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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
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
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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
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
Waiting for BMB results (gulp)
Hi all, I've been waiting for a month after my first BMB. Took weeks to heal btw. Because I am back home in Australia, Prof Claire's team are going to email me. I'm an Aussie bit live in Brighton, UK (12 years). So I'm a long way from home, and yet at home if you know what I mean. I read this after
Hi all, I've been waiting for a month after my first BMB. Took weeks to heal btw. Because I am back home in Australia, Prof Claire's team are going to email me. I'm an Aussie bit live in Brighton, UK (12 years). So I'm a long way from home, and yet at home if you know what I mean. I read this after
ilovetoastwithbutter
in
MPN Voice
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
ASH 2018: ECOG trial shows superiority of Ibrutinib and rituximab over FCR
For more see: https://cllsociety.org/2019/01/ash-2018-dr-stephan-stilgenbauer-on-the-superiority-of-ibrutinib-rituximab-vs-fcr-for-frontline-use-in-cll-chronic-
lymphocytic
-
leukemia
-in-patients-under-70/ This is real important.
For more see: https://cllsociety.org/2019/01/ash-2018-dr-stephan-stilgenbauer-on-the-superiority-of-ibrutinib-rituximab-vs-fcr-for-frontline-use-in-cll-chronic-
lymphocytic
-
leukemia
-in-patients-under-70/ This is real important.
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Survey for the MOSAICC Study - we need your help
MOSAICC (
M
yel
O
proliferative neoplasm
S
:
A
n
I
n-depth
C
ase-
C
ontrol) Study – piecing together the causes of myeloproliferative neoplasms A UK-wide study called the MOSAICC Study will commence in 2019 to piece together the causes of MPNs and the team running
MOSAICC (
M
yel
O
proliferative neoplasm
S
:
A
n
I
n-depth
C
ase-
C
ontrol) Study – piecing together the causes of myeloproliferative neoplasms A UK-wide study called the MOSAICC Study will commence in 2019 to piece together the causes of MPNs and the team running
Mazcd
MPNVoice
in
MPN Voice
5 years ago
New Oxford-developed tool reads the life histories of cancer cells - how subclones develop
[i]"..a team of Oxford researchers has developed a way to track the genetic "life histories" of thousands of individual cancer cells at once, which may lead to more effective and personalized cancer treatments. Cancer cells are basically just normal cells that have accumulated certain mutations that
[i]"..a team of Oxford researchers has developed a way to track the genetic "life histories" of thousands of individual cancer cells at once, which may lead to more effective and personalized cancer treatments. Cancer cells are basically just normal cells that have accumulated certain mutations that
AussieNeil
Partner
in
CLL Support
5 years ago
Question - how many different varieties of antibodies can B-cells make? Hint - it's hypermutation (IGHV mutation) that makes it possible
Answer, 1 quintillion or 1,000,000,000,000,000,000 or 10^18 according to[i] a team led by Drs. Bryan Briney and Dennis R. Burton at Scripps Research examined antibody-producing B cells isolated from blood samples of 10 people between the ages of 18 and 30. ... Additional studies are needed to more accurately
Answer, 1 quintillion or 1,000,000,000,000,000,000 or 10^18 according to[i] a team led by Drs. Bryan Briney and Dennis R. Burton at Scripps Research examined antibody-producing B cells isolated from blood samples of 10 people between the ages of 18 and 30. ... Additional studies are needed to more accurately
AussieNeil
Partner
in
CLL Support
5 years ago
CoQ10 Benefits?
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Elam
in
CLL Support
5 years ago
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