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Myelofibrosis life expectancy
Hi. I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using Ruxolitinib as existing meds of Hydroxycarbonide/Methotrexate/ Dipyridamole/folic acid are not decreasing my platelets? Constantly high . Rarely under 800.000- 900,000. Sometimes
Hi. I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using Ruxolitinib as existing meds of Hydroxycarbonide/Methotrexate/ Dipyridamole/folic acid are not decreasing my platelets? Constantly high . Rarely under 800.000- 900,000. Sometimes
Hidden
in
MPN Voice
6 years ago
Starting CAR-T therapy for my relapsing CLL
Friends and CLL Society supporters: This isn't easy. After consulting with my wife, my family, my closest friends and key supporters of the CLL Society, I decided it was best to again share details of my personal battle with CLL in a very public way. After a wonderful run of 69 months on Ibrutinib,
Friends and CLL Society supporters: This isn't easy. After consulting with my wife, my family, my closest friends and key supporters of the CLL Society, I decided it was best to again share details of my personal battle with CLL in a very public way. After a wonderful run of 69 months on Ibrutinib,
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
CLL just diagnosed
Hi, I am happy to have joined this group. I am also new to this site and would appreciate any guidance anyone may have. I am 44 and was diagnosed with CLL less than a month ago. I caught a virus in December and my whole neck down to my collar bone was in small painfil glands. WBC were at first 16 then
Hi, I am happy to have joined this group. I am also new to this site and would appreciate any guidance anyone may have. I am 44 and was diagnosed with CLL less than a month ago. I caught a virus in December and my whole neck down to my collar bone was in small painfil glands. WBC were at first 16 then
SaEva
in
CLL Support
6 years ago
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Mycophenolate and loss of appetite...?
Hi does anyone else suffer with this as a side effect of mycophenolate? I was on it and had no appetite at all for several weeks was only eating biscuits had about 3 proper meals in a 6 week period. I had to them stop the myco for 10 days as it had lowered my immune system too low, but am now back on
Hi does anyone else suffer with this as a side effect of mycophenolate? I was on it and had no appetite at all for several weeks was only eating biscuits had about 3 proper meals in a 6 week period. I had to them stop the myco for 10 days as it had lowered my immune system too low, but am now back on
Sara_A
in
LUPUS UK
6 years ago
Ruxolitinib
Have been on 30grms of Ruxolitinib now for nearly 6mths and thankfully I have never felt so well. No itching which was severe and bloods are great. Brilliant consultant who has really looked after me and worked hard to get the drug for me. Diagnosed with Jax-2- positive MPN consistent with PV diagnosed
Have been on 30grms of Ruxolitinib now for nearly 6mths and thankfully I have never felt so well. No itching which was severe and bloods are great. Brilliant consultant who has really looked after me and worked hard to get the drug for me. Diagnosed with Jax-2- positive MPN consistent with PV diagnosed
waddles22
in
MPN Voice
6 years ago
Booklet update: Stem Cell transplants + AML treatments
Hi all, Hope you're well - a bit chilly here so keep warm! Just a quick update on new booklets available from Leukaemia Care Allogeneic Stem Cell transplants Autologous Stem Cell Transplants DA (Daunarubicin) and ARAc (Cytarabine) for Acute Myeloid Leukaemia FLAG-Ida for Acute Myeloid Leukaemia (AML
Hi all, Hope you're well - a bit chilly here so keep warm! Just a quick update on new booklets available from Leukaemia Care Allogeneic Stem Cell transplants Autologous Stem Cell Transplants DA (Daunarubicin) and ARAc (Cytarabine) for Acute Myeloid Leukaemia FLAG-Ida for Acute Myeloid Leukaemia (AML
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
6 years ago
Front line treatment options for wait and watch patients
I am CLL , Dx in 2013 and not yet started any treatment . My lymphocyte count has gone up to 1.50 lakhs, mild enlargement of spleen and a few lymph nodes in stomach and neck .No fever , No night sweat, No fatigue. CD 38 negative , Zap 70 negative. I am feeling very tense due to any possible damage
I am CLL , Dx in 2013 and not yet started any treatment . My lymphocyte count has gone up to 1.50 lakhs, mild enlargement of spleen and a few lymph nodes in stomach and neck .No fever , No night sweat, No fatigue. CD 38 negative , Zap 70 negative. I am feeling very tense due to any possible damage
venk_46
in
CLL Support
6 years ago
Does anyone with CLL or cancer, part of "Downwinder" radiation exposure from 1950s.
I lived in southern Utah in 1953-1954 during nuclear bomb testing by US government north of Las Vegas NV. All my family who lived with me are now deceased from cancer. US government has assistance program for those who developed cancer, but for some unknown reason exclude CLL. Maybe because there are
I lived in southern Utah in 1953-1954 during nuclear bomb testing by US government north of Las Vegas NV. All my family who lived with me are now deceased from cancer. US government has assistance program for those who developed cancer, but for some unknown reason exclude CLL. Maybe because there are
Big_Dee
in
CLL Support
6 years ago
Second cancer from CLL???
Hi. My name is Dianne and have had CLL for about 5 years. Thanks God no treatment needed yet. Unfortunately I also hace CLL in my linguial tonsils and just went for a check up yesterday to see how they are doing. Well I will be going for a biopsy on Monday as my doctor wants to confirm it is just the
Hi. My name is Dianne and have had CLL for about 5 years. Thanks God no treatment needed yet. Unfortunately I also hace CLL in my linguial tonsils and just went for a check up yesterday to see how they are doing. Well I will be going for a biopsy on Monday as my doctor wants to confirm it is just the
dcfrey
in
CLL Support
6 years ago
Find a Cure for Me - BBC 12 Feb
If you follow CLLSA on Facebook or Twitter or listen to BBC Radio 4 – you may already know that award-winning investigative journalist Simon Cox this week aired a report on his quest for a cure for CLL following his diagnosis at the age of 37. If you missed it, you can catch it on http://www.bbc.co.uk
If you follow CLLSA on Facebook or Twitter or listen to BBC Radio 4 – you may already know that award-winning investigative journalist Simon Cox this week aired a report on his quest for a cure for CLL following his diagnosis at the age of 37. If you missed it, you can catch it on http://www.bbc.co.uk
Myrddin
in
CLL Support
6 years ago
ALL
Just wondering if anyone is experiencing acute lymphoblastic leukemia as my mum was diagnosed last February and went out of remission 14 days after going in to remission what happens next as they have had to put her sct on hold in light of new results
Just wondering if anyone is experiencing acute lymphoblastic leukemia as my mum was diagnosed last February and went out of remission 14 days after going in to remission what happens next as they have had to put her sct on hold in light of new results
Melza27
in
Leukaemia CARE
6 years ago
The Cancer Genome Atlas (from NIH) - Great Cancer Resource
There are at least 200 forms of cancer, and many more subtypes. Each of these is caused by errors in DNA that cause cells to grow uncontrolled. Identifying the changes in each cancer’s complete set of DNA – its genome – and understanding how such changes interact to drive the disease will lay the foundation
There are at least 200 forms of cancer, and many more subtypes. Each of these is caused by errors in DNA that cause cells to grow uncontrolled. Identifying the changes in each cancer’s complete set of DNA – its genome – and understanding how such changes interact to drive the disease will lay the foundation
wmay13241
in
CLL Support
6 years ago
What is CRISPR gene editing, and how does it work?
There's been considerable interest in the potential for gene editing for curing diseases such as CLL, so this article by Merlin Crossley, Deputy Vice-Chancellor Academic and Professor of Molecular Biology, UNSW should be of interest: https://theconversation.com/what-is-crispr-gene-editing-and-how-does-it-work
There's been considerable interest in the potential for gene editing for curing diseases such as CLL, so this article by Merlin Crossley, Deputy Vice-Chancellor Academic and Professor of Molecular Biology, UNSW should be of interest: https://theconversation.com/what-is-crispr-gene-editing-and-how-does-it-work
AussieNeil
Partner
in
CLL Support
6 years ago
This looks a really promising new treatment
I have posted this link before but worth repeating for new members of this Board. RG7388 is an existing drug used in Acute Leukaemia, hence has a track record. My very rough and amateurish synopsis: We all have a p53 gene which effectively fights cancer. Some/all of us have another gene called MDM2 which
I have posted this link before but worth repeating for new members of this Board. RG7388 is an existing drug used in Acute Leukaemia, hence has a track record. My very rough and amateurish synopsis: We all have a p53 gene which effectively fights cancer. Some/all of us have another gene called MDM2 which
Paul123456
in
MPN Voice
6 years ago
Treatment for cll stage 4 with 17p deletion for 63 year old women?
Hello my mother diagnosed with cll stage 4 with 17p deletion in December 2017. She is taking chlorambucil. But in the blood test lymphocytes are increased. Physician said her survival is only 1 year. I'm much worried. She also recommended ibrutinib. But very expensive. Actually I cannot afford. Shall
Hello my mother diagnosed with cll stage 4 with 17p deletion in December 2017. She is taking chlorambucil. But in the blood test lymphocytes are increased. Physician said her survival is only 1 year. I'm much worried. She also recommended ibrutinib. But very expensive. Actually I cannot afford. Shall
Poojaa
in
CLL Support
6 years ago
Cancer-Related Fatigue: Syndrome Not Symptom- by Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society http://www.lls.org/ has published an excellent audio cast on fatigue, that has a different perspective than many of the Patient Power and ONCLive videos on CLL & Fatigue and many suggestions of what we can do to improve our fatigue without pharmaceuticals: (LLS is a USA
The Leukemia & Lymphoma Society http://www.lls.org/ has published an excellent audio cast on fatigue, that has a different perspective than many of the Patient Power and ONCLive videos on CLL & Fatigue and many suggestions of what we can do to improve our fatigue without pharmaceuticals: (LLS is a USA
lankisterguy
Volunteer
in
CLL Support
6 years ago
We need you!
Many of you have completed the Leukaemia Care patient experience survey over the past two years, Analysis of your replies clearly shows that CLL patients are left with little support from healthcare providers during ‘watch and wait’ and you are often not provided with information to help you understand
Many of you have completed the Leukaemia Care patient experience survey over the past two years, Analysis of your replies clearly shows that CLL patients are left with little support from healthcare providers during ‘watch and wait’ and you are often not provided with information to help you understand
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Update on Lymphoma from the 2017 American Society of Hematology (ASH) Annual Meeting by Stephen M. Ansell, MD, PhD & Laurie H. Sehn, MD, MP
Webinar: Update on Lymphoma from the 2017 American Society of Hematology (ASH) Annual Meeting, which took place on January 23. It is now available on telephone replay 24 hours a day, 7 days a week. Just call 1-800-625-5288 and give the code #1151498 or click here http://click.icptrack.com/icp/relay.php
Webinar: Update on Lymphoma from the 2017 American Society of Hematology (ASH) Annual Meeting, which took place on January 23. It is now available on telephone replay 24 hours a day, 7 days a week. Just call 1-800-625-5288 and give the code #1151498 or click here http://click.icptrack.com/icp/relay.php
lankisterguy
Volunteer
in
CLL Support
6 years ago
Polycythemia enquiry
I am being investigated for Polycycthemia. I'm currently awaiting a nuclear cell mass test but my blood request says ' monitoring on chemotherapy , why is this on the request ? It also says old myeloid ?
I am being investigated for Polycycthemia. I'm currently awaiting a nuclear cell mass test but my blood request says ' monitoring on chemotherapy , why is this on the request ? It also says old myeloid ?
Kwebb
in
MPN Voice
6 years ago
Hyperbaric Oxygen Therapy
I am taking 20 Hyperbaric Treatments in an effort to increase my body's ability to make blood platelets. Hyperbaric increases the number of stem cells in a person's body by 800%. I hope the stem cells can fix my bone marrow so I make more platelets. If this approach to ITP is successful I will let everyone
I am taking 20 Hyperbaric Treatments in an effort to increase my body's ability to make blood platelets. Hyperbaric increases the number of stem cells in a person's body by 800%. I hope the stem cells can fix my bone marrow so I make more platelets. If this approach to ITP is successful I will let everyone
jjjamesholder
in
ITP Support Association
6 years ago
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