Search
Search
About
Log in
Join
Experiences with
Mast cell leukaemia
Posts
Communities
3,564 public posts
Filter results
CLL Aussie voices study - last call to add your voice to the PEEK study
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
This is a final call for Australians with CLL, their carers and family members to add their voice and register for the CLL PEEK study, conducted by the Centre for Community Driven Research ( CC-DR).
To register, email administration@cc-dr.org or go to www.cc-dr.org/peek/register/2020aucll
Catherine
AussieNeil
Partner
in
CLL Support
4 years ago
Awake worrying about your CLL? Stop It! Apply for a FREE online 2nd Opinion with a top CLL Expert.
CLL Society Expert Access™ Program: Awake worrying about your CLL? Apply for a FREE online 2nd Opinion with a top CLL Expert! Here at the CLL Society, we believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
CLL Society Expert Access™ Program: Awake worrying about your CLL? Apply for a FREE online 2nd Opinion with a top CLL Expert! Here at the CLL Society, we believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Cause of Secondary PV
I was recently diagnosed with secondary PV. Although I quit cigarettes 10 years ago, I have continued to smoke marijuana for pain management. Would this be enough for cause?
I was recently diagnosed with secondary PV. Although I quit cigarettes 10 years ago, I have continued to smoke marijuana for pain management. Would this be enough for cause?
Green1445
in
MPN Voice
4 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
"The Future of CAR-T Therapy: Can CAR-T Cure CLL?” Don’t miss the excitement Nov 17 with Dr. Fraietta, a true pioneer in CAR-T therapy!
CLL Society Webinar: Prepare to be amazed! Nov. 17th CAR-T Webinar "The Future of CAR-T Therapy: Can CAR-T Cure CLL?” CAR-T therapy is not yet approved in CLL. However, if you were to receive it in the future a living drug would be made from your own t-cells, re-engineered to recognize surface markers
CLL Society Webinar: Prepare to be amazed! Nov. 17th CAR-T Webinar "The Future of CAR-T Therapy: Can CAR-T Cure CLL?” CAR-T therapy is not yet approved in CLL. However, if you were to receive it in the future a living drug would be made from your own t-cells, re-engineered to recognize surface markers
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Biopsy results
Hi, my boyfriend has CLL and is struggling with his hemoglobin and neutropenia. His numbers are not getting better. Doctors had to give him multiple blood transfusions and neupogen shot. Even with those, the numbers remain low. He is under Venetoclax treatment. Next week will have a bone marrow biopsy
Hi, my boyfriend has CLL and is struggling with his hemoglobin and neutropenia. His numbers are not getting better. Doctors had to give him multiple blood transfusions and neupogen shot. Even with those, the numbers remain low. He is under Venetoclax treatment. Next week will have a bone marrow biopsy
Gile
in
CLL Support
4 years ago
CLL cells accumulate genetic aberrations prior to the first therapy even in outwardly inactive disease phase
No definite conclusions from this paper about genetic evolution and disease drivers but interesting.
[i]"Most CLL cases are diagnosed during the inactive disease phase. Clonal evolution is considered a key factor in CLL progression and relapse after treatment. A large number of frequently mutated
No definite conclusions from this paper about genetic evolution and disease drivers but interesting.
[i]"Most CLL cases are diagnosed during the inactive disease phase. Clonal evolution is considered a key factor in CLL progression and relapse after treatment. A large number of frequently mutated
Jm954
Administrator
in
CLL Support
4 years ago
jak-2 mutated
could I ask if anyone knows about jak2 mutated postive tested has i still not right sure what it means its on my letters with the condition ive got essential thrombocythaemia which could get aggressive into thrombosis but also says could progess to myelofibrosis or acute myeloid lumkemia ?
could I ask if anyone knows about jak2 mutated postive tested has i still not right sure what it means its on my letters with the condition ive got essential thrombocythaemia which could get aggressive into thrombosis but also says could progess to myelofibrosis or acute myeloid lumkemia ?
Jody00
in
MPN Voice
4 years ago
Question for those living with MF
I was diagnosed in August and have been on Ruxolitinib for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87. Platelets last week were 117, but today this had
I was diagnosed in August and have been on Ruxolitinib for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87. Platelets last week were 117, but today this had
Otterfield
in
MPN Voice
4 years ago
Gene SRSF2
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
ktaylor5563
in
MPN Voice
4 years ago
anti parietal cell antibody test For b12
anti parietal cell antibody test For b12 is it worth ?
anti parietal cell antibody test For b12 is it worth ?
Ulrich-vi
in
Pernicious Anaemia Society
4 years ago
Anyone tried Claritin for pain?
A week or so ago I posted about knee and wrist pain with MF. The pain in my knees has got worse and often now sort of radiates to my thighs and shins. I did some googling (though I never google the scary stuff about MF!) and found some suggestion that Claritin (the antihistamine Loratadine) might be
A week or so ago I posted about knee and wrist pain with MF. The pain in my knees has got worse and often now sort of radiates to my thighs and shins. I did some googling (though I never google the scary stuff about MF!) and found some suggestion that Claritin (the antihistamine Loratadine) might be
Otterfield
in
MPN Voice
4 years ago
MBL numbers going up
Just had my yearly labs and my WBC increased from 10 to19 and my absolute lymphocytes 7.6 to 12. Everythng else looked pretty good, normal range. Could this be a blip (just got over bad a-topical dermatitis[i] [/i] on three spots for weeks
before resolving a week before labs. Any cause for concern
Just had my yearly labs and my WBC increased from 10 to19 and my absolute lymphocytes 7.6 to 12. Everythng else looked pretty good, normal range. Could this be a blip (just got over bad a-topical dermatitis[i] [/i] on three spots for weeks
before resolving a week before labs. Any cause for concern
Freeskier989
in
CLL Support
4 years ago
Green Tea Extract and Curcumin
Hi All - I’ve been taking green tea extract and curcumin capsules daily since I was diagnosed 18 months ago. I have no symptoms and my blood levels have been very stable. Has anyone had experience with those two supplements?
Hi All - I’ve been taking green tea extract and curcumin capsules daily since I was diagnosed 18 months ago. I have no symptoms and my blood levels have been very stable. Has anyone had experience with those two supplements?
LouisAmbrose
in
CLL Support
4 years ago
Richter's Syndrome
Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback from others that have gone though it
Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback from others that have gone though it
ishudderz
in
CLL Support
4 years ago
A webinar for patients - practical workshop 'Coping with Fatigue' Oct 28th at 4pm
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
HAIRBEAR_UK
Founder Admin
in
CLL Support
4 years ago
Life after transplant
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
KAS8
in
CLL Support
4 years ago
Been taking Exjade to my detriment
Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am taking a trial drug MANIFEST-CPI0601 as well as rux so decided to give it a go. My mistake. This drug crashed my platelets from around 70 to 11 with
Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am taking a trial drug MANIFEST-CPI0601 as well as rux so decided to give it a go. My mistake. This drug crashed my platelets from around 70 to 11 with
skodaguy
in
MPN Voice
4 years ago
Re: ALLELE BURDEN FREQUENCIES IN MPNS IN AUSTRALIA?
Post by MPN-MATE Admin » Fri Oct 02, 2020 3:44 pm
[i]UPDATE COMING...[/i]
Afternoon everyone, The following is an UPDATE to my seeking answers about MPN Patients being enabled to obtain and order "Allele Burden Frequency (ABF)" Testing for all MPN Driver mutations. Allan, (one of our MATES members
Post by MPN-MATE Admin » Fri Oct 02, 2020 3:44 pm
[i]UPDATE COMING...[/i]
Afternoon everyone, The following is an UPDATE to my seeking answers about MPN Patients being enabled to obtain and order "Allele Burden Frequency (ABF)" Testing for all MPN Driver mutations. Allan, (one of our MATES members
socrates_8
in
MPN Voice
4 years ago
Myelodyplastic Syndrome (MDS)
Hi. In my previous post I wrote about reaching a point 18months after completing FCR where my bone marrow stopped producing red cells. This got a diagnosis of MDS which was expected to be irreversible. After several months and 6 blood transfusions I'm thrilled to say my marrow is back in action and
Hi. In my previous post I wrote about reaching a point 18months after completing FCR where my bone marrow stopped producing red cells. This got a diagnosis of MDS which was expected to be irreversible. After several months and 6 blood transfusions I'm thrilled to say my marrow is back in action and
Jotame
in
CLL Support
4 years ago
Vitamin D and Green Tea
Big thanks to this site as I’ve found a new Haematologist recommended here with whom I am 😊 He suggested three cups of Green Tea per day so I’ve included it in my everyday life and will be very interested to see blood test results next year. I have one early morning then make up a two bag mug which
Big thanks to this site as I’ve found a new Haematologist recommended here with whom I am 😊 He suggested three cups of Green Tea per day so I’ve included it in my everyday life and will be very interested to see blood test results next year. I have one early morning then make up a two bag mug which
YelvertonDevon
in
CLL Support
4 years ago
1
...
60
61
62
...
100
Next page
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1699 results
MPN Voice
870 results
PMRGCAuk
201 results
View top 10 communities
Sort by
Most Relevant
Newest