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Survey for the MOSAICC Study - we need your help
Leukaemia
and Lymphoma NI will fund the collection of DNA and RNA for genetic analysis. Later studies will enable the team to explore how lifestyle, occupational and environmental factors may lead to the development of MPNs.
How can you help?
Leukaemia
and Lymphoma NI will fund the collection of DNA and RNA for genetic analysis. Later studies will enable the team to explore how lifestyle, occupational and environmental factors may lead to the development of MPNs.
How can you help?
Mazcd
MPNVoice
in
MPN Voice
5 years ago
What next?
After being diagnosed with
leukaemia
, I noticed a change to my bowel habit [including a toilet bowl completely covered in blood] and asked for a referral to a surgical clinic for investigation. I was refused this and told I was being overly-anxious.
After being diagnosed with
leukaemia
, I noticed a change to my bowel habit [including a toilet bowl completely covered in blood] and asked for a referral to a surgical clinic for investigation. I was refused this and told I was being overly-anxious.
Antaine
in
Dialysis Support
5 years ago
New compendium of quality CLL resources for patients + your hematologist
I am sharing a collection of high quality CLL resources for both patients and hematologists. First, the patient resources which include: patient checklist doctor visit checklist building your CLL team financial support tracking lab reports. These important resources are from leading
I am sharing a collection of high quality CLL resources for both patients and hematologists. First, the patient resources which include: patient checklist doctor visit checklist building your CLL team financial support tracking lab reports. These important resources are from leading
GlennSabin
in
CLL Support
5 years ago
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Symptoms - Newbie - Awaiting results re: BMB- ET
Hi all, I have posted a couple of times and found everyone very supportive. I'm a 55 yr old lady who has been under Haematolgy dept. for about a year. On 75mg asprin only. The expectation is that I have Essential Thrombocythemia and although my platelets are relatively low 460 I have been quite symptomatic
Hi all, I have posted a couple of times and found everyone very supportive. I'm a 55 yr old lady who has been under Haematolgy dept. for about a year. On 75mg asprin only. The expectation is that I have Essential Thrombocythemia and although my platelets are relatively low 460 I have been quite symptomatic
Hope2-Optimism
in
MPN Voice
5 years ago
Looking for CLL specialist in Denver, CO
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
Hi, so my hematologist has said I need to start chemo , undergoing lymph node biopsy tomorrow to make sure its CLL and not lymphoma since I was dx only on blood work, but before I actually start chemo was thinking I should see a CLL specialist (esp. because you all have recommended it). Does anyone
jgamberg
in
CLL Support
5 years ago
CG-806... starts the long trek..
Aptose Biosciences announced that it has submitted an Investigational New Drug (IND) application for CG-806 to the U.S. Food and Drug Administration (FDA) requesting approval to initiate its Phase 1 clinical trial program. CG-806 is an oral, first-in-class small molecule inhibitor of all known forms
Aptose Biosciences announced that it has submitted an Investigational New Drug (IND) application for CG-806 to the U.S. Food and Drug Administration (FDA) requesting approval to initiate its Phase 1 clinical trial program. CG-806 is an oral, first-in-class small molecule inhibitor of all known forms
Cllcanada
Top Poster CURE Hero
in
CLL Support
5 years ago
NCBI Journal - Cannabis Extract Treatment for Terminal Acute Lymphoblastic Leukemia with a Philadelphia Chromosome Mutation
I found this paper a while back whilst researching information about Waldenstrom's Macroglobulinemia (WM), I am currently taking Ibrutinib (Ibruvica) for this condition, which is a similar disease to
leukaemia
.
I found this paper a while back whilst researching information about Waldenstrom's Macroglobulinemia (WM), I am currently taking Ibrutinib (Ibruvica) for this condition, which is a similar disease to
leukaemia
.
Khenet
in
CLL Support
5 years ago
Polychythemia
At Dec'2010, I have treated for Polycythemia when my PCV was 54 but as informed earlier, I am not having any Mutations and spleen, heart and lungs are normal. I am taking asprin 75 mg only and no symptoms by god grace. In between 2011 to till now, I going for venesection when my PCV cross 50. It may
At Dec'2010, I have treated for Polycythemia when my PCV was 54 but as informed earlier, I am not having any Mutations and spleen, heart and lungs are normal. I am taking asprin 75 mg only and no symptoms by god grace. In between 2011 to till now, I going for venesection when my PCV cross 50. It may
Selvamok
in
MPN Voice
5 years ago
Sometimes feel good and sometimes not
I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I have been on on 500 mg hydroxyurea for 5weeks. I wondered if anyone else sometimes felt really good and sometimes felt bad... weak and head goofy
I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I have been on on 500 mg hydroxyurea for 5weeks. I wondered if anyone else sometimes felt really good and sometimes felt bad... weak and head goofy
Cookiebaker
in
MPN Voice
5 years ago
Bone Marrow Aspiration - I'm scared.
I'm having 2 bone marrow aspirations in 1 week for stem cell injections. Has anyone had an aspiration with no meds but just localized numbing of the area? My doctor gave me the choice of meds or no meds. They do have laughing gas available should I need it. I don't always do well with meds so I thought
I'm having 2 bone marrow aspirations in 1 week for stem cell injections. Has anyone had an aspiration with no meds but just localized numbing of the area? My doctor gave me the choice of meds or no meds. They do have laughing gas available should I need it. I don't always do well with meds so I thought
iceskating1
in
MPN Voice
5 years ago
Groups supporting
I received the news just yesterday about I am going through an a linfoblastic cronic
leukaemia
. I was thought was just an anemia and I feel shocked. Looking for some support or group support can help me because I am not English and my family is far away.
I received the news just yesterday about I am going through an a linfoblastic cronic
leukaemia
. I was thought was just an anemia and I feel shocked. Looking for some support or group support can help me because I am not English and my family is far away.
Prometeo
in
Leukaemia CARE
5 years ago
CLL Tracker - Patient Data
In 2011 CLL Tracker www.clltracker.co.uk was introduced to share patient specific data on their CLL experiences. This international website provides detailed information, in graphical form, relating to: • Demographics • Diagnosis and staging • Prognostic markers • Blood results • Treatments • Complications
In 2011 CLL Tracker www.clltracker.co.uk was introduced to share patient specific data on their CLL experiences. This international website provides detailed information, in graphical form, relating to: • Demographics • Diagnosis and staging • Prognostic markers • Blood results • Treatments • Complications
RobertCLL
in
CLL Support
5 years ago
New to Site Imbruvica & Rituxan how are they tolerated together.
I’m new to the site but not new to CLL. I was diagnosed in 2003 and was watch and wait. Had treatment with fludarabine.. Was in remission for 10 years. Then back to watch and wait. Started imbruvica Jan 2019..first two weeks WBC came down...last two weeks the number went higher than when I started
I’m new to the site but not new to CLL. I was diagnosed in 2003 and was watch and wait. Had treatment with fludarabine.. Was in remission for 10 years. Then back to watch and wait. Started imbruvica Jan 2019..first two weeks WBC came down...last two weeks the number went higher than when I started
Bobbietf
in
CLL Support
5 years ago
Bmb report wording
Even though my last bmb was poor quality it was re-reviewed by an expert. I’ve pulled up the report from the portal and haven’t yet discussed with the expert. I’m still diagnosed with chronic Essential Thrombocythemia but these two sentences have me concerned. Should I be worried? - Glycophorin
Even though my last bmb was poor quality it was re-reviewed by an expert. I’ve pulled up the report from the portal and haven’t yet discussed with the expert. I’m still diagnosed with chronic Essential Thrombocythemia but these two sentences have me concerned. Should I be worried? - Glycophorin
robbjoy
in
MPN Voice
5 years ago
Still Undiagnosed !!!
Hi Everyone, Today i had an appointment with my hem and he still says that we have to wait another 3 to 4 months for definative diagnosis. As i had gone with 1initial phlobotomy in past 1 and half months, then after my hct and hb and rbc slightly decreases without any phlobotomy and i had never increased
Hi Everyone, Today i had an appointment with my hem and he still says that we have to wait another 3 to 4 months for definative diagnosis. As i had gone with 1initial phlobotomy in past 1 and half months, then after my hct and hb and rbc slightly decreases without any phlobotomy and i had never increased
Vigiindia
in
MPN Voice
5 years ago
Seeking people with experience of Stem Cell Transplant for Richter's - I have a decision to make!
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Hi All Have been reading lots of posts since my diagnosis of CLL 9 months ago - what a great community, which I have found really helpful. I was diagnosed with Non-Hodgkins DLBCL which is a Richter's transformation from previously undiagnosed CLL. I am a healthy 50 year old female, with no symptoms
Buddhababy
in
CLL Support
5 years ago
Is Bone marrow flow test is necessary every year?
I had bone marrow biopsy and flow test when I was diagnosed with CLL. But now I came to know that it is necessary to have BM flow test every year. Please share some information. Thanks
I had bone marrow biopsy and flow test when I was diagnosed with CLL. But now I came to know that it is necessary to have BM flow test every year. Please share some information. Thanks
Supratim
in
CLL Support
5 years ago
Idiopathic erythrocytosis
Hi Guys, apologies I couldn’t find the post regarding the differences in the terms idiopathic erythrocytosis, Polycythaemia and PV. Maz has received an answer from Prof Harrison to say: Polycythaemia just means too much blood, PV is the actual MPN and idiopathic erythrocytosis means too many red blood
Hi Guys, apologies I couldn’t find the post regarding the differences in the terms idiopathic erythrocytosis, Polycythaemia and PV. Maz has received an answer from Prof Harrison to say: Polycythaemia just means too much blood, PV is the actual MPN and idiopathic erythrocytosis means too many red blood
Aime
in
MPN Voice
5 years ago
Tamarin study update and a new study now recruiting
Tamarin Study
Effects of Tamoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The TAMARIN study has been running in 13 hospitals across the UK since 2018 and to date the preliminary results are very exciting. The study is a
Tamarin Study
Effects of Tamoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The TAMARIN study has been running in 13 hospitals across the UK since 2018 and to date the preliminary results are very exciting. The study is a
Mazcd
MPNVoice
in
MPN Voice
5 years ago
A toothpick in the heart.
He was treated for sepsis and
leukaemia
before doctors pinpointed the toothpick in his right atrium. If nothing else, this indicates the proximity of the stomach to the heart!
He was treated for sepsis and
leukaemia
before doctors pinpointed the toothpick in his right atrium. If nothing else, this indicates the proximity of the stomach to the heart!
jennydog
in
AF Association
5 years ago
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