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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
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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
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
Jak2/tet2 mutation
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Ben2022
in
MPN Voice
1 year ago
flow cytometry is showing about 74% CLL involvement.
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53 negative. Mutated. He has splenomegaly, and enlarged nodes. Fish is in process. INTERPRETATION A phenotypically abnormal population with forward and right-angle scatter features of small lymphocytes constitutes
juniper1975
in
CLL Support
10 months ago
CLL and mRNA Vaccines
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
Just saw this abstract, which is one of the papers being presented at the Boston CLL conference: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004157 I don't understand most of it, but this is one of the "Findings": [i]CLL patients and other immunocompromised populations
BWHR
in
CLL Support
10 months ago
Epipen - Serious Nut Allergy
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
Joseph260268
in
Lung Conditions Community Forum
1 year ago
p17 deletion. Can anyone advise or cheer me up?!
Hi! I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphocytic leukaemia (CLL) and suspected Chronic myelomonocytic leukaemia (CMML), I have been still at early stage and not needing treatment. However, yesterday I received a copy of my consultant’s latest report with new blood
Hi! I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphocytic leukaemia (CLL) and suspected Chronic myelomonocytic leukaemia (CMML), I have been still at early stage and not needing treatment. However, yesterday I received a copy of my consultant’s latest report with new blood
Fogey
in
CLL Support
10 months ago
Ruxolitinib
Hi all, I have PV and AB is high , around 81% , spleen size slightly increased but if I didn’t know I have PV I would think I am the healthiest person around as I have no symptoms. I was diagnosed end of 2018 but had it al least since 2015. I am considering taking a part in clinical trial for Ruxo and
Hi all, I have PV and AB is high , around 81% , spleen size slightly increased but if I didn’t know I have PV I would think I am the healthiest person around as I have no symptoms. I was diagnosed end of 2018 but had it al least since 2015. I am considering taking a part in clinical trial for Ruxo and
Ameliav
in
MPN Voice
1 year ago
Ruxalitinib and Peg interferon
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
AS previously mentioned my husband {He has PV and MPN} has for the past 6 years been on Ruxolitinib . He has now been advised that owing to quite a few skin cancers the last one being Squamous skin cancer with extensive scalp debridement. All in all in past 3 years he has had approx 7/8 basil cell
waddles22
in
MPN Voice
1 year ago
Update.
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Jacksc06
in
CLL Support
10 months ago
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