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Experiences with
Cutaneous T cell lymphoma (CTCL)
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Seeking people with experience of Stem Cell Transplant for Richter's - I have a decision to make!
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Buddhababy
in
CLL Support
6 years ago
Starting Bendamustine tomorrow
Hi there! I’m a bit anxious about what’s to come - just dx w Stage 3a Follicular NHL. I had Rituxan 2 days ago and it went pretty well. What can I expect as I start the chemo? I’ve read up on all of the possibilities but thought I should ask some real warriors! Thanks so much 🙏🏼
Hi there! I’m a bit anxious about what’s to come - just dx w Stage 3a Follicular NHL. I had Rituxan 2 days ago and it went pretty well. What can I expect as I start the chemo? I’ve read up on all of the possibilities but thought I should ask some real warriors! Thanks so much 🙏🏼
Finschick
in
CLL Support
6 years ago
Private B12 injections in London please?
Hello, Does anyone know of a private GP in the London area or Kent who will give B12 injections please? I have had my loading dose of 6 just over 2 weeks ago, some symptoms went away but dizzyness and strange tiredness after walking for more 10 minutes were still there. I told this to my GP. But now
Hello, Does anyone know of a private GP in the London area or Kent who will give B12 injections please? I have had my loading dose of 6 just over 2 weeks ago, some symptoms went away but dizzyness and strange tiredness after walking for more 10 minutes were still there. I told this to my GP. But now
GastritisB12
in
Pernicious Anaemia Society
6 years ago
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Cutaneous Vasculitis
Hi all Back in early 2015 I had the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who suggested treating the whole family for Scabies. After many tests and appointments later and biopsies they confirmed Cutaneous Vasculitis. Back in 2018 from July to December
Hi all Back in early 2015 I had the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who suggested treating the whole family for Scabies. After many tests and appointments later and biopsies they confirmed Cutaneous Vasculitis. Back in 2018 from July to December
lou1972
in
Vasculitis UK
6 years ago
Dyskeratosis Congentia
Hi Everyone, I am so pleased there is a link to connect all families who are suffering with this sad and devastating condition. My son was diagnosed back in 2011 just by having a routine blood test. Our world fell apart when we finally got the diagnosis that my son along with my daughter have such
Hi Everyone, I am so pleased there is a link to connect all families who are suffering with this sad and devastating condition. My son was diagnosed back in 2011 just by having a routine blood test. Our world fell apart when we finally got the diagnosis that my son along with my daughter have such
Hidden
in
DC Action
6 years ago
Job interview - dealing with embarrassing sweats
Hi everyone My tapering journey has been going well and the side effects of the steroids and the withdrawal on each reduction are becoming much less and bearable EXCEPT I suffer from red hot flushes to the face and terrible head sweats. I have noticed that these occur spontaneously but they are definitely
Hi everyone My tapering journey has been going well and the side effects of the steroids and the withdrawal on each reduction are becoming much less and bearable EXCEPT I suffer from red hot flushes to the face and terrible head sweats. I have noticed that these occur spontaneously but they are definitely
EscapedtoWales
in
PMRGCAuk
6 years ago
Follicular Lymphoma
Hello, I was diagnosed with Follicular Lymphoma in February. I’ve already had 4 sessions of RITUXAMAB. The doctors are happy that most cancer cells are gone but it’s incurable as there are dormant cells still in me. I’m interested to hear about other people’s stories, your diet, lifestyle changes etc
Hello, I was diagnosed with Follicular Lymphoma in February. I’ve already had 4 sessions of RITUXAMAB. The doctors are happy that most cancer cells are gone but it’s incurable as there are dormant cells still in me. I’m interested to hear about other people’s stories, your diet, lifestyle changes etc
CraigWilson
in
Lymphoma Canada
6 years ago
Sickle Cell News
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
sicklecellnews
in
Sickle Cell Society
6 years ago
Stem cell transplant appointment for post PV MF
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option. So for now he's going to take ruxlitnib for as long as he
tracey13
in
MPN Voice
6 years ago
Sickle Cell News Week
SICKLECELLNEWSWEEk He will probably be 72 years old before he has another major sickle cell crises … a day in the life of a lab scientist http://bit.ly/2EItuzp Nigeria 2019 – Presidential Candidate Hooks Up With SCD Group on Whatsapp – says Sickle Cell not a barrier to a purposeful life http://bit.ly
SICKLECELLNEWSWEEk He will probably be 72 years old before he has another major sickle cell crises … a day in the life of a lab scientist http://bit.ly/2EItuzp Nigeria 2019 – Presidential Candidate Hooks Up With SCD Group on Whatsapp – says Sickle Cell not a barrier to a purposeful life http://bit.ly
sicklecellnews
in
Sickle Cell Society
6 years ago
Chemo-Free Treatment Best Option for CLL Patients Under 70
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
GlennSabin
in
CLL Support
6 years ago
Therapy y Sickle Cell
Hi everyone. I am 41 years old and I have sickle cell anemia. I would like to share something which is the Bemer therapy that is helping my blood to flow better and that relieves the pain in my shoulders as I have had several infarcts in both of my shoulders. I continue with my medications every day
Hi everyone. I am 41 years old and I have sickle cell anemia. I would like to share something which is the Bemer therapy that is helping my blood to flow better and that relieves the pain in my shoulders as I have had several infarcts in both of my shoulders. I continue with my medications every day
Sabata
in
Sickle Cell Society
6 years ago
SICKLE CELL NEWSWEEK
Young medical graduate tells Paediatrics Professor, YOU KNOW NOTHING ABOUT SICKLE CELL!!! http://bit.ly/2QAqM59 Seven-year-old diagnosed with spinal cord stroke – long road to recovery http://bit.ly/2RZTJnL UK-based Richard Coker Foundation takes sickle cell awareness seminar to Girls’ College
Young medical graduate tells Paediatrics Professor, YOU KNOW NOTHING ABOUT SICKLE CELL!!! http://bit.ly/2QAqM59 Seven-year-old diagnosed with spinal cord stroke – long road to recovery http://bit.ly/2RZTJnL UK-based Richard Coker Foundation takes sickle cell awareness seminar to Girls’ College
sicklecellnews
in
Sickle Cell Society
6 years ago
Emerging cell cycle inhibitors for treating metastatic castration-resistant prostate cancer.
New paper below. As someone who believes that halting cell cycle progression can be almost as good as inducing cell death in PCa, I was interested to see a paper on the topic. "Review of the current literature identified cell cycle inhibitors under study in early phase clinical trials targeting the G1
New paper below. As someone who believes that halting cell cycle progression can be almost as good as inducing cell death in PCa, I was interested to see a paper on the topic. "Review of the current literature identified cell cycle inhibitors under study in early phase clinical trials targeting the G1
pjoshea13
in
Advanced Prostate Cancer
6 years ago
New in fight with ALD
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
MonaStoica
in
Leukodystrophy Support
6 years ago
SICKLECELLNEWSWEEK
Beverley Francis-Gibson, SCDAA President/CEO writes for SICKLE CELL NEWS – my mandate is to shed light on SCD and break down the barriers of stigma http://bit.ly/2zp7zsf Anne Welsh, former Chairperson, Sickle Cell Society (UK) writes for SICKLE CELL NEWS – you look OK to an observer, but FEEL otherwise
Beverley Francis-Gibson, SCDAA President/CEO writes for SICKLE CELL NEWS – my mandate is to shed light on SCD and break down the barriers of stigma http://bit.ly/2zp7zsf Anne Welsh, former Chairperson, Sickle Cell Society (UK) writes for SICKLE CELL NEWS – you look OK to an observer, but FEEL otherwise
sicklecellnews
in
Sickle Cell Society
6 years ago
SCD and Keto
Hi, has anyone tried keto diet to help with sickle cell crisis? My niece has SCD has been in the hospital for months. She had to Withdraw from college also. The pain is relentless this time. I’m just thinking outside the box. She is on so much pain meds she can barely keep her eyes open. This can’t
Hi, has anyone tried keto diet to help with sickle cell crisis? My niece has SCD has been in the hospital for months. She had to Withdraw from college also. The pain is relentless this time. I’m just thinking outside the box. She is on so much pain meds she can barely keep her eyes open. This can’t
Suzyannb
in
Sickle Cell Society
6 years ago
High Platelet count
Had blood work done this morning for a hepatologist appointment next week. Less than 3 hours later got a call from the Dr.'s office; high platelet count (I haven't seen the numbers yet). The recommendation is that I see a hematologist. Any one else have high platelet count? I checked and there were
Had blood work done this morning for a hepatologist appointment next week. Less than 3 hours later got a call from the Dr.'s office; high platelet count (I haven't seen the numbers yet). The recommendation is that I see a hematologist. Any one else have high platelet count? I checked and there were
kp1234
in
PBC Foundation
6 years ago
Bone Marrow Transplant Failed
In early 2017, I took a big bet. I suspended normal cancer treatments, in order to preserve my eligibility for a very novel phase 1 clinical trial. Initially, I didn't qualify, but they agreed to modify the trial to make me eligible. That process took a while, so we didn't get started until late 2017
In early 2017, I took a big bet. I suspended normal cancer treatments, in order to preserve my eligibility for a very novel phase 1 clinical trial. Initially, I didn't qualify, but they agreed to modify the trial to make me eligible. That process took a while, so we didn't get started until late 2017
Beauxman
in
Advanced Prostate Cancer
6 years ago
Dr Manos Nikolousis discusses new drugs now available to treat Acute Myeloid Leukaemia (AML)
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
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