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Mast cell leukaemia
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CoQ10 Benefits?
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Elam
in
CLL Support
5 years ago
Holy Tired
Hello, 50 year old male. Diagnosed with cll nearly 2 years ago. I see cll specialist every 3 months. 13q deleted. W and W. Dr. Not concerned about my blood numbers or my symtom. I have complained about one symptom since acquiring cll and that is fatigue. The fatigue can get so bad that it is affecting
Hello, 50 year old male. Diagnosed with cll nearly 2 years ago. I see cll specialist every 3 months. 13q deleted. W and W. Dr. Not concerned about my blood numbers or my symtom. I have complained about one symptom since acquiring cll and that is fatigue. The fatigue can get so bad that it is affecting
Dew77
in
CLL Support
5 years ago
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
5 years ago
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Laymen’s genetic markers, fish test etc
Wondering where or maybe here someone can enlighten me about genetic markers involved in cll! Plan on starting treatment next month after almost 11 years W/W. I called the dr.s office this am 5:45 to be exact and asked to have a fish panel added. So I guess I’d also like to know what Genetic maker
Wondering where or maybe here someone can enlighten me about genetic markers involved in cll! Plan on starting treatment next month after almost 11 years W/W. I called the dr.s office this am 5:45 to be exact and asked to have a fish panel added. So I guess I’d also like to know what Genetic maker
haposwald
in
CLL Support
5 years ago
Donating bone marrow to cure sickle cell anaemia
A bone marrow transplant is the only complete cure for treating sickle cell anaemia. This is a kind of treatment in which the patient’s bone marrow is changed to new healthy bone marrow. This is done either by collecting the patient’s own bone marrow or that of a donor. In the case of sickle cell disease
A bone marrow transplant is the only complete cure for treating sickle cell anaemia. This is a kind of treatment in which the patient’s bone marrow is changed to new healthy bone marrow. This is done either by collecting the patient’s own bone marrow or that of a donor. In the case of sickle cell disease
anjana_indheal
in
Living with Sickle Cell Disease
5 years ago
hydroxyurea side effects?
Hi everyone! I I was recently diagnosed with polycythemia vera and I would like to know what side effects have been experienced by others taking hydroxyurea. Any comment will be welcome!
Hi everyone! I I was recently diagnosed with polycythemia vera and I would like to know what side effects have been experienced by others taking hydroxyurea. Any comment will be welcome!
IsabelPV
in
MPN Voice
5 years ago
CLL Counts Reducing.
Hi, I am new to this site. I was diagnosed with CLL about 5yrs ago. I am watch and wait, with no signs of any symptoms. On 3/04/2017 my white cell count was 86.9, Units 10^9/L, Range (4.0-11.0). My Lymphocytes where 79.1, Units 10^9/L, Range (1.0-4.0). Since the 3/04/2017 I have had blood tests every
Hi, I am new to this site. I was diagnosed with CLL about 5yrs ago. I am watch and wait, with no signs of any symptoms. On 3/04/2017 my white cell count was 86.9, Units 10^9/L, Range (4.0-11.0). My Lymphocytes where 79.1, Units 10^9/L, Range (1.0-4.0). Since the 3/04/2017 I have had blood tests every
cartnpeg
in
CLL Support
5 years ago
MST Continus 5mg
Has anyone else been giving MST Continus 5mg for the pain? If so how were the side effects?
Has anyone else been giving MST Continus 5mg for the pain? If so how were the side effects?
Lovisa
in
Endometriosis UK
5 years ago
SICKLE CELL NEWSWEEK
FATIMAH had a stroke at the age of 7. She recovered 100% and graduates May 2019 with a degree in Public Finance http://bit.ly/2FAO2KD Zandra Chidinma Nwogu’s first pain crises in eight years - ‘Water Marathon Therapy’ to the rescueh ttp://bit.ly/2HvAi5k Folks with SCD can only TAKE but not GIVE blood
FATIMAH had a stroke at the age of 7. She recovered 100% and graduates May 2019 with a degree in Public Finance http://bit.ly/2FAO2KD Zandra Chidinma Nwogu’s first pain crises in eight years - ‘Water Marathon Therapy’ to the rescueh ttp://bit.ly/2HvAi5k Folks with SCD can only TAKE but not GIVE blood
sicklecellnews
in
Sickle Cell Society
5 years ago
Same sample of bone marrow, received different opinion
Hi all As early i had said that i have all test negative and bone marrow was normocellular... I just checked bone marrow block with another hematologist and he said hypercellular I am just confused who is wrong and who is right? And am frustrating to know is that secondary Polycythemia or polycythemia
Hi all As early i had said that i have all test negative and bone marrow was normocellular... I just checked bone marrow block with another hematologist and he said hypercellular I am just confused who is wrong and who is right? And am frustrating to know is that secondary Polycythemia or polycythemia
Vigiindia
in
MPN Voice
5 years ago
Lymph node biopsy to rule out Richtors
So I got the shock of my life. My hematologist wants to have me undergo a fine needle biopsy to rule out RS. They will biopsy the largest node. It’s 5 cm. Well that was a kick to the stomach.
So I got the shock of my life. My hematologist wants to have me undergo a fine needle biopsy to rule out RS. They will biopsy the largest node. It’s 5 cm. Well that was a kick to the stomach.
Lola69
in
CLL Support
5 years ago
NICE approves venetoclax (VENCLYXTO) with rituximab for previously treated chronic lymphocytic leukaemia (CLL) patients
Great NEWS today, relapsing English and Welsh CLL patients have a new treatment approved by NICE. Ireland and Scotland NHS access will soon follow. NICE news article:
Thousands of adults with chronic lymphocytic leukaemia to benefit from new treatment option
[i]Thousands of people will benefit
Great NEWS today, relapsing English and Welsh CLL patients have a new treatment approved by NICE. Ireland and Scotland NHS access will soon follow. NICE news article:
Thousands of adults with chronic lymphocytic leukaemia to benefit from new treatment option
[i]Thousands of people will benefit
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
CLL Society Alert (newsletter for USA patients)- Video Interviews with Dr. Furman, Dr. Koffman- Educational Forums & Support Groups - USA
To read the full details with live HTML links go here: https://cllsociety.org/2019/01/january-29-2019/ or here: https://cllsociety.org/Alerts/January-29-Alert.pdf - Dear Friends and Supporters of the CLL Society, I interviewed Dr. Rick Furman to set the stage for how to best consider some of the new
To read the full details with live HTML links go here: https://cllsociety.org/2019/01/january-29-2019/ or here: https://cllsociety.org/Alerts/January-29-Alert.pdf - Dear Friends and Supporters of the CLL Society, I interviewed Dr. Rick Furman to set the stage for how to best consider some of the new
lankisterguy
Volunteer
in
CLL Support
5 years ago
Treatment necessary?
I am 13q mutated. 80% involvement in narrow. Diagnosed in oct 2011, started CVP in June 2012 due to doubling time. Went from 30k to over 60k in less than 6 months. In Nov 2012, I started rituxan. Treatment once every 3 months. First 3 treatments went fine. Then they had to stop because of severe
I am 13q mutated. 80% involvement in narrow. Diagnosed in oct 2011, started CVP in June 2012 due to doubling time. Went from 30k to over 60k in less than 6 months. In Nov 2012, I started rituxan. Treatment once every 3 months. First 3 treatments went fine. Then they had to stop because of severe
MyCLLJourney
in
CLL Support
5 years ago
Hey There
Hi everyone this is just a post of me introducing myself, I'm not sure how close of a community you guys are but it's nice to be a part of something where people can really relate. My name is Kelsey I was born and diagnosed with Sickle Cell Anemia and I'm just trying to keep my shit together lol.
Hi everyone this is just a post of me introducing myself, I'm not sure how close of a community you guys are but it's nice to be a part of something where people can really relate. My name is Kelsey I was born and diagnosed with Sickle Cell Anemia and I'm just trying to keep my shit together lol.
sunshinee
in
Sickle Cell Society
5 years ago
Love is : Valentines Day Together in Clinic. . 💘
It's been some time since I posted but I keep in touch with the posts. It's part of me moving on in my lengthy recovery. I know from what I see that there are many new Forum members since I was active and that's great because we know it's one of the best sources of information , support and help for
It's been some time since I posted but I keep in touch with the posts. It's part of me moving on in my lengthy recovery. I know from what I see that there are many new Forum members since I was active and that's great because we know it's one of the best sources of information , support and help for
JediReject
in
MPN Voice
5 years ago
Spleen enlarged
In February 2017 I was diagnosed with CLL and am on watch and wait. WBC is about 66 and other numbers are fine. During a check up in November 2018 I was told my spleen has enlarged and was given a CT scan on 21st December. They have not contacted me so presume it's stable enough until next check up in
In February 2017 I was diagnosed with CLL and am on watch and wait. WBC is about 66 and other numbers are fine. During a check up in November 2018 I was told my spleen has enlarged and was given a CT scan on 21st December. They have not contacted me so presume it's stable enough until next check up in
Tross88
in
CLL Support
5 years ago
Myelofibrosis and using medical CBD/ marijuana.
I was diagnosed with Myelofibrosis in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really sick and was put on 20 mg of Jakafi 6 months ago now the medication is failing. Got off of Vicodin because of new medical laws, was recommended
I was diagnosed with Myelofibrosis in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really sick and was put on 20 mg of Jakafi 6 months ago now the medication is failing. Got off of Vicodin because of new medical laws, was recommended
Boriqua
in
MPN Voice
5 years ago
Dad in ICU fighting pneumonia and is slow to wake up from induced coma
Hi everyone. I’m wondering if anyone has any encouragement for our situation. My dad is 78 but has always been extremely healthy - a marathon runner until his back stopped him from running and now he’s been an avid swimmer for years and has had no real medical issues. He had a stem cell transplant
Hi everyone. I’m wondering if anyone has any encouragement for our situation. My dad is 78 but has always been extremely healthy - a marathon runner until his back stopped him from running and now he’s been an avid swimmer for years and has had no real medical issues. He had a stem cell transplant
WhitneyS18
in
ICUsteps
5 years ago
Leukaemia Matters winter 2018/19 edition - Leukaemia Care charity activities, community news and patient stories
Leukaemia Matters is a patient magazine published four times a year. [i]'It’s been a busy year for Leukaemia Care, highlighted by the success of our Spot Leukaemia campaign, which reached over 125 million people and helped to educate them on the symptoms of leukaemia. [/i] [i]However, we also sadly lost
Leukaemia Matters is a patient magazine published four times a year. [i]'It’s been a busy year for Leukaemia Care, highlighted by the success of our Spot Leukaemia campaign, which reached over 125 million people and helped to educate them on the symptoms of leukaemia. [/i] [i]However, we also sadly lost
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
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