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Update re ASCT relapse
Due to my cll returning and having had several new lines of treatment my consultants both my Cll specialist and my transplant specialist have offered me Rchop chemotherapy as one of my few options. This treatment I believe is not used to treat cll but used to treat lymphomas. Apparently it has been
Due to my cll returning and having had several new lines of treatment my consultants both my Cll specialist and my transplant specialist have offered me Rchop chemotherapy as one of my few options. This treatment I believe is not used to treat cll but used to treat lymphomas. Apparently it has been
Kraskie1915
in
CLL Support
9 months ago
NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera
Members of the MPN Voice advocacy team, a PV patient who was part of the MAJIC-PV trial and representatives from
Leukaemia
Care also attended NICE committee meetings at which the suitability of Ruxolitinib as an additional treatment option for PV patients in England was fully evaluated.
Members of the MPN Voice advocacy team, a PV patient who was part of the MAJIC-PV trial and representatives from
Leukaemia
Care also attended NICE committee meetings at which the suitability of Ruxolitinib as an additional treatment option for PV patients in England was fully evaluated.
Mazcd
MPNVoice
in
MPN Voice
9 months ago
B CELL lymphoma
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol I’m totally confused.. nothing new there! I did call the Doc to see what he thinks haven’t heard anything yet. Thought I would ask to see if you
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol I’m totally confused.. nothing new there! I did call the Doc to see what he thinks haven’t heard anything yet. Thought I would ask to see if you
Tchapman
in
CLL Support
9 months ago
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High Risk?
I’ve actually been feeling really well recently so the thought of
leukaemia
is quite a blow.
I’ve actually been feeling really well recently so the thought of
leukaemia
is quite a blow.
lizzziep
in
MPN Voice
1 year ago
Petechia
I have been treated with Ibrutinib for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this. This is my first time to post and
I have been treated with Ibrutinib for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this. This is my first time to post and
Glasstop
in
CLL Support
9 months ago
CLL/SLL and ischemic bowel death
My brother had untreated SLL. He died March 2022, after a week of omicron Covid infection that seemed to pass mid January of that year. We have heard rumors that many with CLL/SLL die of blood clot/ischemia, but I have been unable to confirm. Are there data to confirm this? I myself have CLL, which
My brother had untreated SLL. He died March 2022, after a week of omicron Covid infection that seemed to pass mid January of that year. We have heard rumors that many with CLL/SLL die of blood clot/ischemia, but I have been unable to confirm. Are there data to confirm this? I myself have CLL, which
prichman
in
CLL Support
9 months ago
Treatment for life?
Hello. First time posting here. Diagnosed with CLL in July by flow test and Fish test. Although still technically in lymphocytosis. My chart says diagnosis: CLL. During the discussion in July my Dr told me of things they will be keeping an eye on. Then he said he won't discuss particular treatment plans
Hello. First time posting here. Diagnosed with CLL in July by flow test and Fish test. Although still technically in lymphocytosis. My chart says diagnosis: CLL. During the discussion in July my Dr told me of things they will be keeping an eye on. Then he said he won't discuss particular treatment plans
Quiltingone
in
CLL Support
9 months ago
Agios and Alnylam sign agreement for siRNA candidate
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for phlebotomy. “We look forward to initiating
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for phlebotomy. “We look forward to initiating
Manouche
in
MPN Voice
1 year ago
Anyone had a coronary sinus reducer?
Basically my bone marrow transplant and other treatment for
leukaemia
has likely caused my heart disease. Since 2019 I have had 5 angiograms and 3 angioplasties. I'm urgently awaiting another one of each.
Basically my bone marrow transplant and other treatment for
leukaemia
has likely caused my heart disease. Since 2019 I have had 5 angiograms and 3 angioplasties. I'm urgently awaiting another one of each.
SomersetJo
in
British Heart Foundation
10 months ago
tasquinimod in myelofibrosis (MF)
»The data showed that treatment with this drug results in normal blood counts, reduction of fibrosis in the bone marrow and normalization of spleen size in this mouse model. That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod
»The data showed that treatment with this drug results in normal blood counts, reduction of fibrosis in the bone marrow and normalization of spleen size in this mouse model. That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod
Manouche
in
MPN Voice
1 year ago
Pain in the spleen/splenomegaly
Hello, maybe someone has an idea. After 5 years w&w my spleen has now enlarged (splenomegaly). I've also been having pain on my left side for a few days now. Are there any natural or herbal ways I can support my spleen? Because I don't want to have a spleen removed. I don't take any other medicine,
Hello, maybe someone has an idea. After 5 years w&w my spleen has now enlarged (splenomegaly). I've also been having pain on my left side for a few days now. Are there any natural or herbal ways I can support my spleen? Because I don't want to have a spleen removed. I don't take any other medicine,
Omaschnabel
in
CLL Support
9 months ago
Mutation Levels
I have seen other discussions re bad mutations , on my regular letter to my doctor from my haematologist it states : Chronic Lymphocytic Leukemia associated with high risk variants including loss of the LEU and ATM genes. As per my normal blood results, do these have a high and low level and if so
I have seen other discussions re bad mutations , on my regular letter to my doctor from my haematologist it states : Chronic Lymphocytic Leukemia associated with high risk variants including loss of the LEU and ATM genes. As per my normal blood results, do these have a high and low level and if so
uide3095
in
CLL Support
9 months ago
Jakafi + Grapefruit
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
hunter5582
in
MPN Voice
1 year ago
Drs. Susan O'Brien and Catherine Wu Presented the Binet-Rai Medal at 20th International Workshop on Chronic Lymphocytic Leukemia
Two doctors who have spent many many hours helping the CLL community.
I FEEL SURE THAT WE ALL EXPRESS OUR MANY THANKS.
THIS IS AN AWARD THAT IS WELL DESERVED.
During this past weekend's 20th biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL), Susan M
Two doctors who have spent many many hours helping the CLL community.
I FEEL SURE THAT WE ALL EXPRESS OUR MANY THANKS.
THIS IS AN AWARD THAT IS WELL DESERVED.
During this past weekend's 20th biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL), Susan M
Kwenda
in
CLL Support
9 months ago
Stem cell transplant starts on Monday
My experience shows that for a few of us, even an abundance of treatments, can’t keep CLL at bay forever and it continues to be a life threatening
leukaemia
. Hardly a ‘good’ cancer ! 😕 Sending best wishes to you all Jackie
My experience shows that for a few of us, even an abundance of treatments, can’t keep CLL at bay forever and it continues to be a life threatening
leukaemia
. Hardly a ‘good’ cancer ! 😕 Sending best wishes to you all Jackie
Jm954
Administrator
in
CLL Support
1 year ago
A trial examining the effects of pausing BTKis to coincide with SARS-CoV-2 vaccination and its impact on immune responses in CLL patients
Trial registration number ISRCTN14197181 https://bmjopen.bmj.com/content/13/9/e077946 This study aims to determine in patients with chronic lymphocytic
leukaemia
(CLL) if a 3-week pause in Bruton tyrosine kinase inhibitor therapy (BTKi) starting 1 week before delivery of SARS-CoV-2 vaccine booster
Trial registration number ISRCTN14197181 https://bmjopen.bmj.com/content/13/9/e077946 This study aims to determine in patients with chronic lymphocytic
leukaemia
(CLL) if a 3-week pause in Bruton tyrosine kinase inhibitor therapy (BTKi) starting 1 week before delivery of SARS-CoV-2 vaccine booster
gardening-girl
in
CLL Support
10 months ago
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD- replay, slides and transcript
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD https://www.lls.org/patient-education-webcasts/spotlight-chronic-lymphocytic-leukemia-cll https://youtu.be/6KziJk3zQ_I Topics Covered: Emerging therapies and clinical trials for CLL Managing side effects Strategies
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD https://www.lls.org/patient-education-webcasts/spotlight-chronic-lymphocytic-leukemia-cll https://youtu.be/6KziJk3zQ_I Topics Covered: Emerging therapies and clinical trials for CLL Managing side effects Strategies
lankisterguy
Volunteer
in
CLL Support
10 months ago
LET'S TALK CLL- Patients & Doctors Discuss the Latest Live! SATURDAY, OCTOBER 14, 2023 Virtual program starts at 10am CDT 11am EDT
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
lankisterguy
Volunteer
in
CLL Support
10 months ago
Shingrix availability on PBS in Australia from 1 November has been confirmed
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
CLLerinOz
Administrator
in
CLL Support
10 months ago
Richters Transformation
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
seoul1949
in
CLL Support
10 months ago
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