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Not diagnosed, but suspected
Edit: letter from haematologist- BCR/ABL and JAK2 are negative m, awaiting rarer test results, but he thinks could be related to infection / endocrine issues. Relieved, but puzzled! Thank you everyone for replying, I guess I was premature in posting!! Hi. I’m just struggling today as I’m in that waiting
Edit: letter from haematologist- BCR/ABL and JAK2 are negative m, awaiting rarer test results, but he thinks could be related to infection / endocrine issues. Relieved, but puzzled! Thank you everyone for replying, I guess I was premature in posting!! Hi. I’m just struggling today as I’m in that waiting
KayS68
in
MPN Voice
3 years ago
Oh dear
Well last night I decided to go to the beach again on my quad sit on beach for an hour . Unfortunately things didn't turn out that way ! Going down the beach road and wasn't concentrating mind not on what I was doing anything I had a seizure and lost control of the quad it went one way upside down my
Well last night I decided to go to the beach again on my quad sit on beach for an hour . Unfortunately things didn't turn out that way ! Going down the beach road and wasn't concentrating mind not on what I was doing anything I had a seizure and lost control of the quad it went one way upside down my
Hidden
in
Lung Conditions Community Forum
3 years ago
Hairy cell leukaemia - 3 months after chemo
Hi, Telephone consultation with my haematologist this morning, rather stunning blood test results - haemoglobin up from 110 to 135 so now normal... white cell count up from 1.7 to 4.1 so now normal, neutrophils up from 1.2 to 2.4 so now normal, although platelets down from 138 to 106 so still not in
Hi, Telephone consultation with my haematologist this morning, rather stunning blood test results - haemoglobin up from 110 to 135 so now normal... white cell count up from 1.7 to 4.1 so now normal, neutrophils up from 1.2 to 2.4 so now normal, although platelets down from 138 to 106 so still not in
frankmok
in
Leukaemia Support
3 years ago
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Understanding High Iron
Hi everyone. For those diagnosed with Leukemia, can you tell me what your Iron and Ferritin levels are? These are typically elevated in Leukemia patients. I have a follow-up and consultation with my doctor coming in a few weeks but am gathering a bit of information (aside from google searches) on my
Hi everyone. For those diagnosed with Leukemia, can you tell me what your Iron and Ferritin levels are? These are typically elevated in Leukemia patients. I have a follow-up and consultation with my doctor coming in a few weeks but am gathering a bit of information (aside from google searches) on my
UhOhCKD
in
Leukaemia Support
3 years ago
Any Knowledge of CLL in the eyes?
A biopsy confirmed a diagnosis of CLL in both lower eyelids. This is a rare event. Neither my hematologist-oncologist or CLL Specialist have ever had a patient with it. They tell me that acalabrutinib, which I'll start next week, is sufficient treatment. From what I've read, I'm still uncomfortable
A biopsy confirmed a diagnosis of CLL in both lower eyelids. This is a rare event. Neither my hematologist-oncologist or CLL Specialist have ever had a patient with it. They tell me that acalabrutinib, which I'll start next week, is sufficient treatment. From what I've read, I'm still uncomfortable
cll2013
in
CLL Support
3 years ago
Side Effects of Bendamustine?
I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the treatment I have had, I have never had this one, so I am wondering if you could share what your experiences were. Thanks much.
I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start Rituxan and Bendamustine next week. With all the treatment I have had, I have never had this one, so I am wondering if you could share what your experiences were. Thanks much.
KevinCLLITP
in
CLL Support
3 years ago
immunohistochemistry need help understanding
I am seeing my doctor on Tuesday but was able to get some results online from my bone marrow biopsy - Additional tests ordered: Cytogenetics and FISH (CLL panel) Can someone help me understand the findings below - thank you Marker Result Description CD20 Positive Pan B Cell Antigen (L26) CD3 T-cells
I am seeing my doctor on Tuesday but was able to get some results online from my bone marrow biopsy - Additional tests ordered: Cytogenetics and FISH (CLL panel) Can someone help me understand the findings below - thank you Marker Result Description CD20 Positive Pan B Cell Antigen (L26) CD3 T-cells
kp58ny
in
CLL Support
3 years ago
Cost for treatment
Hi everyone, i am hoping you can help. My dad was diagnosed with CLL about a month ago. He just received his information package in the mail from the specialist which indicated that he requires insurance to cover any medical expenses. We are from Ontario Canada so wondering what the cost is for the
Hi everyone, i am hoping you can help. My dad was diagnosed with CLL about a month ago. He just received his information package in the mail from the specialist which indicated that he requires insurance to cover any medical expenses. We are from Ontario Canada so wondering what the cost is for the
Rubymom
in
CLL Support
3 years ago
Just joined
Hi, I am about to start treatment with acalabrutinib for my cll, I was originally told I would be treated with venetoclax and Obinutuzumab but I also receive treatment for my bladder cancer so my consultant said I wouldn’t be able to receive the v+o while also receiving the BCG for bladder cancer. I
Hi, I am about to start treatment with acalabrutinib for my cll, I was originally told I would be treated with venetoclax and Obinutuzumab but I also receive treatment for my bladder cancer so my consultant said I wouldn’t be able to receive the v+o while also receiving the BCG for bladder cancer. I
Mtk1
in
CLL Support
3 years ago
Has anyone achieved a reduction in fatigue from PMR through the introduction of tocilizumab (Actemra) into their treatment regimen?
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is
Ozark
in
PMRGCAuk
3 years ago
World CLL Day
Good morning, 1st September, where is the year going. Getting used to it being dull now, longing for some sun. Blood tests this morning and then possibly a journalist in conjunction with Leukaemia Care calling to do an interview for Spot Leukaemia Early campaign month. Have already made a video which
Good morning, 1st September, where is the year going. Getting used to it being dull now, longing for some sun. Blood tests this morning and then possibly a journalist in conjunction with Leukaemia Care calling to do an interview for Spot Leukaemia Early campaign month. Have already made a video which
kitchengardener2
in
CLL Support
3 years ago
Getting there….🏃♀️
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
After dealing with cancer, radiotherapy , chemotherapy , a stem cell transplant & a total hip replacement less then 10mts ago - I have just completed week 6 & Run 2! The thought of catching COVID because of my health issues has kept me locked away for nearly 2yrs - getting back out there to run has helped
SunShineRae
in
Couch to 5K
3 years ago
Red painful Feet
I have been on WOW for 6 years now with blood results relatively OK. However for last 2 years I have painful feet, soles and side and base of toe. Feet do not like heat. Cycles of socks on; to heat feet and socks off: to stop pain and red/purple colour. GP suggested fungus or venous leaking or dermititis
I have been on WOW for 6 years now with blood results relatively OK. However for last 2 years I have painful feet, soles and side and base of toe. Feet do not like heat. Cycles of socks on; to heat feet and socks off: to stop pain and red/purple colour. GP suggested fungus or venous leaking or dermititis
Marchmouse
in
CLL Support
3 years ago
Frontline treatment of Chronic Lymphocytic Leukemia (CLL/SLL) in 2021
JCO Oncology Practice has recently published two important papers: a clinical review article by Elizabeth A Brem MD and Susan O'Brien MD and a commentary by Nitin Jain MD which outline the current frontline therapies for CLL. Nitin Jain's excellent summary, titled '
[i]Evolving Treatment Paradigm
JCO Oncology Practice has recently published two important papers: a clinical review article by Elizabeth A Brem MD and Susan O'Brien MD and a commentary by Nitin Jain MD which outline the current frontline therapies for CLL. Nitin Jain's excellent summary, titled '
[i]Evolving Treatment Paradigm
CLLerinOz
Administrator
in
CLL Support
3 years ago
Myelofibrosis worsened so going to start ruxolitinib
I've had my second consultant appointment since being diagnosed with post ET myelofibrosis about 1 month ago. Then I was intermediate level 1 with platelet count 117 which gave me a median survival of 14 years. Now my platelets have gone down to about 70 do I'm now intermediate level 2 with a median
I've had my second consultant appointment since being diagnosed with post ET myelofibrosis about 1 month ago. Then I was intermediate level 1 with platelet count 117 which gave me a median survival of 14 years. Now my platelets have gone down to about 70 do I'm now intermediate level 2 with a median
Scaredy_cat
in
MPN Voice
3 years ago
Leukemia and Lymphoma Society 3 D models help improve our understanding of Chronic Lymphocytic Leukemia (CLL/SLL)
The Leukemia and Lymphoma Society of the USA https://www.lls.org (well worth joining - it's free) has recently released 3D/animated models to help us better visualise how blood cancers impact on our health. The following links are to annotated models of specific interest to those of us with CLL/SLL
The Leukemia and Lymphoma Society of the USA https://www.lls.org (well worth joining - it's free) has recently released 3D/animated models to help us better visualise how blood cancers impact on our health. The following links are to annotated models of specific interest to those of us with CLL/SLL
AussieNeil
Partner
in
CLL Support
3 years ago
Where does CLL apoptosis take place?
After watching the video (Living With Chronic Lymphocytic Leukemia) I’m curious as to where the CLL cells death (apoptosis) takes place? In the blood? In the marrow? In the lymph nodes? In the spleen? All of the above? The part of the video (below*) is what got me thinking about this. “Dr. Vose: Bruton's
After watching the video (Living With Chronic Lymphocytic Leukemia) I’m curious as to where the CLL cells death (apoptosis) takes place? In the blood? In the marrow? In the lymph nodes? In the spleen? All of the above? The part of the video (below*) is what got me thinking about this. “Dr. Vose: Bruton's
Lavinia-Blue
in
CLL Support
3 years ago
HLH & CLL
Hi All, CLL diagnosed in 2014 and HLH on top of that in 2018. HLH makes CLL look like a cold it's nasty and I thank God for every day that I'm still here and as of yet not needed a transplant. I'm now 43 years of age. Is anyone out there in the same boat? Have a great weekend all! 😊
Hi All, CLL diagnosed in 2014 and HLH on top of that in 2018. HLH makes CLL look like a cold it's nasty and I thank God for every day that I'm still here and as of yet not needed a transplant. I'm now 43 years of age. Is anyone out there in the same boat? Have a great weekend all! 😊
Shirty78
in
CLL Support
3 years ago
Step out for Spot Leukaemia to help fund support for people affected by a diagnosis of leukaemia
September is Blood Cancer Awareness Month and the Leukaemia Care Spot Leukaemia campaign begins. Please consider joining us in fundraising activities to help support people affected by a diagnosis of leukaemia. The Step out for Spot Leukaemia is a terrific opportunity to have a socially distanced adventure
September is Blood Cancer Awareness Month and the Leukaemia Care Spot Leukaemia campaign begins. Please consider joining us in fundraising activities to help support people affected by a diagnosis of leukaemia. The Step out for Spot Leukaemia is a terrific opportunity to have a socially distanced adventure
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
New Diagnosis - Everything Normal except cytology
Just diagnosed this month, age 49. My lymphocytes are elevated and my cytology shows “atypical” CLL. All my other labs were good and I am mutated with normal FISH results. My doc says this is all good but I feel like I’m waiting for the other shoe to drop. Like someone is going to come to me and say,
Just diagnosed this month, age 49. My lymphocytes are elevated and my cytology shows “atypical” CLL. All my other labs were good and I am mutated with normal FISH results. My doc says this is all good but I feel like I’m waiting for the other shoe to drop. Like someone is going to come to me and say,
Keggs2020
in
CLL Support
3 years ago
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