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UK CLL Forum *Follow-Up Survey for UK CLL Patients regarding the support you're getting- Please complete if you can.
They have partnered with CLL Support (who moderate this site) and
Leukaemia
Care to promote a survey which will inform future planning .
They have partnered with CLL Support (who moderate this site) and
Leukaemia
Care to promote a survey which will inform future planning .
Jm954
Administrator
in
CLL Support
4 years ago
Sign up to our weekly newsletter and get all our advice and recommendations for self-isolation straight to your inbox
/latest-from-
leukaemia
-care/blog/self-isolation-shielding-for-people-with-blood-cancers-faqs/
/latest-from-
leukaemia
-care/blog/self-isolation-shielding-for-people-with-blood-cancers-faqs/
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Sheilding letter - I got one
The UK CLL Forum (UK NHS CLL Clinicians, researchers and scientists) have discussed the shielding definition issue with patient groups (CLL Support and
Leukaemia
Care). We have jointly prepared advice which provides detailed guidance on shielding and we hope you will find it useful.
The UK CLL Forum (UK NHS CLL Clinicians, researchers and scientists) have discussed the shielding definition issue with patient groups (CLL Support and
Leukaemia
Care). We have jointly prepared advice which provides detailed guidance on shielding and we hope you will find it useful.
TheFlyer
in
CLL Support
4 years ago
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Poikilocytosis and Burr cells
I have CLL, the slow moving type since 2013; am 68 yrs old. My blood work is not that much out of the normal range and I feel fine. Had my standard checkup last week with a new oncologist who order a standard CBC plus a couple of other new blood tests; testing for the existance of poikilocytosis cells
I have CLL, the slow moving type since 2013; am 68 yrs old. My blood work is not that much out of the normal range and I feel fine. Had my standard checkup last week with a new oncologist who order a standard CBC plus a couple of other new blood tests; testing for the existance of poikilocytosis cells
markjeep51
in
CLL Support
4 years ago
Introduction
Hello Everyone I was admitted to hospital with a suspected pneumonia 3 months after the birth of my second child and following a blood test was told I either had HIV or
Leukaemia
. Turns out it was CLL, which at 36 was a bit of a shock.
Hello Everyone I was admitted to hospital with a suspected pneumonia 3 months after the birth of my second child and following a blood test was told I either had HIV or
Leukaemia
. Turns out it was CLL, which at 36 was a bit of a shock.
Direstraits12
in
CLL Support
4 years ago
Hydroxyurea and Zoloft
Hi everyone, Has anyone experienced using hydroxyurea with Zoloft ? Does it have any interaction? My mom is going through anxiety due to some family problems and I was thinking it would be beneficial for her to start using Zoloft to lower her stress level but I’m not sure if it can have any side effect
Hi everyone, Has anyone experienced using hydroxyurea with Zoloft ? Does it have any interaction? My mom is going through anxiety due to some family problems and I was thinking it would be beneficial for her to start using Zoloft to lower her stress level but I’m not sure if it can have any side effect
Lovelymom4
in
MPN Voice
4 years ago
Webinar - Coronavirus and chronic myeloid leukaemia (CML) with Professor Steve O'Brien
Video of
Leukaemia
Care CML and COVID -19 webinar RECORDED LIVE on 23/4/2020. INFORMATION CORRECT AS OF THIS DATE.
Video of
Leukaemia
Care CML and COVID -19 webinar RECORDED LIVE on 23/4/2020. INFORMATION CORRECT AS OF THIS DATE.
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Diagnosis
My son was diagnosed with this whilst fight acute myeloid
leukaemia
unfortunately he passed away last July so I cannot determine the genetic element it didn’t seem important at the time hes was diagnosed with liver biopsy .
My son was diagnosed with this whilst fight acute myeloid
leukaemia
unfortunately he passed away last July so I cannot determine the genetic element it didn’t seem important at the time hes was diagnosed with liver biopsy .
Christie22
in
Haemochromatosis Society UK
4 years ago
Hepcidin Mimetic PTG-300 Shows Early Promise in Polycythemia Vera
"PTG-300 is a big deal, and it is something different," said study investigator, Ronald Hoffman, MD, of The Icahn School of Medicine at Mount Sinai. "It was unanticipated that a regulator of iron metabolism could be used to treat patients with PV. This is the merging of 2 fields: science and hematology
"PTG-300 is a big deal, and it is something different," said study investigator, Ronald Hoffman, MD, of The Icahn School of Medicine at Mount Sinai. "It was unanticipated that a regulator of iron metabolism could be used to treat patients with PV. This is the merging of 2 fields: science and hematology
Manouche
in
MPN Voice
4 years ago
PV with high MCV,high RDW ,all other parameters normal - what does it mean ?
Was diagnosed with PV in 2019 in February 2019. Was put on Hydroxyurea. Now in February my blood reports are looking much better with all other parameters normal , but however only my MCV (108.7) and MCH (37.5) are higher than before .Also the RDW (14.9) is higher than before. All other blood parameters
Was diagnosed with PV in 2019 in February 2019. Was put on Hydroxyurea. Now in February my blood reports are looking much better with all other parameters normal , but however only my MCV (108.7) and MCH (37.5) are higher than before .Also the RDW (14.9) is higher than before. All other blood parameters
Iwillwin123
in
MPN Voice
4 years ago
Sod the underpants
That’s better, looks less like underwear on my face. Got the hang of it now, Going to have a go at the other design tomorrow.
That’s better, looks less like underwear on my face. Got the hang of it now, Going to have a go at the other design tomorrow.
MissKota
in
Lung Conditions Community Forum
4 years ago
New to Essential Thrombocythemia
I am a 44yr old woman and was diagnosed in February 2020 with essential thrombocythemia even though my bone marrow test and bloodwork said otherwise and no sign of MPN per the pathology report. Due to my high platelets my dr has started to treat me with hydroxyurea 500mg once daily for ET. On my last
I am a 44yr old woman and was diagnosed in February 2020 with essential thrombocythemia even though my bone marrow test and bloodwork said otherwise and no sign of MPN per the pathology report. Due to my high platelets my dr has started to treat me with hydroxyurea 500mg once daily for ET. On my last
Beths3
in
MPN Voice
4 years ago
Phyllis George dies of polycythemia Vera at age 70
https://www.nkytribune.com/2020/05/phyllis-george-former-miss-america-and-first-lady-of-kentucky-dies-of-rare-blood-disease-at-age-70/ George was diagnosed with polycythemia vera, a rare blood cancer that was diagnosed 35 years ago
https://www.nkytribune.com/2020/05/phyllis-george-former-miss-america-and-first-lady-of-kentucky-dies-of-rare-blood-disease-at-age-70/ George was diagnosed with polycythemia vera, a rare blood cancer that was diagnosed 35 years ago
Manouche
in
MPN Voice
4 years ago
Herpes infection within the body,couses platelets to go down even on nplate?
Hi there. My wife is diagnosed with ITP 2 years ago,she is on nplate and has her ups and down with increasing and decreasing the dose to stay round 100, she never had any bleading even when the platelets were 3000. Every time she gets a herpes on her lips or nose her platelets dive down and she has to
Hi there. My wife is diagnosed with ITP 2 years ago,she is on nplate and has her ups and down with increasing and decreasing the dose to stay round 100, she never had any bleading even when the platelets were 3000. Every time she gets a herpes on her lips or nose her platelets dive down and she has to
Jon1
in
ITP Support Association
4 years ago
Video - The Blood Cancer Alliance webinar on COVID-19 and blood cancer
during shielding This was recorded on Tuesday 12th May at 4pm and can be watched on the Facebook link here: https://www.facebook.com/LeukaemiaCare/videos/242477067005955/ his webinar is hosted by the Blood Cancer Alliance, a coalition of charities supporting people living with blood cancer (including
Leukaemia
during shielding This was recorded on Tuesday 12th May at 4pm and can be watched on the Facebook link here: https://www.facebook.com/LeukaemiaCare/videos/242477067005955/ his webinar is hosted by the Blood Cancer Alliance, a coalition of charities supporting people living with blood cancer (including
Leukaemia
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Shielding, update
I'm JAK2+ PV under control... I got my letter 5 weeks ago and have been staying in besides walking my dog in remote fields etc, keeping well away from humans. This morning I decided to write to my consultant asking for confirmation re shielding, this was his reply.. "No, according to our Departmental
I'm JAK2+ PV under control... I got my letter 5 weeks ago and have been staying in besides walking my dog in remote fields etc, keeping well away from humans. This morning I decided to write to my consultant asking for confirmation re shielding, this was his reply.. "No, according to our Departmental
shiftzz
in
MPN Voice
4 years ago
BMB (Bone Marrow Biopsy)
I had a series of blood tests over the course of 12 months between gp and then my referral into my local hospital haemotology department . As all tests turned up negative for mutations, while my platelets continued to stay up/increase Haemotologist explained BMB (Bone Marrow Biopsy) was necessary
I had a series of blood tests over the course of 12 months between gp and then my referral into my local hospital haemotology department . As all tests turned up negative for mutations, while my platelets continued to stay up/increase Haemotologist explained BMB (Bone Marrow Biopsy) was necessary
Woodlandgarden
in
MPN Voice
4 years ago
Ibutrinib plus venetoclax?
As I told you my brother is in the rump up with venetoclax. Now he is in 100 mg now. This month he start relapsing his treatment with imbruvica monotherapy. He was 18 months with very good results with imbruvica, but as I said his cll start relapsing. And his doctors consider add venetoclax. He put
As I told you my brother is in the rump up with venetoclax. Now he is in 100 mg now. This month he start relapsing his treatment with imbruvica monotherapy. He was 18 months with very good results with imbruvica, but as I said his cll start relapsing. And his doctors consider add venetoclax. He put
Cgr2018
in
CLL Support
4 years ago
CHANGE OF DATE for the webinar for MPN patients relating to government guidance on COVID-19
We would like to thank
Leukaemia
Care for their support, help and assistance with this webinar.
We would like to thank
Leukaemia
Care for their support, help and assistance with this webinar.
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Venetoclax, acalabrutnib, obitunzimab
Good morning all! Hope you are all doing well today. I’ve been reading a lot, but not posted much, so hear it goes! I have b en struggling with fatigue for years, I will not go through all the details of the past 6 years, but it’s been a ride, I only found out last year I have Cll, 11q del (although
Good morning all! Hope you are all doing well today. I’ve been reading a lot, but not posted much, so hear it goes! I have b en struggling with fatigue for years, I will not go through all the details of the past 6 years, but it’s been a ride, I only found out last year I have Cll, 11q del (although
Tton46
in
CLL Support
4 years ago
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