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MDS UK Patient Support (pinned post)
Approx. 20% of Sweet's syndrome (SS) patients develop their condition secondary to cancer, the commonest being a group of blood disorders called myelodysplastic syndromes (MDS) and
acute
myeloid
leukaemia
(MDS can progress to AML).
Approx. 20% of Sweet's syndrome (SS) patients develop their condition secondary to cancer, the commonest being a group of blood disorders called myelodysplastic syndromes (MDS) and
acute
myeloid
leukaemia
(MDS can progress to AML).
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
5 years ago
Cancer Fatigue and Getting Through the Holidays
The Leukemia & Lymphoma Society is offering a Free Telephone Support Program for Patients Families and Caregivers. - Click this link to register: https://pburkhard.wufoo.com/forms/qrfew60160p1a4/ or http://bit.ly/DecLnL. Cancer Fatigue and Getting Through the Holidays When: Wednesday
The Leukemia & Lymphoma Society is offering a Free Telephone Support Program for Patients Families and Caregivers. - Click this link to register: https://pburkhard.wufoo.com/forms/qrfew60160p1a4/ or http://bit.ly/DecLnL. Cancer Fatigue and Getting Through the Holidays When: Wednesday
lankisterguy
Volunteer
in
CLL Support
5 years ago
Blood cancers: New generation stem cell transplant significantly reduces complications for patients
Post by MPN-MATE Admin » Wed Nov 06, 2019 9:21 am Hey everyone... :-) More great good news is coming our way... This article has already successfully run 'Human Trials', and in the USA, it's about to be accepted by the FDA for a Phase III Clinical Trial... Impressive results as you will see from reading
Post by MPN-MATE Admin » Wed Nov 06, 2019 9:21 am Hey everyone... :-) More great good news is coming our way... This article has already successfully run 'Human Trials', and in the USA, it's about to be accepted by the FDA for a Phase III Clinical Trial... Impressive results as you will see from reading
socrates_8
in
MPN Voice
5 years ago
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A conundrum for use v. non-use of specific amino acids in muscle atrophy and immune support for CLL patients
CLL and cancer patients, particularly those over 70, are often concerned about muscle wasting or muscle atrophy. Sarcopenia is characterized as the progressive loss of muscle mass that is typically associated with aging. These patients are frequently advised to increase their intake of dietary proteins
CLL and cancer patients, particularly those over 70, are often concerned about muscle wasting or muscle atrophy. Sarcopenia is characterized as the progressive loss of muscle mass that is typically associated with aging. These patients are frequently advised to increase their intake of dietary proteins
Higsby
in
CLL Support
5 years ago
Extensive body heat.
Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?
Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?
Boriqua
in
MPN Voice
5 years ago
Take both Nplate and Rituximab at the same time
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
farasad2001
in
ITP Support Association
5 years ago
Don’t ever give up hope of getting answers to why your so ill, it just needs to be dealt with by the right person.
Finally saw a Dr who listened to me and put me in the right direction and I was offered an Referal with an immunologist after much I’ll health and many symptoms. Why wasn’t it picked up on sooner and why does it take so long, no wonder people give up all hope of ever being believed and treated. Was very
Finally saw a Dr who listened to me and put me in the right direction and I was offered an Referal with an immunologist after much I’ll health and many symptoms. Why wasn’t it picked up on sooner and why does it take so long, no wonder people give up all hope of ever being believed and treated. Was very
Hidden
in
LUPUS UK
5 years ago
I would like to hear from people needing regular blood transfusions
Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need transfusions of packed red cells probably monthly. This started 5 months ago. I've been having 4 units (that is approx 1 litre total) (I'm in Australia
Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need transfusions of packed red cells probably monthly. This started 5 months ago. I've been having 4 units (that is approx 1 litre total) (I'm in Australia
Jotame
in
CLL Support
5 years ago
Not what it turned out to be
Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different than it turned out to be on 10/06. It turned out to be CML. I'll probably remain in this group as it remains to be very helpful when dealing with
Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different than it turned out to be on 10/06. It turned out to be CML. I'll probably remain in this group as it remains to be very helpful when dealing with
mdcupp6201
in
MPN Voice
5 years ago
Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
Jotame
in
CLL Support
5 years ago
A brief explanation of Sweet's syndrome triggers (pinned post)
- Cancer (approx. 20%), mainly myelodysplastic syndromes and
acute
myeloid
leukaemia
. - Inflammatory bowel disease - Crohn's disease and ulcerative colitis. - Autoimmune disease, e.g. rheumatoid arthritis or systemic lupus erythematosus. - Medication (12%).
- Cancer (approx. 20%), mainly myelodysplastic syndromes and
acute
myeloid
leukaemia
. - Inflammatory bowel disease - Crohn's disease and ulcerative colitis. - Autoimmune disease, e.g. rheumatoid arthritis or systemic lupus erythematosus. - Medication (12%).
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
5 years ago
Polycythemia Vera with myelofibrosis
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
IK5555
in
MPN Voice
5 years ago
CLL Specialist
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
Hidden
in
CLL Support
5 years ago
Are they faking this serious illness?
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
Justwantanswers
in
Leukaemia Support
5 years ago
Leukaemia Care Updated Patient Information - Richter's Syndrome in Chronic Lymphocytic Leukaemia
Leukaemia Care is a UK charity so the support information is UK based. However the information about Richter's is useful, up to date and well laid out. https://media.leukaemiacare.org.uk/wp-content/uploads/Richter-Syndrome-in-Chronic-Lymphocytic-Leukaemia-CLL-Web-Version.pdf Jackie
UPDATE:
Leukaemia Care is a UK charity so the support information is UK based. However the information about Richter's is useful, up to date and well laid out. https://media.leukaemiacare.org.uk/wp-content/uploads/Richter-Syndrome-in-Chronic-Lymphocytic-Leukaemia-CLL-Web-Version.pdf Jackie
UPDATE:
Jm954
Administrator
in
CLL Support
5 years ago
CLL Transformation - Richter's?
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
SarasotaPaul
in
CLL Support
5 years ago
iWCLL Guidelines for the diagnosis, management and treatment of CLL - a brief history and the changes in last year's long awaited update
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
AussieNeil
Partner
in
CLL Support
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
New meds for Myelofibrosis
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Cja1956
in
MPN Voice
5 years ago
Now PCV go's Beyond limit
Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(50.1) I refer my report to my hematologist and call me for phlebotomy. After 9 months i will have phlebotomy Anyone has secondary polycythemia and do phlebotomy after so long period??
Hi everyone! Yesterday i got my CBC reports and my PCV go's beyond normal limit(50.1) I refer my report to my hematologist and call me for phlebotomy. After 9 months i will have phlebotomy Anyone has secondary polycythemia and do phlebotomy after so long period??
Vigiindia
in
MPN Voice
5 years ago
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