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California wildfires and stress/- update
I live in Northern California and have been enduring power blackouts for weeks. Today we have the 4th blackout in 3 weeks and are being told the blackouts could go on go another month as there is no rain in the forecast. Thank goodness no fires have started near me and I haven’t had to evacuate!
I live in Northern California and have been enduring power blackouts for weeks. Today we have the 4th blackout in 3 weeks and are being told the blackouts could go on go another month as there is no rain in the forecast. Thank goodness no fires have started near me and I haven’t had to evacuate!
Mstiles
in
PMRGCAuk
5 years ago
New Blog from Dr Bronstein re alzeimers medications
He states "I do not claim to know the cure for Alzheimer’s disease, but I do know that Aricept and other Alzheimer’s medications should not be used". https://www.drbrownstein.com/22871-2/?inf_contact_key=d0e96b85cfad51c5d850b7483f1888a7d18a532c4142cb79caf2b269de1401fa
He states "I do not claim to know the cure for Alzheimer’s disease, but I do know that Aricept and other Alzheimer’s medications should not be used". https://www.drbrownstein.com/22871-2/?inf_contact_key=d0e96b85cfad51c5d850b7483f1888a7d18a532c4142cb79caf2b269de1401fa
shaws
Administrator
in
Thyroid UK
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
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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
CURCUMIN? – IS IT THE NEXT BEST THING...?
Post by MPN-MATE Admin » Wed Sep 25, 2019 10:29 am Hey all my MPN colleagues & friends... Thought that you might all enjoy a quick scan of this article on Curcumin, that seems to suggest that its powers might be just what the Pharmacist decided not to order... because it is possible much less expensive
Post by MPN-MATE Admin » Wed Sep 25, 2019 10:29 am Hey all my MPN colleagues & friends... Thought that you might all enjoy a quick scan of this article on Curcumin, that seems to suggest that its powers might be just what the Pharmacist decided not to order... because it is possible much less expensive
socrates_8
in
MPN Voice
5 years ago
NEW HOPE FOR AML...
Post by MPN-MATE Admin » Wed Sep 25, 2019 2:05 am Hey everyone... :-) This article is a tad tough to read through because of all the terminologies (jargon) used etc... However, it is not all that difficult to follow the gist of these findings if one treats it more like an analogy of some mystery and
Post by MPN-MATE Admin » Wed Sep 25, 2019 2:05 am Hey everyone... :-) This article is a tad tough to read through because of all the terminologies (jargon) used etc... However, it is not all that difficult to follow the gist of these findings if one treats it more like an analogy of some mystery and
socrates_8
in
MPN Voice
5 years ago
Jakavi a Janus kinase inhibitor ; does anyone know about this Med for the treatment of CLL
I met someone in the waiting room at MDA and he told me about this medication . He has CLL was Watch a wait a couple of years ago 2011 on this since 2013. He is on a clinical trial. It’s approved for myelofibrosis, but now being used for CLL.
I met someone in the waiting room at MDA and he told me about this medication . He has CLL was Watch a wait a couple of years ago 2011 on this since 2013. He is on a clinical trial. It’s approved for myelofibrosis, but now being used for CLL.
LovecuresCLL
in
CLL Support
5 years ago
CLL Trials Updates from European Haematology Association Meeting 2019
Patrick Thornton, MD, Beaumont Hospital, Dublin, Ireland, tells us about some of the excellent CLL updates presented at the 24th Congress of the European Hematology Association (EHA) 2019, held in Amsterdam. Dr Thornton discusses a variety of updates, such as bringing novel agents into the frontline
Patrick Thornton, MD, Beaumont Hospital, Dublin, Ireland, tells us about some of the excellent CLL updates presented at the 24th Congress of the European Hematology Association (EHA) 2019, held in Amsterdam. Dr Thornton discusses a variety of updates, such as bringing novel agents into the frontline
Jm954
Administrator
in
CLL Support
5 years ago
Troponin levels elevated
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Jalola
in
British Heart Foundation
5 years ago
Bone Marrow Transplant.
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Seifert_09
in
AMN EASIER
5 years ago
Parents Advisory Board
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
fightald
Administrator
in
Parents of ALD Newborns
5 years ago
Flu vaccine while taking 20mg Jakafi
Has anyone here gotten the flu vaccine this year while on 20mg Jakafi
Has anyone here gotten the flu vaccine this year while on 20mg Jakafi
rkhabtec
in
MPN Voice
5 years ago
Ibrutinib Shown to Cross the Blood-Brain Barrier in CNS Lymphoma
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary to get a good concentration in the CSF. More information here: https://www.cancertherapyadvisor.com/home/cancer-topics/lymphoma/cns-lymphoma-ibrutinib-shown-to-cross-blood-brain-barrier
Jm954
Administrator
in
CLL Support
5 years ago
Update on previous post but cannot find it 🙄
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Pamela60
in
PMRGCAuk
5 years ago
Bi clonal CLL
When diagnosed with CLL in May 2018, the FISH test reported I have 2 different B cells that are multiplying, making my CLL bi clonal instead of mono clonal. I wish I could get feedback on others results of their bi clonal CLL. The test results said that my time to treatment may be shorter, but nothing
When diagnosed with CLL in May 2018, the FISH test reported I have 2 different B cells that are multiplying, making my CLL bi clonal instead of mono clonal. I wish I could get feedback on others results of their bi clonal CLL. The test results said that my time to treatment may be shorter, but nothing
wcm242
in
CLL Support
5 years ago
Any news,trials or progress on use of CAR T-cell therapy for Myelofibrosis or related conditions?
A true breakthrough in several diseases , especially cancers eg Leukemia. Costly ( $1m per treatment) but costs will decline . This is the use of your own (tweaked) immune suppression systems to fight cancers.( see TED Talks etc).
A true breakthrough in several diseases , especially cancers eg Leukemia. Costly ( $1m per treatment) but costs will decline . This is the use of your own (tweaked) immune suppression systems to fight cancers.( see TED Talks etc).
Innessant
in
MPN Voice
5 years ago
Critical Molecular Pathways in CLL Therapy
This is an overview of where we are in CLL treatment and where the research may be most needed at this point in time. Lengthy, with good illus. and delineates targets of current treatments. https://molmed.biomedcentral.com/articles/10.1186/s10020-018-0001-1 Sorry, if this is a duplicate. Conclusion
This is an overview of where we are in CLL treatment and where the research may be most needed at this point in time. Lengthy, with good illus. and delineates targets of current treatments. https://molmed.biomedcentral.com/articles/10.1186/s10020-018-0001-1 Sorry, if this is a duplicate. Conclusion
cllady01
Volunteer
in
CLL Support
5 years ago
One Day at a Time
Hi CLL People, It's been a while since I posted (4 years while to be more precise) and in that time I've been doing exactly as above - taking it 1 day at a time. I have little to report - my bloods have remained pretty constant and my hospital doctor (I have no Consultant) said at our last meeting that
Hi CLL People, It's been a while since I posted (4 years while to be more precise) and in that time I've been doing exactly as above - taking it 1 day at a time. I have little to report - my bloods have remained pretty constant and my hospital doctor (I have no Consultant) said at our last meeting that
mister_Ian_NE
in
CLL Support
5 years ago
“CLL & Heartburn” ??
Weird question but ... the original way I was diagnosed with CLL was because I was having some very strange “heart burn” type of symptoms. And my doctor did a range of test - thyroid, barium swallow & a CBC - everything came back ok except a small amount of acid reflux in the barium swallow & my WCC
Weird question but ... the original way I was diagnosed with CLL was because I was having some very strange “heart burn” type of symptoms. And my doctor did a range of test - thyroid, barium swallow & a CBC - everything came back ok except a small amount of acid reflux in the barium swallow & my WCC
Meamiaam10
in
CLL Support
5 years ago
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