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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
8 months 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
8 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
8 months ago
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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease
This is, of course, a thyroid forum. But all too many members mention Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other disorders. I'm posting this paper very largely for the [i]Treating comorbidities [/i]section which, though short, is [i]
highly
[/i] relevant to a considerable
This is, of course, a thyroid forum. But all too many members mention Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other disorders. I'm posting this paper very largely for the [i]Treating comorbidities [/i]section which, though short, is [i]
highly
[/i] relevant to a considerable
helvella
Thyroid UK
in
Thyroid UK
26 days ago
Hi everyone and Happy New Year
my name is Jill and it’s been along while since I’ve posted anything. I was diagnosed in 1999. Aged 39. Despite being very unwell for months and being ‘fobbed ’ off by my Gp. By the time I was diagnosed I had Saddle Nose deformity. Like alot of you even as a nurse I was very scared and felt alone
my name is Jill and it’s been along while since I’ve posted anything. I was diagnosed in 1999. Aged 39. Despite being very unwell for months and being ‘fobbed ’ off by my Gp. By the time I was diagnosed I had Saddle Nose deformity. Like alot of you even as a nurse I was very scared and felt alone
Essex-jill
in
Vasculitis UK
6 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
8 months 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
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
9 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
9 months ago
Prolia
I have just received an email from my GP who has arranged for a F2F appointment to see me beginning January to discuss me starting to take Prolia. My last Dexascan in 2021 did show that I have osteoporosis, and I did take Alendronic Acid for the first two years of having Polymyalgia. Since then I have
I have just received an email from my GP who has arranged for a F2F appointment to see me beginning January to discuss me starting to take Prolia. My last Dexascan in 2021 did show that I have osteoporosis, and I did take Alendronic Acid for the first two years of having Polymyalgia. Since then I have
Purplegloss
in
PMRGCAuk
6 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
9 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
9 months ago
What does having a NEW KIDNEY feel like?
Hi All, I have been in the transplant list for a year now and still waiting to get called. I can’t just help to wonder what having a kidney transplant will feel like. Apart from the fact that it will be a gift of life and freedom from being tied down to dialysis. What does it feel like? Will you
Hi All, I have been in the transplant list for a year now and still waiting to get called. I can’t just help to wonder what having a kidney transplant will feel like. Apart from the fact that it will be a gift of life and freedom from being tied down to dialysis. What does it feel like? Will you
Imaanforever
in
Kidney Dialysis
7 months 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
9 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
9 months 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
9 months 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
1 Year Anniversary (Nov 16)
Good evening, Yesterday, Nov 16, 2023, was the one year anniversary for my kidney transplant. Cindy (my donor kidney named after my good friend who helped me decide to pursue transplant eligibility testing) has been a trooper this year. She has soldiered forward without faltering as we’ve battled very
Good evening, Yesterday, Nov 16, 2023, was the one year anniversary for my kidney transplant. Cindy (my donor kidney named after my good friend who helped me decide to pursue transplant eligibility testing) has been a trooper this year. She has soldiered forward without faltering as we’ve battled very
Jayhawker
in
Kidney Dialysis
8 months ago
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