopenia From Myelophthisis: A Case Re
Praying this may be the answer for my husband who was just told 2 days ago that there's nothing to do, since his marrow isn't working after his 4th Xofigo treatment (see earlier posts below)!! https://www.medpagetoday.com/reading-room/asco/immunotherapy/80009 Exceptional Response to Pembrolizumab in
Praying this may be the answer for my husband who was just told 2 days ago that there's nothing to do, since his marrow isn't working after his 4th Xofigo treatment (see earlier posts below)!! https://www.medpagetoday.com/reading-room/asco/immunotherapy/80009 Exceptional Response to Pembrolizumab in
JLS1
in
Advanced Prostate Cancer
4 years ago
FISH Results
FISH Results: I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia
FISH Results: I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia
DylanPxxx
in
Non Hodgkin's Lymphoma Friends
4 years ago
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
MRD Testing after treatment. Help!
Is this good? Have to wait until tomorrow to actually speak to someone. Peripheral blood, flow cytometric immunophenotyping: Normal immunophenotyping results. No monotypic B-cell population identified. Comment: Minimal residual disease (MRD) analysis is intended to detect small clonal populations of
Is this good? Have to wait until tomorrow to actually speak to someone. Peripheral blood, flow cytometric immunophenotyping: Normal immunophenotyping results. No monotypic B-cell population identified. Comment: Minimal residual disease (MRD) analysis is intended to detect small clonal populations of
AuntHelen
in
CLL Support
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
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
Remission
So the PETSCAN and the bone marrow biopsy say no leukemia or lymphoma for me. That means total remission but they still want me to have a transplant waiting for an appointment from MD Anderson in Texas.
So the PETSCAN and the bone marrow biopsy say no leukemia or lymphoma for me. That means total remission but they still want me to have a transplant waiting for an appointment from MD Anderson in Texas.
SwiftT
in
CLL Support
4 years ago
Small B cell lymphoma
Hi. My tests still not confirmed but suggestive of small B cell lymphoma. Does anyone know much about this and prognosis treatment ect.
Hi. My tests still not confirmed but suggestive of small B cell lymphoma. Does anyone know much about this and prognosis treatment ect.
Jenny2020
in
CLL Support
4 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
Immunotherapy and Gene Modification of T Cells
I'm diagnosed as of April 2018, and like so many others in the Watch and Wait phase. I hate this approach, but I understand why it is taken. In essence the current treatments available are as dangerous as the disease, so the doctors wait until the enemy is deep in your territory. Sort of waiting until
I'm diagnosed as of April 2018, and like so many others in the Watch and Wait phase. I hate this approach, but I understand why it is taken. In essence the current treatments available are as dangerous as the disease, so the doctors wait until the enemy is deep in your territory. Sort of waiting until
wizzard166
in
CLL Support
4 years ago
NEW TREATMENT: RITUXIMAB AND BENDAMUSTINE
Hello, After Ibrutinib stopped working for my partner, he will now be embarking on a new treatment. Rituximab and Bendamustine chemotherapy combination. Has anybody had any experience using these drugs together? Many thanks,
Hello, After Ibrutinib stopped working for my partner, he will now be embarking on a new treatment. Rituximab and Bendamustine chemotherapy combination. Has anybody had any experience using these drugs together? Many thanks,
pollyg2016
in
Non Hodgkin's Lymphoma Friends
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
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
4 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
4 years ago
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