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Sickle-cell September: What is Sickle-cell?
What is Sickle-Cell Disease? Sickle cell disease (SCD) is an inherited condition that affects the red blood cells and various organs in the body. SCD affects the production of a protein called haemoglobin that carries oxygen throughout the body. Each person inherits two haemoglobin genes, one
What is Sickle-Cell Disease? Sickle cell disease (SCD) is an inherited condition that affects the red blood cells and various organs in the body. SCD affects the production of a protein called haemoglobin that carries oxygen throughout the body. Each person inherits two haemoglobin genes, one
Anzy
in
Sickle Cell Society
6 years ago
Do you know how sickle cell started?
I have read scientists believe that sickle cell started during slavery. This is why black/African Americans are born with the disease more than any other race. During slavery the owners of African people would withhold drinking water from the slaves as a form of hatred and of punishment. Without water
I have read scientists believe that sickle cell started during slavery. This is why black/African Americans are born with the disease more than any other race. During slavery the owners of African people would withhold drinking water from the slaves as a form of hatred and of punishment. Without water
Hidden
in
Sickle Cell Society
6 years ago
bone marrow biopsy
I.m new here 73 men on the 9th year with cll . and started to see some limp nodes in my body doctor wants me to have bone marrow biopsy is anybody knows if its a good idea or anybody done it. thank you for your help good bless.
I.m new here 73 men on the 9th year with cll . and started to see some limp nodes in my body doctor wants me to have bone marrow biopsy is anybody knows if its a good idea or anybody done it. thank you for your help good bless.
wonderfull
in
CLL Support
6 years ago
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Weight gain and Jakafi 20mg
needing to know how much weight is gined while on Jakafi 20mg
needing to know how much weight is gined while on Jakafi 20mg
rkhabtec
in
MPN Voice
6 years ago
Bone Marrow Transplant telephone conference call TODAY September 19, 2018
September Lunch & Learn With The Link: Blood Cancers and the Role of Bone Marrow Transplantation http://www.lls.org/events/blood-cancers-and-the-role-of-bone-marrow-transplantation?src1=22346&src2= This free telephone support program will focus on the role of transplantation in blood cancers, in
September Lunch & Learn With The Link: Blood Cancers and the Role of Bone Marrow Transplantation http://www.lls.org/events/blood-cancers-and-the-role-of-bone-marrow-transplantation?src1=22346&src2= This free telephone support program will focus on the role of transplantation in blood cancers, in
lankisterguy
Volunteer
in
CLL Support
6 years ago
Erythropoietin injections. Immature cells.
Hello. Has anyone had erythropoietin injections? If so, what can you tell us about benefits/side effects. My husband’s hgb is going down and his consultant mentioned these injections as a possible treatment. He has post PV Myelofibrosis. On Ruxolitinib for a year but haematologist does not think the
Hello. Has anyone had erythropoietin injections? If so, what can you tell us about benefits/side effects. My husband’s hgb is going down and his consultant mentioned these injections as a possible treatment. He has post PV Myelofibrosis. On Ruxolitinib for a year but haematologist does not think the
Fika500
in
MPN Voice
6 years ago
A phase II study of ruxolitinib in combination with azacytidine for MF Patients
http://www.bloodjournal.org/content/early/2018/09/05/blood-2018-04-846626?sso-checked=true ‘ A greater than 50% reduction in palpable spleen length at 24 weeks and at any time on the study was achieved in 62% and 71% of the evaluable patients, respectively. Among patients who achieved a >50% reduction
http://www.bloodjournal.org/content/early/2018/09/05/blood-2018-04-846626?sso-checked=true ‘ A greater than 50% reduction in palpable spleen length at 24 weeks and at any time on the study was achieved in 62% and 71% of the evaluable patients, respectively. Among patients who achieved a >50% reduction
Paul123456
in
MPN Voice
6 years ago
Sickle cell and menstruation
I know someone who is sickle cell anaemic, but her menstruation is not regular and when it does come it trickles and there's no use for a sanitary pad. The problem is she's worried that this means she isn't fertile since her menstruation isn't normal. But I read somewhere that the flow isn't much cos
I know someone who is sickle cell anaemic, but her menstruation is not regular and when it does come it trickles and there's no use for a sanitary pad. The problem is she's worried that this means she isn't fertile since her menstruation isn't normal. But I read somewhere that the flow isn't much cos
Tyrose
in
Sickle Cell Society
6 years ago
Could this be PMR or Steroid side effect ?
I have been on Pred for 4 years and am reducing from 7 to 6.75 mg again. I had a very strenuous and stressful day on Saturday, going to a funeral and driving home took nearly 2 hours. The longest journey I have done for 3 years is about 15/20 minutes. When I got home I was so tired I needed a rest
I have been on Pred for 4 years and am reducing from 7 to 6.75 mg again. I had a very strenuous and stressful day on Saturday, going to a funeral and driving home took nearly 2 hours. The longest journey I have done for 3 years is about 15/20 minutes. When I got home I was so tired I needed a rest
NursePeggy
in
PMRGCAuk
6 years ago
Anyone with Post ET/MF & Budd Chiari?
I'm 50 and was diagnosed with ET at 22. I took Hydroxyurea and Agreline (sp?) early on but after several DVT's, embolism and PE's I was put on Warafin and Allopurinol and basically monitored until my MF symptoms got "bad enough to treat". About 15 years ago I had blood clots form in my liver and 7
I'm 50 and was diagnosed with ET at 22. I took Hydroxyurea and Agreline (sp?) early on but after several DVT's, embolism and PE's I was put on Warafin and Allopurinol and basically monitored until my MF symptoms got "bad enough to treat". About 15 years ago I had blood clots form in my liver and 7
KADS
in
MPN Voice
6 years ago
CLL Society Weekly Alert
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=5ba78127-52a5-4bc2-af6c-33d6c0c6710a - Website The Basics Living Well with CLL - Hello, Friends and Supporters of the CLL Society. Blood Cancer Awareness Month takes place every September. The CLL Society joins 100s of other nonprofits
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=5ba78127-52a5-4bc2-af6c-33d6c0c6710a - Website The Basics Living Well with CLL - Hello, Friends and Supporters of the CLL Society. Blood Cancer Awareness Month takes place every September. The CLL Society joins 100s of other nonprofits
lankisterguy
Volunteer
in
CLL Support
6 years ago
Useful read for MF patients on or considering Interferon/Pegasys
Lengthy piece of research and I need to try to understand certain aspects better. It discusses impact of Inf on high risk mutations plus impact of multiple mutations re progression to AML. Of interest to Steve, INF reduces high risk mutations such as ASLX1 to same level as other non Driver mutations
Lengthy piece of research and I need to try to understand certain aspects better. It discusses impact of Inf on high risk mutations plus impact of multiple mutations re progression to AML. Of interest to Steve, INF reduces high risk mutations such as ASLX1 to same level as other non Driver mutations
Paul123456
in
MPN Voice
6 years ago
Is Fenbendazole useful in treating CLL?
I'm relatively new to CLL, having been diagnosed a little over a year ago. I'm currently in a Wait and Watch status, but I've been curious about how we are progressing with treatments. In doing a little research unrelated to CLL I ran across an article from a man that had Stage 4 lung cancer and was
I'm relatively new to CLL, having been diagnosed a little over a year ago. I'm currently in a Wait and Watch status, but I've been curious about how we are progressing with treatments. In doing a little research unrelated to CLL I ran across an article from a man that had Stage 4 lung cancer and was
Cobra73
in
CLL Support
6 years ago
Light the Night Australia..Walk Locations
The Australian Leukaemia Foundation includes these special fund raising events between September and November annually. The different lantern colours have special meanings: [i]"Gold to remember loved ones lost to blood cancer, white for those diagnosed themselves and blue to show community support
The Australian Leukaemia Foundation includes these special fund raising events between September and November annually. The different lantern colours have special meanings: [i]"Gold to remember loved ones lost to blood cancer, white for those diagnosed themselves and blue to show community support
AussieNeil
Partner
in
CLL Support
6 years ago
DIAGNOSIS today cll/sll
Got my "official " diagnosis today....even though I full suspected it. I will have a baseline ct scan the end of the month then see my dr in Jan 2019. We will do blood draws every 4 mos. WBC actually reduced from 42.6 to 30.9 in 5 weeks and absolute lymphocytes reduced from 32 to 22. Still high but
Got my "official " diagnosis today....even though I full suspected it. I will have a baseline ct scan the end of the month then see my dr in Jan 2019. We will do blood draws every 4 mos. WBC actually reduced from 42.6 to 30.9 in 5 weeks and absolute lymphocytes reduced from 32 to 22. Still high but
Pat351v
in
CLL Support
6 years ago
Cll and chemo this is my first
I have cll my and now the test show bile duk dilated.my first treatment og chemo is this week my count is 154.000. Is tge bile duck another issue. Will i get sick from chemo i have no fever or night sweat. Sjould i get second opinion before chemo
I have cll my and now the test show bile duk dilated.my first treatment og chemo is this week my count is 154.000. Is tge bile duck another issue. Will i get sick from chemo i have no fever or night sweat. Sjould i get second opinion before chemo
christrom
in
CLL Support
6 years ago
Take part in a user-testing workshop for a new website around clinical trials.
Sense about Science is currently organising a user-testing workshop on a new website around stem cell therapy clinical trials, and they would like someone from our community to join them on the day.
It will be on Tuesday 4th September from 1pm to 3.30pm in their office at 14A, Clerkenwell Green,
Sense about Science is currently organising a user-testing workshop on a new website around stem cell therapy clinical trials, and they would like someone from our community to join them on the day.
It will be on Tuesday 4th September from 1pm to 3.30pm in their office at 14A, Clerkenwell Green,
Paul_Howard
LUPUS UK
in
LUPUS UK
6 years ago
Any positive transplant stories 60+?
I've got a CLL buddy who has just been diagnosed with myelodysplastic syndrome, which is basically bone marrow failure. I'm not clear if this is transformation of her CLL or a secondary malignancy. Either way, she is facing a decision about undergoing an autologous bone marrow transplant. She is in
I've got a CLL buddy who has just been diagnosed with myelodysplastic syndrome, which is basically bone marrow failure. I'm not clear if this is transformation of her CLL or a secondary malignancy. Either way, she is facing a decision about undergoing an autologous bone marrow transplant. She is in
Eagle5327
in
CLL Support
6 years ago
Itp treatment
Hi . I developed Itp 5.5 month ago. I know I have it after a stressful episode of my life 😐 Now , during this time I've been reading articles about Itp. They suggest to wait e years before doing splenectomy. Personally , I know a woman in my relatives who had it during pregnancy and took 2 years
Hi . I developed Itp 5.5 month ago. I know I have it after a stressful episode of my life 😐 Now , during this time I've been reading articles about Itp. They suggest to wait e years before doing splenectomy. Personally , I know a woman in my relatives who had it during pregnancy and took 2 years
Lman96
in
ITP Support Association
6 years ago
CAR T-Cell Developments in Lymphoma Dr. Ian Flinn Highlights
Flinn Highlights CAR T-Cell Developments in Lymphoma by Brandon Scalea Published: Thursday, Aug 09, 2018 - https://www.onclive.com/web-exclusives/flinn-highlights-car-tcell-developments-in-lymphoma?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%20NHL%20CC%20eNews%20%20Zydelig
Flinn Highlights CAR T-Cell Developments in Lymphoma by Brandon Scalea Published: Thursday, Aug 09, 2018 - https://www.onclive.com/web-exclusives/flinn-highlights-car-tcell-developments-in-lymphoma?eKey=bGVua2Vja0Bjb21jYXN0Lm5ldA==&utm_medium=email&utm_campaign=ONCSS%20NHL%20CC%20eNews%20%20Zydelig
lankisterguy
Volunteer
in
CLL Support
6 years ago
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