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New User Name (EPguy) and MPN as a Continuum
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx of ET. In fact my Dx is PV, by both my first Hem and my present MPN specialist. I do have some features of each as I've discussed before.
EPguy
in
MPN Voice
2 years ago
To remove my port or not?
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
Hello, I am a 66 year old male, CLL for about 10 years, was in W &W until Feb, 2021, then completed 6 months treatment with Bendamustine and Rituximab in July 2021, two follow up appts. since then both went well with MRD at 0.07%. I had a Infusaport (port) placed for my treatment. My question is for
napa
in
CLL Support
2 years ago
Information on Acute Myeloid Leukaemia
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
After PV for many years , Myelofibrosis for two years , I now have AML. On Ruxolitinib and EPO injections I’m having panic attacks, it seems no treatment is available apart from transfusions. Is anybody else in a similar situation, and how are you managing.
Mysi
in
MPN Voice
2 years ago
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Ruxolitinib and weight gain
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better, bloods behaving themselves and have gained the 1/2 stone I had lost. But now I have gained another 1/2 stone. I went out to an event, I kept distanced
Mal42
in
MPN Voice
2 years ago
COVID-19 UPDATES - The latest experimental therapies - not CLL specific, but potential treatment for COVID-19 in many cancer patients
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
COVID-19 UPDATES Dr. Leyfman Discusses the Increased Risk of COVID-19 and Cancer Patients In our third and final interview with , experimental therapies for COVID-19 are discussed. While not CLL specific, Dr. Leyfman does present potential options for treating COVID-19 in cancer patients broadly.
lankisterguy
Volunteer
in
CLL Support
2 years ago
New Member to Pancreatitis Support / Patient Intro
Hello Pancreatitis Support, I'm a CLL type
Leukaemia
patient (and part of a great HU community for that. Its a Chronic condition). CLL implies gene defects. DX early 2011, TX 2014/2015 with Chemoimmunotherapy.
Hello Pancreatitis Support, I'm a CLL type
Leukaemia
patient (and part of a great HU community for that. Its a Chronic condition). CLL implies gene defects. DX early 2011, TX 2014/2015 with Chemoimmunotherapy.
Ernest2
in
Chronic Pancreatitis Support
2 years ago
Study shows more Driver Mutations in General Population
The Denmark study used super sensitive tests.. MPNs may be far more common than current info suggets. The image here shows 3% have a Jak2 mutation even as most of these have no MPN Dx. Their cutoff of 1% (orange circle) still includes way more than MPN with Dx (grey circle) Highlights: Their point
The Denmark study used super sensitive tests.. MPNs may be far more common than current info suggets. The image here shows 3% have a Jak2 mutation even as most of these have no MPN Dx. Their cutoff of 1% (orange circle) still includes way more than MPN with Dx (grey circle) Highlights: Their point
EPguy
in
MPN Voice
2 years ago
Night sweat relief?
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
I am new to CLL having been diagnosed in Jan. 2022. I had no symptoms until recently experiencing night sweats. I am wondering if there is any treatment for this and also wonder if it means my condition is advancing quickly. I have an appt with the hematologist/ oncologist in May. He said I am on a watch
9RGBZ
in
CLL Support
2 years ago
Light up a star in memory of a loved one via our Make it Shine campaign
Add a shooting, a shining or twinkling star and light up the sky Whatever your reason, you can dedicate a star and at the same time support the ongoing work of
Leukaemia
Care here > https://visufund.com/light-a-star-for-
leukaemia
-care-lonelywithleukaemia Please spread the word
Add a shooting, a shining or twinkling star and light up the sky Whatever your reason, you can dedicate a star and at the same time support the ongoing work of
Leukaemia
Care here > https://visufund.com/light-a-star-for-
leukaemia
-care-lonelywithleukaemia Please spread the word
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Working with CLL!
Hello all, I'm new to this site but have already gained a vast amount of knowledge and feel a sense of support from reading the posts and engaging with your stories. I received all my test results, genetic/bloods etc and confirmation of CLL back in Dec 2021. I'm on the Watch and Wait journey! I work
Hello all, I'm new to this site but have already gained a vast amount of knowledge and feel a sense of support from reading the posts and engaging with your stories. I received all my test results, genetic/bloods etc and confirmation of CLL back in Dec 2021. I'm on the Watch and Wait journey! I work
MDcard
in
CLL Support
2 years ago
What does curing CLL mean?
This is a question I often wonder about but have never asked my doctor. When we hear about a cure for CLL what we really mean is a way to live with it, correct? The existing treatments and treatments on the horizon won't necessarily eliminate CLL altogether or the associated risks of secondary cancers
This is a question I often wonder about but have never asked my doctor. When we hear about a cure for CLL what we really mean is a way to live with it, correct? The existing treatments and treatments on the horizon won't necessarily eliminate CLL altogether or the associated risks of secondary cancers
CoCoLuna11
in
CLL Support
2 years ago
"Sailing with CLL" - a sense of humor may help....
"Aboard" and "Port" are two terms which I heard in past days during my medical care: Routinly I am asked by the Cancer Clinic lab technician: "Do you have a port?" I do not. But at this moment I smile and I am tempted to say: "Yes, my port is Santo Domingo!" and I sense a bit euphoria: When I retired
"Aboard" and "Port" are two terms which I heard in past days during my medical care: Routinly I am asked by the Cancer Clinic lab technician: "Do you have a port?" I do not. But at this moment I smile and I am tempted to say: "Yes, my port is Santo Domingo!" and I sense a bit euphoria: When I retired
janvog
in
CLL Support
2 years ago
CAR-T, why it's not ready for MPNs
Today's CNN has an article about CAR-T being curative for leukemia CLL. So I checked it out a bit further. http://www.mpnresearchfoundation.org/news/what-does-the-approval-of-kymriah-mean-for-mpn-patients/ As I understand it CAR-T looks at the antigens on the surface of the cells, and cannot see inside
Today's CNN has an article about CAR-T being curative for leukemia CLL. So I checked it out a bit further. http://www.mpnresearchfoundation.org/news/what-does-the-approval-of-kymriah-mean-for-mpn-patients/ As I understand it CAR-T looks at the antigens on the surface of the cells, and cannot see inside
EPguy
in
MPN Voice
2 years ago
HU Resistance/Intolerance Prognostic from Dr Gotlib
I came across this interview including Dr. Gotlib, Stanford MPN expert. It's regarding MDM Inhibitors for HU resistant/intolerant PV, MF "Experts Explain MDM2 Inhibition and Clinical Trial for MPN Patients" https://patientpower.info/myeloproliferative-neoplasms/emerging-research/experts-explain-mdm2
I came across this interview including Dr. Gotlib, Stanford MPN expert. It's regarding MDM Inhibitors for HU resistant/intolerant PV, MF "Experts Explain MDM2 Inhibition and Clinical Trial for MPN Patients" https://patientpower.info/myeloproliferative-neoplasms/emerging-research/experts-explain-mdm2
EPguy
in
MPN Voice
2 years ago
Anyone with Chronic Idiopathic Myelofibrosis?
Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxyurea for 2yrs now. Have terrible leg pain in bed not all the time anyone else with this .
Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxyurea for 2yrs now. Have terrible leg pain in bed not all the time anyone else with this .
Mrbeasley
in
MPN Voice
2 years ago
UK Webinar this Friday - 3.30pm GMT 17th December - Making the best of your CLL medical appointments
Hi friends a reminder - You may find this
Leukaemia
Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway.
Hi friends a reminder - You may find this
Leukaemia
Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway.
HAIRBEAR_UK
Founder Admin
in
CLL Support
2 years ago
Did anyone have MGUS progress into CLL, and after treatment for CLL, did your MGUS improve or no longer exist?
Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal Gammopathy of Undetermined Significance) 15 years ago. It is an abnormal protein (M protein) in the blood and a precancerous condition to Multiple Myeloma, Lymphoma, CLL etc. I was diagnosed in October 2021
Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal Gammopathy of Undetermined Significance) 15 years ago. It is an abnormal protein (M protein) in the blood and a precancerous condition to Multiple Myeloma, Lymphoma, CLL etc. I was diagnosed in October 2021
Luv2Craft
in
CLL Support
2 years ago
Webinar - 3.30pm 10th December - End of life care for leukaemia
We all work together here with hope and information to help each other cope when with living with
Leukaemia
. One day that may change and we may require different information to prepare should treatment no longer be appropriate and options run out.
We all work together here with hope and information to help each other cope when with living with
Leukaemia
. One day that may change and we may require different information to prepare should treatment no longer be appropriate and options run out.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
To continue or not....that is the question
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
Dawson21
in
CLL Support
2 years ago
Happy to be here!
Post transplant there were no immediate complications and I've been
leukaemia
free ever since.
Post transplant there were no immediate complications and I've been
leukaemia
free ever since.
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
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