Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for July 2020

Itching

I think I will do 25 mg because the 10 mg I got from Dr. Is doing nothing. Thanks.

I think I will do 25 mg because the 10 mg I got from Dr. Is doing nothing. Thank...

Txnocally

•4 years ago

3 Replies

FCR veterans

hi all iam due to start fcr on the 11 august on flair trial not realy happy due to the covid ,well my question is will it work i have been on w&w for 7yrs i...

hi all iam due to start fcr on the 11 august on flair trial not realy happy due ...

kel555

•4 years ago

29 Replies

Light headed, nausea, diarrhea

Just finishing week 2 on imbruvica. No issues until today. Woke up lightheaded, nauseous, and diarrhea. Is this common?

Just finishing week 2 on imbruvica. No issues until today. Woke up lighthead...

Cali69

•4 years ago

11 Replies

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An investigation into the fake Richters is about to open

Hi all. Yesterday an investigator contacted me. He has proposed an extensive study to know how RT behaves once Ibrutinib is withdrawn. Patients with RT are...

Hi all. Yesterday an investigator contacted me. He has proposed an extensive stu...

Priss69

•4 years ago

48 Replies

The Fast 800

Someone posted on here about the Keto diet a few months ago. I thought that I'd look into it as the author of the post has such positive results from it. In...

Someone posted on here about the Keto diet a few months ago. I thought that I'd ...

Floxxy

•4 years ago

25 Replies

Treatment for Dog and CLLLymphoma?

Hello -odd question but has anyone heard of inbrutnib being used and effective in a dog with CLL/lymphoma?

Hello -odd question but has anyone heard of inbrutnib being used and effective i...

zenmadre

•4 years ago

7 Replies

TCell CLL and breast cancer

Hi, I have T cell lymphatosis on watch and wait , my recent CT scan shows raised lymph nodes in neck , shoulder blades & axila , also multiple nodules in the...

Hi, I have T cell lymphatosis on watch and wait , my recent CT scan shows raised...

333butterfly

•4 years ago

4 Replies

T cell leukemia

Just diagnosed with T cell leukemia, I do not have a subtype yet. Any other T cell types out there?

Just diagnosed with T cell leukemia, I do not have a subtype yet. Any other T ...

Mom-mom-e

•4 years ago

9 Replies

Fasting for 3 days

Has anyone got any informed advice or experience about fasting? I'm on Watch and wait (UK) and heard that fasting for 3 days can help the immune system. I read...

Has anyone got any informed advice or experience about fasting? I'm on Watch and...

Alobs

•4 years ago

15 Replies

Shingrix, CLL patients younger than 50?

Should CLL patients below 50 get a Shingrix vaccine? Any Shingrix article I found mentions that Shingrix is for people above 50. Some articles say Shingrix is...

Should CLL patients below 50 get a Shingrix vaccine? Any Shingrix article I foun...

mantana

•4 years ago

1 Reply

On the possible use of mushrooms and natural supplements, and their potential benefits, with citations

The following post provides information and NON-MEDICAL advice I've come across that I'll be presenting to my oncologist tomorrow. I thought it might be of...

The following post provides information and NON-MEDICAL advice I've come across ...

Pogee

•4 years ago

28 Replies

Imbruvica-related issues: Qs + comments

The following are questions and comments I'll be asking my oncologist when I see him tomorrow. I believe at least some of them might be relevant to what some...

The following are questions and comments I'll be asking my oncologist when I see...

Pogee

•4 years ago

28 Replies

CLL and armpit lymph nodes

I was diagnosed with CLL last month and now have some swollen lymph nodes in my two armpits and It hurts. Doctor put me on wait and watch, but I am asking if...

I was diagnosed with CLL last month and now have some swollen lymph nodes in my ...

Egypt58

•4 years ago

13 Replies

What infections are likely during neutropenia from mAb's?

Hi, I recently had a gallbladder infection during neutropenia and it was scary and took hospitalization to resolve. The neutropenia was very deep (neutrophils...

Hi, I recently had a gallbladder infection during neutropenia and it was scary a...

PhotonPal

•4 years ago

23 Replies

What causes neutrophils to go so low after Obinutuzumab?

This is kind of a geeky question but has really been preoccupying me following a first Omab infusion that took my N count to zero for several days. I'd like to...

This is kind of a geeky question but has really been preoccupying me following a...

PhotonPal

•4 years ago

25 Replies

Cramps and muscle spasms

I have been on Ibrutinib for 18 months and doing great! All numbers Of bloodwork we’re in normal range since November of 2019. Other than some mouth sores and...

I have been on Ibrutinib for 18 months and doing great! All numbers Of bloodwor...

210savannah

•4 years ago

65 Replies

Leukaemia Care Webinar: Navigating changes as shielding pauses

Leukaemia Care Webinar: Navigating changes as shielding pauses’ Date: 4th August, Time: 2.30 pm. UK time Guest panel: We’ll be joined by: Prof Chris Fegan...

Leukaemia Care Webinar: Navigating changes as shielding pauses’ Date: 4th August...

Jm954

Administrator•4 years ago

10 Replies

WBC count has come down

Hello everyone. Firstly I must thank the group because of which I got to know so much about CLL. Now myself and my husband are having peaceful days. In my last...

Hello everyone. Firstly I must thank the group because of which I got to know so...

Shirumati

•4 years ago

7 Replies

Race for Covid-19 Vaccine Explained

I’ve posted Siouxsie’s and Toby’s explanations before on all things Covid-19 related including how it spreads so easily. So this is on the race for a vaccine....

I’ve posted Siouxsie’s and Toby’s explanations before on all things Covid-19 rel...

YelvertonDevon

•4 years ago

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FCR

I’ll avoid FCR at all. Dangerous and tricky. Increase the probability of AL occurrence as well as second neoplasm and Richter transformation in the long run....

I’ll avoid FCR at all. Dangerous and tricky. Increase the probability of AL occu...

Rccfrc00

•4 years ago

9 Replies

Prognostic testing should be done before each and every CLL treatment decision

Test Before Treat Survey How much do you know about the critical tests which can predict which patients will do well on or fail certain medications? Prognostic...

Test Before Treat Survey How much do you know about the critical tests which can...

bkoffman

CLL CURE Hero•4 years ago

19 Replies

Weight Loss

Hello CLL Family, Hope all is going well withveach and everyone ! I was diagnosed with CLL May 2018. I am still on "wait & watch", having no treatments. At...

Hello CLL Family, Hope all is going well withveach and everyone ! I was diagnose...

CouldBworse

•4 years ago

9 Replies

Monitoring the basics

Hi I have been looking at the various posts on this forum over the last few months and am learning a lot about my CLL from all of you (big thanks to everyone)....

Hi I have been looking at the various posts on this forum over the last few mont...

Ageon

•4 years ago

12 Replies

Acalabrutinib rash

Hi everyone. Just wondering if anyone has experienced a rash while on Acalabrutinib? If so What treatments were effective? I developed one in the first weeks...

Hi everyone. Just wondering if anyone has experienced a rash while on Acalabruti...

Direstraits12

•4 years ago

3 Replies

flair ..fcr

hi all i have had cll from 2012 i have been on w&w my question is i have signed up for the flair trail Manchester Christie i got phone call this week saying i...

hi all i have had cll from 2012 i have been on w&w my question is i have signed ...

kel555

•4 years ago

16 Replies

Erythrocytes in Urine

Hi I recently started Ibrutinib on July 14th at 420 mg per day. The good news is all of my previously visible lymph nodes have disappeared. The bad news is on...

Hi I recently started Ibrutinib on July 14th at 420 mg per day. The good news is...

Murman

•4 years ago

2 Replies

Documented remission without drugs

I've just come across an article on a remarkable, well-documented, case of a younger man with CLL who, over time, achieved complete remission without drugs....

I've just come across an article on a remarkable, well-documented, case of a you...

Pogee

•4 years ago

52 Replies

Mushrooms and CLL

I've just joined this forum, and am already amazed at the depth of knowledge that Neil has and your depth of compassion, Johne1. I'm currently reading about...

I've just joined this forum, and am already amazed at the depth of knowledge tha...

Pogee

•4 years ago

39 Replies

Muscle fatigue and height WBC

1 week into imbruvica. Experiencing muscle fatigue and weakness. WBC went from 55 to 215. Dr said it’s normal. Anyone have any suggestions for dealing...

1 week into imbruvica. Experiencing muscle fatigue and weakness. WBC went fr...

Cali69

•4 years ago

5 Replies

Thank You, Administrators and All!!

Finding this Community has been so helpful, on many levels. AussieNeil, Jm954, and Newdawn, thank you for all your answers and great information you share!!!...

Finding this Community has been so helpful, on many levels. AussieNeil, Jm954, a...

Hidden

•4 years ago

23 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2020

Itching

FCR veterans

Light headed, nausea, diarrhea

An investigation into the fake Richters is about to open

The Fast 800

Treatment for Dog and CLLLymphoma?

TCell CLL and breast cancer

T cell leukemia

Fasting for 3 days

Shingrix, CLL patients younger than 50?

On the possible use of mushrooms and natural supplements, and their potential benefits, with citations

Imbruvica-related issues: Qs + comments

CLL and armpit lymph nodes

What infections are likely during neutropenia from mAb's?

What causes neutrophils to go so low after Obinutuzumab?

Cramps and muscle spasms

Leukaemia Care Webinar: Navigating changes as shielding pauses

WBC count has come down

Race for Covid-19 Vaccine Explained

FCR

Prognostic testing should be done before each and every CLL treatment decision

Weight Loss

Monitoring the basics

Acalabrutinib rash

flair ..fcr

Erythrocytes in Urine

Documented remission without drugs

Mushrooms and CLL

Muscle fatigue and height WBC

Thank You, Administrators and All!!

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