Search
Search
About
Log in
Join
Experiences with
Leukaemia
Posts
Communities
3,250 public posts
Filter results
"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
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
Want to take advantage of all our features? Just log in!
Log in
or
Join
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
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
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
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
I Have Just Completed My 12 Month CLL Treatment Plan
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
DanBro1
in
CLL Support
2 years ago
Webinar - 3.30pm 3rd December - Understanding advocacy and what advocates can do for leukaemia patients
Care - how advocacy informs the rest of our work We will be joined by: Charlotte Martin,
Leukaemia
Care Patient Advocacy Manager Ella Guthrie,
Leukaemia
Care Advocacy Officer
Care - how advocacy informs the rest of our work We will be joined by: Charlotte Martin,
Leukaemia
Care Patient Advocacy Manager Ella Guthrie,
Leukaemia
Care Advocacy Officer
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Health anxiety at an all time high!
Tonight I have googled shortness of breath and some other symptoms I am feeling at the moment, bad stomach issues, sore throat, and I have convinced myself I have
leukaemia
… I am so so frightened I know I have to book a blood test tomorrow now. My last blood work was carried out in December 2021.
Tonight I have googled shortness of breath and some other symptoms I am feeling at the moment, bad stomach issues, sore throat, and I have convinced myself I have
leukaemia
… I am so so frightened I know I have to book a blood test tomorrow now. My last blood work was carried out in December 2021.
Kellylou1712
in
Anxiety Support
2 years ago
Aspartame / Energy Drinks & Diet Soda
Unfortunately the only treatment that worked for me back then (excluding spleenectomy) was an experimental
Leukaemia
IV course which no longer exists. I found my ITP has returned after a head injury snowboarding (snowboarding with unknown ITP, excellent choice).
Unfortunately the only treatment that worked for me back then (excluding spleenectomy) was an experimental
Leukaemia
IV course which no longer exists. I found my ITP has returned after a head injury snowboarding (snowboarding with unknown ITP, excellent choice).
Cheshirecharlotte
in
ITP Support Association
2 years ago
Shingles vaccine for cll patients
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
Splashes
in
CLL Support
2 years ago
Ports?
Good morning, I have Polycythemia Vera. I am having regular phlebotomy and do not have the best veins. I am wondering if anyone out there, who is having phlebotomy, had a port put in instead of having arm phlebotomy and how that is working out for you? I welcome all thoughts/comments about this. Thanks
Good morning, I have Polycythemia Vera. I am having regular phlebotomy and do not have the best veins. I am wondering if anyone out there, who is having phlebotomy, had a port put in instead of having arm phlebotomy and how that is working out for you? I welcome all thoughts/comments about this. Thanks
Bluetoday1
in
MPN Voice
2 years ago
UK Webinar - 3.30pm GMT 17th December - Making the best of your CLL medical appointments
Hi friends 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 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
PV and CML?
I was diagnosed with PV, Jak 2+ several years ago. I have been here on MPN Voice for most of that time. I appreciate how everyone shares their experiences and now I have a new one to share! My newest hematologist, MD Anderson Cancer Center where I live has been through several changes in Dr.s, is having
I was diagnosed with PV, Jak 2+ several years ago. I have been here on MPN Voice for most of that time. I appreciate how everyone shares their experiences and now I have a new one to share! My newest hematologist, MD Anderson Cancer Center where I live has been through several changes in Dr.s, is having
Jsb45
in
MPN Voice
2 years ago
Adult blood cancer-causing mutations occur in early childhood
The paper, published today (19 January 2022) in Nature, suggests that these mutations will cause blood cells to multiply at different rates in different people, and those in whom these mutations cause faster growth have cancer symptoms appearing earlier. If these mutations proliferate slowly, it is possible
The paper, published today (19 January 2022) in Nature, suggests that these mutations will cause blood cells to multiply at different rates in different people, and those in whom these mutations cause faster growth have cancer symptoms appearing earlier. If these mutations proliferate slowly, it is possible
Manouche
in
MPN Voice
2 years ago
Myelo fibrosis
Hi I am in the intermediate stage, level 2 of the disease and go onto ruxolitinib tomorrow. I have looked on several forums and never managed to connect with any fellow sufferers from this mpn variant. Can't get any real information on immunosuppression or even what to expect or look for in the future
Hi I am in the intermediate stage, level 2 of the disease and go onto ruxolitinib tomorrow. I have looked on several forums and never managed to connect with any fellow sufferers from this mpn variant. Can't get any real information on immunosuppression or even what to expect or look for in the future
Carpangler
in
MPN Voice
2 years ago
Leukemia & Lymphoma Society (USA) provides a LLS Clinical Trial Nurse Navigator to assist you throughout the entire clinical trial process
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
lankisterguy
Volunteer
in
CLL Support
2 years ago
1
...
29
30
31
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1793 results
MPN Voice
818 results
Leukaemia CARE
268 results
View top 10 communities
Sort by
Most Relevant
Newest