Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for November 2022

I’m doing better

Its a long story. I started a post last night about my battle with stomach problems but deleted it because I didn’t have time to tell the whole story. I...

Its a long story. I started a post last night about my battle with stomach pro...

cajunjeff

•1 year ago

32 Replies

Latest Fish test results??

I just had another Fish test completed due to the fact that the Ibrutinib that I have been on for almost 5 years is not working as well anymore. In my first...

I just had another Fish test completed due to the fact that the Ibrutinib that I...

rcusher

•1 year ago

4 Replies

Chest Infection with Blood

I picked up a chest infection at my mothers a week ago, despite having a N95 on and opening the windows. I was subsequently prescribed antibiotics for a...

I picked up a chest infection at my mothers a week ago, despite having a N95 on ...

RobertCLL

•1 year ago

10 Replies

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Pasting text into message

I am unable to paste unformatted text into the body of a message. Any thoughts as to why this might be? I have written the message in another client and just...

I am unable to paste unformatted text into the body of a message. Any thoughts ...

RobertCLL

•1 year ago

6 Replies

Query re Blood Tests

I posted this on another HU forum but had no replies so am trying here. A friend recently died less than three weeks after diagnosis of lymph cancer...

I posted this on another HU forum but had no replies so am trying here. A frien...

MichaelJH

•1 year ago

3 Replies

Thanksgiving Gathering Cancelled - Covid (again) hits our Family.. Uggh

Well good news n bad news … The good news is our family members have been testing for covid prior to meeting with my wife n I (we both have cancer) for quite...

Well good news n bad news … The good news is our family members have been test...

Pin57

•1 year ago

16 Replies

can I take cholera vaccine? l have call

is cholera vaccine safe for cell patients?

Kotek

•1 year ago

2 Replies

Consultant recommendations

Hi I am looking for recommendations for a Consultant with CLL knowledge. I was diagnosed in 2017 while investigating repeated flu like illnesses and fatigue...

Hi I am looking for recommendations for a Consultant with CLL knowledge. I was d...

stevebran

•1 year ago

26 Replies

Calquence and flatulence

For a 2017 lymphoma diagnosis, I was on Imbruvica for 3 years. The past 2 years I have been on Calquence. The past 4 months or so, I have had increased...

For a 2017 lymphoma diagnosis, I was on Imbruvica for 3 years. The past 2 years...

Agatesup

•1 year ago

3 Replies

The failing effectiveness of COVID-19 monoclonal antibodies against BA.1, BA.4-5, BA.4.6, BA.2.75, BJ.1 and BQ.1.1

This post is in response to a couple of recent posts highlighting concerning changes in the effectiveness of our monoclonal antibody armament against new...

This post is in response to a couple of recent posts highlighting concerning cha...

AussieNeil

Administrator•1 year ago

11 Replies

Concise summary of the treatment history of CLL from the 1950s to the present, by Dr Bruce Cheson, contributor to the iwCLL and much more

I knew Chlorambucil use for CLL dated back to the 1950's but I hadn't appreciated that was also the case for cyclophosphamide, (the 'C' in FCR). It took until...

I knew Chlorambucil use for CLL dated back to the 1950's but I hadn't appreciate...

AussieNeil

Administrator•1 year ago

16 Replies

PCV20 pneumonia vaccination: Not yet injected by pharmacists.

Both my primary and my CLL medical providers had agreed that I could get the new PCV20 pneumonia vaccination. But I was just informed by the pharmacy...

Both my primary and my CLL medical providers had agreed that I could get the new...

janvog

•1 year ago

6 Replies

4 of 5 treatments for covid in immunocompromised being removed in NHS

mol.im/a/11447861 "Four Covid drugs which have kept thousands of vulnerable Britons out of hospital were quietly removed last week, after the NHS spending...

mol.im/a/11447861 "Four Covid drugs which have kept thousands of vulnerable Bri...

Harvist

•1 year ago

18 Replies

Initial Obinutuzumab (flush?)Reaction leading to ER

Hello there community, Just wanted to see if anyone had any insight on what happened or how? And if my chances are better the next time I try again, w/out...

Hello there community, Just wanted to see if anyone had any insight on what hap...

CoramDeo87

•1 year ago

19 Replies

Omega 3

Hi all, hope everyone is feeling well. My husband has CLL and has been taking Ibrutinib for 3-years. I just wondered if Omega 3 is something you can take...

Hi all, hope everyone is feeling well. My husband has CLL and has been taking I...

shellsb

•1 year ago

7 Replies

Cardiotoxicity in patients treated with acalabrutinib

The latest edition of the journal Blood has two articles that highlight the issue of cardiotoxicity in patients treated with acalabrutinib. The cardiotoxicity...

The latest edition of the journal Blood has two articles that highlight the issu...

CLLerinOz

Administrator•1 year ago

43 Replies

Allopurinol with V &O treatment for CLL

Has ànyone taken Allopurinol to prevent tumor lysis with Gazyva and Venclexta treatment? How long did you take it and has anyone had an allergic reaction to it?

Has ànyone taken Allopurinol to prevent tumor lysis with Gazyva and Venclexta tr...

Gradyboy

•1 year ago

36 Replies

Paxlovid and newly diagnosed

Hi all, I’ve tested postive for CoVId (this morning) and have been prescribed a 5 day course of Paxlovid. I was diagnosed with CLL exactly a month ago today....

Hi all, I’ve tested postive for CoVId (this morning) and have been prescribed a ...

T7374

•1 year ago

5 Replies

Treatment-naive or relapsed CLL patients will soon have zanubrutinib/Brukinsa as a treatment option in the EU

The EC approval is based on positive results from two Phase 3 clinical trials: SEQUOIA (NCT03336333), in patients with previously untreated CLL, and ALPINE...

The EC approval is based on positive results from two Phase 3 clinical trials: S...

AussieNeil

Administrator•1 year ago

18 Replies

Wine with meals

Is a glass of wine still ok with a meal... I'm awaiting CLL confirmation

Stew64

•1 year ago

16 Replies

Sleep and 5-HTP

I have no trouble going to sleep of a night, but wake up in the night for hours. My mind is so over active, I try counting from 100 down, but get easily...

I have no trouble going to sleep of a night, but wake up in the night for hours....

RobertCLL

•1 year ago

11 Replies

What to ask The Haematologist

I have my first meeting with a Haematologist on Tuesday..What are the important questions to ask...I'm so anxious that I might not have the focus to think..

I have my first meeting with a Haematologist on Tuesday..What are the important ...

Stew64

•1 year ago

9 Replies

What Does My Lymphocyte Count Mean? An explanation by Dr. Susan LeClair on Patient Power

What Does My Lymphocyte Count Mean? An explanation by Dr. Susan LeClair on Patient Power...

What Does My Lymphocyte Count Mean? An explanation by Dr. Susan LeClair on Pati...

lankisterguy

Volunteer•1 year ago

5 Replies

Any problems with EvuSheld and Alcabrutinib?

Does anyone in this great community have feedback on whether getting jabbed with EvuSheld when on Alcabrutinib/Calquence is effective and/or problematic? Here...

Does anyone in this great community have feedback on whether getting jabbed with...

Me2AsWell

•1 year ago

12 Replies

Norvovirus and CLL/immunocompromised

Has anyone in this CLL community had success in treating Norvovirus? I have not been tested but Norvovirus is prominent in my area (also referred to as the...

Has anyone in this CLL community had success in treating Norvovirus? I have n...

Otterblue2

•1 year ago

18 Replies

Has anyone tried Hydroxychloroquin for CLL?

There are studies showing HCQ causes apoptosis in CLL, lowering the WBC. Did anyone take HCQ for covid and find their WBC dropped?

There are studies showing HCQ causes apoptosis in CLL, lowering the WBC. Did an...

sharksalive

•1 year ago

7 Replies

Toxic poppy seeds are sending people to hospital in Australia. A reminder that dietary supplements are considered as foods, not drugs

If you are using supplements to hopefully manage your CLL, here is an example of why what's natural can make you very ill and why you need to ensure that you...

If you are using supplements to hopefully manage your CLL, here is an example of...

AussieNeil

Administrator•1 year ago

11 Replies

Neem extract nimbolide

Just found about it, does anybody tried it ? https://www.nature.com/articles/bcj201474 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7891886/

Just found about it, does anybody tried it ? https://www.nature.com/articles/bcj...

Pvasile

•1 year ago

25 Replies

PCV 20 Guidelines ? Get 20 if you already had 13 and 23 - or not ?

One pharmacist in Florida refused to give PCV 20 "because guidelines say that if you had other previous pneumo vaccinations you do not need PCV 20 !" I got...

One pharmacist in Florida refused to give PCV 20 "because guidelines say that if...

janvog

•1 year ago

12 Replies

Visit to Blood Doctor

Attended clinic today not good news but not as bad as I thought, amimia is getting worse, spleen enlarged, to see him again in 6 weeks instead of 6 months....

Attended clinic today not good news but not as bad as I thought, amimia is getti...

Derekinblack

•1 year ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for November 2022

I’m doing better

Latest Fish test results??

Chest Infection with Blood

Pasting text into message

Query re Blood Tests

Thanksgiving Gathering Cancelled - Covid (again) hits our Family.. Uggh

can I take cholera vaccine? l have call

Consultant recommendations

Calquence and flatulence

The failing effectiveness of COVID-19 monoclonal antibodies against BA.1, BA.4-5, BA.4.6, BA.2.75, BJ.1 and BQ.1.1

Concise summary of the treatment history of CLL from the 1950s to the present, by Dr Bruce Cheson, contributor to the iwCLL and much more

PCV20 pneumonia vaccination: Not yet injected by pharmacists.

4 of 5 treatments for covid in immunocompromised being removed in NHS

Initial Obinutuzumab (flush?)Reaction leading to ER

Omega 3

Cardiotoxicity in patients treated with acalabrutinib

Allopurinol with V &O treatment for CLL

Paxlovid and newly diagnosed

Treatment-naive or relapsed CLL patients will soon have zanubrutinib/Brukinsa as a treatment option in the EU

Wine with meals

Sleep and 5-HTP

What to ask The Haematologist

What Does My Lymphocyte Count Mean? An explanation by Dr. Susan LeClair on Patient Power

Any problems with EvuSheld and Alcabrutinib?

Norvovirus and CLL/immunocompromised

Has anyone tried Hydroxychloroquin for CLL?

Toxic poppy seeds are sending people to hospital in Australia. A reminder that dietary supplements are considered as foods, not drugs

Neem extract nimbolide

PCV 20 Guidelines ? Get 20 if you already had 13 and 23 - or not ?

Visit to Blood Doctor

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