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Advocacy caseworker now available
A little update from
Leukaemia
Care - we now have an advocacy case worker within the office. What does this mean?
A little update from
Leukaemia
Care - we now have an advocacy case worker within the office. What does this mean?
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
6 years ago
NEWS - Scottish Medicines Consortium (SMC) recommended the use of inotuzumab ozogamicin
The Scottish Medicines Consortium (SMC) issues restricted recommendation for use of inotuzumab ozogamicin in the treatment of adults with relapsed/refractory acute lymphoblastic
leukaemia
(ALL) in Scotland.
The Scottish Medicines Consortium (SMC) issues restricted recommendation for use of inotuzumab ozogamicin in the treatment of adults with relapsed/refractory acute lymphoblastic
leukaemia
(ALL) in Scotland.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Concernef
i had yearly mammogram June 11 was about a month late because of wreck , recalled July 2 with concerns of finding lymph node they said 4 inches but think they meant 4 cm , my concern is my sister passed away from breast cancer metastasis , is their a blood test that can show if cancer cells present
i had yearly mammogram June 11 was about a month late because of wreck , recalled July 2 with concerns of finding lymph node they said 4 inches but think they meant 4 cm , my concern is my sister passed away from breast cancer metastasis , is their a blood test that can show if cancer cells present
Rjbp1950
in
CLL Support
6 years ago
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Ruxolitinib
Had my first haemo appointment today since starting Ruxolitinib 2 1/2 weeks ago. My bloods were all good and my platelets have moved down (albeit slowly) to 800. It is going in the right direction. Symptoms have improved particularly the itching (unless I have a very hot bath and even then is far better
Had my first haemo appointment today since starting Ruxolitinib 2 1/2 weeks ago. My bloods were all good and my platelets have moved down (albeit slowly) to 800. It is going in the right direction. Symptoms have improved particularly the itching (unless I have a very hot bath and even then is far better
Graham7694
in
MPN Voice
6 years ago
efsa assesses safety of green tea catechins
https://www.efsa.europa.eu/en/press/news/180418 It's been been noted here before that too much green tea may cause some liver damage. Here is a European study that verifies that. Strangely for me is that I take four capsules of 200 mg EGCG and that is the exact exact amount - 800 mg per day - the study
https://www.efsa.europa.eu/en/press/news/180418 It's been been noted here before that too much green tea may cause some liver damage. Here is a European study that verifies that. Strangely for me is that I take four capsules of 200 mg EGCG and that is the exact exact amount - 800 mg per day - the study
gemit2000
in
CLL Support
6 years ago
Bone Marrow Biopsy showing Manoclonal B Lymphocytosis
Hello My name is Gloria, My husband Angel has been fighting small B-Cell Lymphocytic Leukemia/lymphoma for more than 8 years and none of the chemotherapy has helped him. The only treatment that helped him was Imbrivica (Ibrutinib)for a year his blood levels improved almost to normal levels but, the
Hello My name is Gloria, My husband Angel has been fighting small B-Cell Lymphocytic Leukemia/lymphoma for more than 8 years and none of the chemotherapy has helped him. The only treatment that helped him was Imbrivica (Ibrutinib)for a year his blood levels improved almost to normal levels but, the
gsanchez
in
CLL Support
6 years ago
Letter to my MP regarding funding of Ibrutinib
CLL is an incurable blood cancer and the most common form of
leukaemia
in adults in the UK. CLL is not treatable using surgery or radiotherapy, so access to effective and well-tolerated drug treatments is essential.
CLL is an incurable blood cancer and the most common form of
leukaemia
in adults in the UK. CLL is not treatable using surgery or radiotherapy, so access to effective and well-tolerated drug treatments is essential.
Ruhi9
in
CLL Support
6 years ago
MPN JAK2+ some results today from the hematologist here in France
The surgeon that removed my wife's spleen on the 2 may saw us on Friday to check she was doing well. He is a very nice man. He phoned the hematologist to check if he had any results on the tests he ran. We saw the hematologist today. My wife is JAK positive and has an MPN though still not diagnosed
The surgeon that removed my wife's spleen on the 2 may saw us on Friday to check she was doing well. He is a very nice man. He phoned the hematologist to check if he had any results on the tests he ran. We saw the hematologist today. My wife is JAK positive and has an MPN though still not diagnosed
jointpain
in
MPN Voice
6 years ago
Gazyva again?
Hi All, Has anyone had Gazyva for second line treatment? I had Gazyva in late 2016, was only in remission for a few months and then the lymphoma started coming back again in my parotid gland. I've been in W&W since but my blood numbers have been going down in the past few months. Platelets have gone
Hi All, Has anyone had Gazyva for second line treatment? I had Gazyva in late 2016, was only in remission for a few months and then the lymphoma started coming back again in my parotid gland. I've been in W&W since but my blood numbers have been going down in the past few months. Platelets have gone
skinkade
in
CLL Support
6 years ago
Enlarged liver
I was diagnosed with myelofibrosis 4 years ago and am on Ruxolitinib 25 mg daily. Had it reduced some time ago to see if the dose was tied into the rising alt levels. When I was first diagnosed I had an enlarged spleen and liver but Ruxolitinib reduced them. However for about 8 months I have been
I was diagnosed with myelofibrosis 4 years ago and am on Ruxolitinib 25 mg daily. Had it reduced some time ago to see if the dose was tied into the rising alt levels. When I was first diagnosed I had an enlarged spleen and liver but Ruxolitinib reduced them. However for about 8 months I have been
Cazbolac
in
MPN Voice
6 years ago
Ibrutinib and NHSE current position.
https://www.england.nhs.uk/wp-content/uploads/2018/06/Patient-access-to-ibrutinib-for-previously-treated-chronic-lymphocytic-
leukaemia
-in-England.pdf If you require any further information or wish to speak to someone about your enquiry, please contact NHS England at the email address and telephone
https://www.england.nhs.uk/wp-content/uploads/2018/06/Patient-access-to-ibrutinib-for-previously-treated-chronic-lymphocytic-
leukaemia
-in-England.pdf If you require any further information or wish to speak to someone about your enquiry, please contact NHS England at the email address and telephone
Mick491
in
CLL Support
6 years ago
Any opinions on these results before I see the specialist next week?
[i]I had a bone marrow biopsy done and the flow cytometry results were posted on the hospital website today. I don't see my doctor until next week so I thought that I would post the results here to get some opinions before I see him. I know that the CD38 positive at 41% is not good. Anything else
[i]I had a bone marrow biopsy done and the flow cytometry results were posted on the hospital website today. I don't see my doctor until next week so I thought that I would post the results here to get some opinions before I see him. I know that the CD38 positive at 41% is not good. Anything else
hhk50
in
CLL Support
6 years ago
My new CLL Treatment
My oncologist is recommending a drip of Rituxan and Bendamustine for my CLL treatment to replace Imbruvica since I had heart issues with this drug. Is anyone else getting this treatment? If so, any serious side effects?
My oncologist is recommending a drip of Rituxan and Bendamustine for my CLL treatment to replace Imbruvica since I had heart issues with this drug. Is anyone else getting this treatment? If so, any serious side effects?
umpireman
in
CLL Support
6 years ago
LDH level 525 anaemia
Hai sir my wife LDH level 525and severe anaemia hb6.2 only..20 days before 3 unit blood transfusion over but again hb down..ferrittin test 1100...how to control hb..this is cancer or not
Hai sir my wife LDH level 525and severe anaemia hb6.2 only..20 days before 3 unit blood transfusion over but again hb down..ferrittin test 1100...how to control hb..this is cancer or not
abinjosephranni
in
CLL Support
6 years ago
CLL Society Alert- Toronto Support Group Poll, Dr. Hallek interview, European Hematology Assoc. & Patient meetings in person and online.
While the CLL Society has a USA foundation ( just as the HU CLL SA started in UK) this month's email update has some articles that may be of interest to Canadian and European readers: http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=6fce9f05-a2ef-417d-ac35-2545753a8d95 https://cllsociety.org
While the CLL Society has a USA foundation ( just as the HU CLL SA started in UK) this month's email update has some articles that may be of interest to Canadian and European readers: http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=6fce9f05-a2ef-417d-ac35-2545753a8d95 https://cllsociety.org
lankisterguy
Volunteer
in
CLL Support
6 years ago
Mbl cll like
Hello ! This is my first post !! 1 and a half year ago at the age of 29 i had a blood test that showed my wbc around 13000 and alc around 7000. After a flow cytometry test i was diagnosed with monoclonal b lympocytosis (mbl cll like). I have no other symptoms till then only raised wbc and alc. I do
Hello ! This is my first post !! 1 and a half year ago at the age of 29 i had a blood test that showed my wbc around 13000 and alc around 7000. After a flow cytometry test i was diagnosed with monoclonal b lympocytosis (mbl cll like). I have no other symptoms till then only raised wbc and alc. I do
Ioti
in
CLL Support
6 years ago
SCT just got real.
I had my bone marrow trephine 2 weeks ago and, having not recieved a follow up appointment, decided to call the hospital this morning. Imagine my surprise when the nurse not only tells me that I have a date for the pre transplant tests, but an admission date for the SCT too. All became very real suddenly
I had my bone marrow trephine 2 weeks ago and, having not recieved a follow up appointment, decided to call the hospital this morning. Imagine my surprise when the nurse not only tells me that I have a date for the pre transplant tests, but an admission date for the SCT too. All became very real suddenly
KAS8
in
CLL Support
6 years ago
My own Watch Wait and Worry CLL story
The day lukaemia changed my life: http://wp.production.patheos.com/blogs/sites/298/2018/04/The-day-
leukaemia
-changed-my-life.pdf
The day lukaemia changed my life: http://wp.production.patheos.com/blogs/sites/298/2018/04/The-day-
leukaemia
-changed-my-life.pdf
AdrianUK
in
Leukaemia CARE
6 years ago
Dilated Cardiomyopathy at 33
It appears it’s been caused by chemotherapy I had for
Leukaemia
12 years ago. I’m absolutely terrified and would love to hear from anyone else living well with dilated cardiomyopathy, any tips or support will be hugely appreciated, Thank you xxx
It appears it’s been caused by chemotherapy I had for
Leukaemia
12 years ago. I’m absolutely terrified and would love to hear from anyone else living well with dilated cardiomyopathy, any tips or support will be hugely appreciated, Thank you xxx
CharlieLNicholls
in
British Heart Foundation
6 years ago
Newcomer
Hi everyone I've recently been diagnosed with cll and tomorrow..I have my ct scan...I can't help feeling I'm going to die..it came as a shock as I only went for cholesterol test. My doctor ordered more tests and within a week I had marrow biopsy and results. I have no real symptoms.. and work really
Hi everyone I've recently been diagnosed with cll and tomorrow..I have my ct scan...I can't help feeling I'm going to die..it came as a shock as I only went for cholesterol test. My doctor ordered more tests and within a week I had marrow biopsy and results. I have no real symptoms.. and work really
Feelsolow
in
CLL Support
6 years ago
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