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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
Why did I get CLL? Clearing up confusion between correlation and causation
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
AussieNeil
Partner
in
CLL Support
5 years ago
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My exposure to Ethylene Oxide.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
Bogi1
in
CLL Support
5 years ago
Dr Mary Ann Anderson on CLL, Venetoclax and future trends in CLL management
Venetoclax is the culmination of a research discovery made in Australia's Walter & Eliza Hall Institute in 1989. [i]Dr Mary Ann Anderson is one of only a few researchers who has seen their work in the lab translate to a frontline therapy for blood cancer. [/i] [i]“Venetoclax targets a protein which
Venetoclax is the culmination of a research discovery made in Australia's Walter & Eliza Hall Institute in 1989. [i]Dr Mary Ann Anderson is one of only a few researchers who has seen their work in the lab translate to a frontline therapy for blood cancer. [/i] [i]“Venetoclax targets a protein which
AussieNeil
Partner
in
CLL Support
5 years ago
PV
Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a venesection every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have
Hi this is my first post! I am 42 and was diagnosed with PV when I was 35. I think I probably had it at least 2 years prior to my diagnosis. I have a venesection every 8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy which showed myelofibrosis. I have
MamPRV
in
MPN Voice
5 years ago
Newly diagnosed too, stage 0
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain
patilin
in
CLL Support
5 years ago
Richter Transformation possible?
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms: - enlarged spleen, quite massive, developed quite quick within one year - always feel hot (sweat) - lose weight - about 2 kg in 6 months - low platelet -77 ( last
writepa
in
CLL Support
5 years ago
Dr. Siddiqi on Rationale for the TRANSCEND CAR-T CLL 004 Trial in CLL/SLL
[i]Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephenson Lymphoma Center, associate clinical professor, Department of Hematology & Hematopoietic Cell Transplantation, and a hematologist/oncologist at City of Hope, discusses the rationale for the phase I/II TRANSCEND CLL 004
[i]Tanya Siddiqi, MD, director, Chronic Lymphocytic Leukemia Program, Toni Stephenson Lymphoma Center, associate clinical professor, Department of Hematology & Hematopoietic Cell Transplantation, and a hematologist/oncologist at City of Hope, discusses the rationale for the phase I/II TRANSCEND CLL 004
AussieNeil
Partner
in
CLL Support
5 years ago
Starting Treatment
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
12Caine12
in
CLL Support
5 years ago
Painful toes
Hi, I have recently been diagnosed with cml, not seen a specialist yet though it’s been 6 weeks since diagnosis via my hiv specialist who has been keeping a very close eye on my blood tests and had a Leukemia test done middle of August (October now). I have so many questions that I know can’t be answered
Hi, I have recently been diagnosed with cml, not seen a specialist yet though it’s been 6 weeks since diagnosis via my hiv specialist who has been keeping a very close eye on my blood tests and had a Leukemia test done middle of August (October now). I have so many questions that I know can’t be answered
Scream-N-kick
in
Leukaemia Support
5 years ago
World Mental Health Day 2019
Happy thursday all, Today is World Mental Health Day. A blood cancer diagnosis can take its toll not just on your body, but on your mind too. Here at LC, we have a number of resources to support you: - Our nurse-led helpline is open for anybody affected by a blood cancer diagnosis. To understanding what
Happy thursday all, Today is World Mental Health Day. A blood cancer diagnosis can take its toll not just on your body, but on your mind too. Here at LC, we have a number of resources to support you: - Our nurse-led helpline is open for anybody affected by a blood cancer diagnosis. To understanding what
NicoleLeukaemiaCare
in
Leukaemia Support
5 years ago
MD Anderson/Mayo or Peter MacCallum for treatment?
Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow. The FISH test is not available yet until next week so the treatment plan is also not available. But seem that he’s on Stage IV under RAI classification
Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow. The FISH test is not available yet until next week so the treatment plan is also not available. But seem that he’s on Stage IV under RAI classification
writepa
in
CLL Support
5 years ago
Global blood supply runs low - and that's a worry for those with CLL
A study funded by the National Institutes of Health reports that [i]"Nearly two-thirds of countries worldwide have an insufficient supply of blood for transfusion, according to findings from a recent modeling study including 195 countries and territories.[/i] [i]:[/i] [i]Shortages are attributable to
A study funded by the National Institutes of Health reports that [i]"Nearly two-thirds of countries worldwide have an insufficient supply of blood for transfusion, according to findings from a recent modeling study including 195 countries and territories.[/i] [i]:[/i] [i]Shortages are attributable to
AussieNeil
Partner
in
CLL Support
5 years ago
What is ERIC and Why Should We Care?
Dr. Stamatopolous is one of its directors and in these short videos he talks about ERIC in general and its first big meeting. He then discusses his research on the “cognitive dissonance” we all know so well when we are diagnosed with an incurable cancer and then told we need no treatment. Next he explains
Dr. Stamatopolous is one of its directors and in these short videos he talks about ERIC in general and its first big meeting. He then discusses his research on the “cognitive dissonance” we all know so well when we are diagnosed with an incurable cancer and then told we need no treatment. Next he explains
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
High platelet counts as with polycythemia Vera treatments
Does anyone have a doctor that allows high platelets as they are caused by the blood draws to control the HCT and the rest
Does anyone have a doctor that allows high platelets as they are caused by the blood draws to control the HCT and the rest
Hidden
in
MPN Voice
5 years ago
Night sweats ONION SCENT
My wife has noted that my night sweats come with a strong onion scent in the air while I sleep ..I detected it on my clothes if I work and get a lather going I have smelled it also this is a new one on me I shower 2 times a day and am embarrassed by the New aroma I hope
My wife has noted that my night sweats come with a strong onion scent in the air while I sleep ..I detected it on my clothes if I work and get a lather going I have smelled it also this is a new one on me I shower 2 times a day and am embarrassed by the New aroma I hope
lacroixx1
in
CLL Support
5 years ago
How did this happen ?
Just diagnosed with Essential Thrombocythaemia just cant' believe what is happening. Had bowel cancer (2015 surgery) and am still being monitored for it(hopefully last scan Dec 2019)! Going to local hospital tomorrow to collect 'Chemo' capsules-am very anxious about taking them but I have to-(also taking
Just diagnosed with Essential Thrombocythaemia just cant' believe what is happening. Had bowel cancer (2015 surgery) and am still being monitored for it(hopefully last scan Dec 2019)! Going to local hospital tomorrow to collect 'Chemo' capsules-am very anxious about taking them but I have to-(also taking
Ratton726
in
MPN Voice
5 years ago
Was my Jakafi dosage lowered inappropriatelyand need to be raised?
I have stage 3 myelofibrosis, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my ruxolitinib to 10 mg cause my platelets went down. Now I feel so much heat in my body that I can't tolerate it anymore feel like I am burning
I have stage 3 myelofibrosis, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my ruxolitinib to 10 mg cause my platelets went down. Now I feel so much heat in my body that I can't tolerate it anymore feel like I am burning
Boriqua
in
MPN Voice
5 years ago
Patient Advisory Board of patients (and caregivers) with Warm Autoimmune Hemolytic Anemia (wAIHA)
Hello, I wanted to give all of you a heads up (and a head start) on an exciting opportunity that Savvy Co-op is going to release on Monday. The co-op has an opportunity to build an advisory board of patients (and caregivers) with Warm Autoimmune Hemolytic Anemia (wAIHA). wAIHA can often present
Hello, I wanted to give all of you a heads up (and a head start) on an exciting opportunity that Savvy Co-op is going to release on Monday. The co-op has an opportunity to build an advisory board of patients (and caregivers) with Warm Autoimmune Hemolytic Anemia (wAIHA). wAIHA can often present
lankisterguy
Volunteer
in
CLL Support
5 years ago
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