Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for September 2023

MRD testing not offered

I'm about mid way through the O+V journey. I asked my hemo/oncologist about MRD testing when its over and he replied (as I've since ready many times) that MRD...

I'm about mid way through the O+V journey. I asked my hemo/oncologist about MRD...

xpetes

•1 year ago

14 Replies

CMV PCR for blood <2.0E+2 IU/mL

Does anyone know what this means. It showed up on my bloodwork for the first time. I am in a clinical trial and am currently taking Idelalisib. The rest of my...

Does anyone know what this means. It showed up on my bloodwork for the first tim...

rcusher

•1 year ago

2 Replies

Acatrutinib- Rheumatoid arthritis

Hello Anybody taking Acalabrutinib developed rheumatoid arthritis? thanks

Tomaljoe69

•1 year ago

6 Replies

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CLL and Sauna

Hello…. I’m a CLL patient on Ibrutinib for almost 6 years. My husband is a Sauna fan, he is even making one at home and he’s always asking me to go … i’m not...

Hello…. I’m a CLL patient on Ibrutinib for almost 6 years. My husband is a Sauna...

Deta

•1 year ago

8 Replies

USA only - Medicare Open Enrollment starts October 15! It's your chance to review or change your prescription drug coverage for next year

Note: I have altered a much broader message from Medicare since we CLL patients realistically only have the option of changing our Part D drug plan. And...

Note: I have altered a much broader message from Medicare since we CLL patients...

lankisterguy

Volunteer•1 year ago

17 Replies

Tumor Lysis Syndrome

As a result of developing tumor lysis syndrome 2021 while in the hospital (receiving Ven,) my kidneys were affected. This week I will have a kidney stent...

As a result of developing tumor lysis syndrome 2021 while in the hospital (recei...

bayside64

•1 year ago

2 Replies

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...

Trial registration number ISRCTN14197181 https://bmjopen.bmj.com/content/13/9/e...

gardening-girl

•1 year ago

4 Replies

covid

Have just had the Pfizer Covid jab will keep you informed as to what if any side effects I have. Fingers crossed for none🤞

Have just had the Pfizer Covid jab will keep you informed as to what if any side...

Givemestrength23

•1 year ago

15 Replies

It Had To Happen!! Covid-19 Strikes!

It has been 18 months since I completed my CLL Obinutuzumab plus Venclexta treatment protocol. I was in remission. I have had four Covid-19 vaccinations and...

It has been 18 months since I completed my CLL Obinutuzumab plus Venclexta treat...

DanBro1

•1 year ago

3 Replies

RSV vaccination

I'm having trouble getting the new RSV vaccination that my hematologist recommended (in addition to my annual flu shot and the latest Covid booster)....

I'm having trouble getting the new RSV vaccination that my hematologist recommen...

TeamDirtyBoots

•1 year ago

8 Replies

Uveitus

hi after attending A&E on sept 1st with sore right eye was told I had scratched it and antibiotic cream was given to me to use and ophthalmic dept would ring...

hi after attending A&E on sept 1st with sore right eye was told I had scratched ...

mush56

•1 year ago

9 Replies

Here we go again!

At my last hospital appointment in February I asked the consultant about his thoughts on masking still and he suggested that as we are having to live with it...

At my last hospital appointment in February I asked the consultant about his tho...

Jetliz

•1 year ago

11 Replies

Covid booster after positive status

I had Covid about two months ago and have read that one should wait six months afterwards to get the latest booster. Does this apply to someone with CLL?...

I had Covid about two months ago and have read that one should wait six months a...

Ngtinfu

•1 year ago

8 Replies

Pirtobrutinib triple trial Cycle 7 update

Hi, ya'll! I'm now finishing up Cycle 8 of: Time-limited Triplet Combination of Pirtobrutinib, Venetoclax, and Obinutuzumab for Patients With...

Hi, ya'll! I'm now finishing up Cycle 8 of: Time-limited Triplet Combination o...

SeymourB

•1 year ago

56 Replies

Shindrix Shingles Jab

Hello I’m a 80 year old woman who has CLL for the past 22 years and recently booked an appointment at my surgery for the Shindrix Jab but was told I couldn’t...

Hello I’m a 80 year old woman who has CLL for the past 22 years and recently bo...

SteepleMordenGal

•1 year ago

15 Replies

pain under left rib

After speaking with the hospital team regarding the pain under my left rib I have been told it is unlikely to be CLL related as my bloods are stable. I...

After speaking with the hospital team regarding the pain under my left rib I hav...

keeptalking

•1 year ago

6 Replies

What can happen with V+O in 3 months

I understand we are all different and our our experiences are different. I am writing this to share what has transpired for me as an potential example...

I understand we are all different and our our experiences are different. I am wr...

Rico49

•1 year ago

2 Replies

Vaccines – at what point do they become a disbenefit?

I need to state out front that I’m not anti vaccination, I believe in the benefits having had several as a kid and now 6 anti COVID doses. But I’m now being...

I need to state out front that I’m not anti vaccination, I believe in the benefi...

IWVC

•1 year ago

15 Replies

2023 Flue Shot

Has anyone else taken this years flue shot and gotten abnormally ill from it? Not to dissuade anyone from taking this years shot but I was sick nearly a weak....

Has anyone else taken this years flue shot and gotten abnormally ill from it? No...

Rando21

•1 year ago

30 Replies

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 it likely that treatment might be needed in the near future? Husband is triso...

juniper1975

•1 year ago

13 Replies

CLL and mRNA Vaccines

Just saw this abstract, which is one of the papers being presented at the Boston CLL conference:...

Just saw this abstract, which is one of the papers being presented at the Boston...

BWHR

•1 year ago

11 Replies

STATIC dilemma

Hi I am coming up to year 6 on the Flair trial, on the ibrutinib and rituximab arm. Ibrutinib has worked very well for me with none of the major side...

Hi I am coming up to year 6 on the Flair trial, on the ibrutinib and rituximab a...

annmcgowan

•1 year ago

14 Replies

Static trial dilemma

Hi I am about to complete the Flair Trial, having completed 6 years on the ibrutinib and rituximab arm in March 2024. I have decided to follow through with...

Hi I am about to complete the Flair Trial, having completed 6 years on the ibrut...

annmcgowan

•1 year ago

24 Replies

how many area of lymph nodes would warrant treatment

how many area of lymph nodes would warrant treatment… I have several lymph nodes on both sides of my neck one at the base of my skull one under my chin and...

how many area of lymph nodes would warrant treatment… I have several lymph nodes...

Maxi444

•1 year ago

12 Replies

IVIG - how soon does it benefit?

My husband - CLL, on Calquence since April 2021 - has begun a schedule of monthly IVIG, mainly because he had 2 life threatening infections late spring/early...

My husband - CLL, on Calquence since April 2021 - has begun a schedule of month...

OaktownA

•1 year ago

10 Replies

Guidelines Recommend Mindfulness-Based Interventions for Anxiety and Depression During Cancer Treatment

Adults with cancer can benefit from mindfulness-based interventions and other therapies to manage symptoms of anxiety and depression. Guidelines now recommend...

Adults with cancer can benefit from mindfulness-based interventions and other th...

Katie-LMHC-Artist

•1 year ago

9 Replies

Reducing or Eliminating Alcohol

Those with CLL are more prone to secondary cancers. This article is from "Cure" magazine: https://www.curetoday.com/ Cancer survivors who consume alcohol may...

Those with CLL are more prone to secondary cancers. This article is from "Cure" ...

Katie-LMHC-Artist

•1 year ago

11 Replies

International Workshop on CLL, October 6-9 in Boston

Some of the abstracts may be of interest. Here is a link. CLL specialists attending from all over the world. Others are fighting hard on our behalf!!!......

Some of the abstracts may be of interest. Here is a link. CLL specialists atten...

Katie-LMHC-Artist

•1 year ago

6 Replies

Ibrutinib failure

Hi folks,I’m lying here in hospital UK where I’ve been for the last 8 days,just looking for a few pointers.A couple of months ago my glands were out of...

Hi folks,I’m lying here in hospital UK where I’ve been for the last 8 days,just ...

Nickos66

•1 year ago

43 Replies

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...

Hi! I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphoc...

Fogey

•1 year ago

53 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2023

MRD testing not offered

CMV PCR for blood <2.0E+2 IU/mL

Acatrutinib- Rheumatoid arthritis

CLL and Sauna

USA only - Medicare Open Enrollment starts October 15! It's your chance to review or change your prescription drug coverage for next year

Tumor Lysis Syndrome

A trial examining the effects of pausing BTKis to coincide with SARS-CoV-2 vaccination and its impact on immune responses in CLL patients

covid

It Had To Happen!! Covid-19 Strikes!

RSV vaccination

Uveitus

Here we go again!

Covid booster after positive status

Pirtobrutinib triple trial Cycle 7 update

Shindrix Shingles Jab

pain under left rib

What can happen with V+O in 3 months

Vaccines – at what point do they become a disbenefit?

2023 Flue Shot

flow cytometry is showing about 74% CLL involvement.

CLL and mRNA Vaccines

STATIC dilemma

Static trial dilemma

how many area of lymph nodes would warrant treatment

IVIG - how soon does it benefit?

Guidelines Recommend Mindfulness-Based Interventions for Anxiety and Depression During Cancer Treatment

Reducing or Eliminating Alcohol

International Workshop on CLL, October 6-9 in Boston

Ibrutinib failure

p17 deletion. Can anyone advise or cheer me up?!

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