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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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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
Accessing medication without a license in UK
I am aware this medication is available for AML
leukaemia
. And if licensed for cholangiocarcinoma in other countries. Our oncologist is happy to prescribe this medication off license. Our oncologist is trying to unfortunately other than USA we have not been successful.
I am aware this medication is available for AML
leukaemia
. And if licensed for cholangiocarcinoma in other countries. Our oncologist is happy to prescribe this medication off license. Our oncologist is trying to unfortunately other than USA we have not been successful.
lyndsw9
in
British Liver Trust
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
Lady in UK misdiagnosed with leukaemia when she had Sweet's syndrome
A LADY IN TIVERTON, DEVON, UK, WAS MISDIAGNOSED WITH
LEUKAEMIA
CUTIS/ACUTE MYELOID
LEUKAEMIA
CUTIS AND GIVEN INTENSIVE CHEMOTHERAPY, WHEN IN FACT, SHE HAD SWEET'S SYNDROME.
A LADY IN TIVERTON, DEVON, UK, WAS MISDIAGNOSED WITH
LEUKAEMIA
CUTIS/ACUTE MYELOID
LEUKAEMIA
CUTIS AND GIVEN INTENSIVE CHEMOTHERAPY, WHEN IN FACT, SHE HAD SWEET'S SYNDROME.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
5 years ago
Great North Run
In 2016, my daughter was diagnosed with
leukaemia
. She started couch to 5k in January this year. We trained when we could and gradually increased our distance after graduating. Today our soft shoe shuffle finally paid off. For those of you on the C25K programme, stick in. You can do it!
In 2016, my daughter was diagnosed with
leukaemia
. She started couch to 5k in January this year. We trained when we could and gradually increased our distance after graduating. Today our soft shoe shuffle finally paid off. For those of you on the C25K programme, stick in. You can do it!
kirble
Graduate
in
Couch to 5K
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
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
“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
Blood work with a possible change in doctor's
I don't post on here very often so here goes. I started a new GP and Oncologist/Hematologist this year. Prior doctor allowed phlebotomy when HCT was at 44.6. My last phlebotomy was done in January and the one before that was in October. Before that I was getting them on the average of every 6 to 8
I don't post on here very often so here goes. I started a new GP and Oncologist/Hematologist this year. Prior doctor allowed phlebotomy when HCT was at 44.6. My last phlebotomy was done in January and the one before that was in October. Before that I was getting them on the average of every 6 to 8
Alex9621
in
MPN Voice
5 years ago
Test result meaning
Just a question on of my results. The last two land shows a lot of things out of whack. But one is anion gap with a reading of 2 and LL which is critical (panic). I was diagnosed with CLL in February 2018. Started Gayza in September thru December. Was about 16 treatments. Labs did not improve. I have
Just a question on of my results. The last two land shows a lot of things out of whack. But one is anion gap with a reading of 2 and LL which is critical (panic). I was diagnosed with CLL in February 2018. Started Gayza in September thru December. Was about 16 treatments. Labs did not improve. I have
Mamawof25
in
CLL Support
5 years ago
LGL Leukaemia
Has anyone been diagnosed with large granular lymphocytic
leukaemia
, if so I'd love to hear from you.
Has anyone been diagnosed with large granular lymphocytic
leukaemia
, if so I'd love to hear from you.
GrannyTWest
in
CLL Support
5 years ago
Help with anemia
I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
Jerrymohler
in
MPN Voice
5 years ago
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