Posts - CLL Support | HealthUnlocked

CLL Support

22,865 members • 39,227 posts

All posts for January 2023

Best exercise for CLLers?

Hello, I remember I think AussieNeil saying that perhaps exercise was perhaps the golden bullet for CLL*. I've had a cough for about a month like most of the...

Hello, I remember I think AussieNeil saying that perhaps exercise was perhaps th...

Research123

•2 years ago

52 Replies

CHRISTMAS DAY

Today on my CHRISTMAS DAY: CHRIST IS BORN! To all who celebrate the holiday of peace,faith and hope.🍀❤️🥰

Today on my CHRISTMAS DAY: CHRIST IS BORN! To all who celebrate the holiday of...

Name-1

•2 years ago

15 Replies

How long before resuming ibrutinib after just ONE dose of Paxlovid?

I got a false positive Covid test yesterday so I got a prescription for Paxlovid. I also got a PCR test. It came back negative as did another at-home test....

I got a false positive Covid test yesterday so I got a prescription for Paxlovid...

Ngtinfu

•2 years ago

4 Replies

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Some good Clonoseq results

I just wanted to share that I received some positive news from Clonoseq blood test. This is a blood test for MRD. It did not detect any CLL. So, my doctor...

I just wanted to share that I received some positive news from Clonoseq blood te...

Kvb-texas

•2 years ago

5 Replies

Bone marrow biopsy incomplete

Hi , I’m new in the web. My platelets always are high so my doctor order the bone marrow aspiration and biopsy. He suspects is ET. The fluid aspiration was...

Hi , I’m new in the web. My platelets always are high so my doctor order the bon...

Cusube1967

•2 years ago

13 Replies

WBC rising

After 2 years in remission post B+R my white count is starting to go up. In Aug. it was 7.925, Dec 8 was 11.78, and last week was 15.05. I have to go for...

After 2 years in remission post B+R my white count is starting to go up. In Aug...

Moonmyst

•2 years ago

9 Replies

CLL Staging

Hello. My husband, Simon, was diagnosed with CLL several years ago and has been closely monitored. On his last visit to his consultant he was told that he...

Hello. My husband, Simon, was diagnosed with CLL several years ago and has been ...

Rocky0181

•2 years ago

24 Replies

Extreme fatigue with Rituximab and Venetoclax 24-month regimen

Hello everybody and best wishes for a healthy, happy and peaceful year. I am male, 73, diagnosed with CLL 11 years ago. IGHV mutated and no TP53 mutation or...

Hello everybody and best wishes for a healthy, happy and peaceful year. I am ma...

RamsesII

•2 years ago

6 Replies

Questions about lab results

Hi all, I was diagnosed (to my surprise like all of us I am sure!) with CLL 6 years ago. Still in watch and wait and hoping that continues. I live in the US...

Hi all, I was diagnosed (to my surprise like all of us I am sure!) with CLL 6 y...

Poolgirl

•2 years ago

8 Replies

A tip for Australians with Chronic Lymphocytic Leukemia trying to access pneumococcal vaccination through the National Immunisation Program

What a morning I've had to get my third pneumococcal vaccine. I'll share the details here as the solution I found could help others with CLL in Australia who...

What a morning I've had to get my third pneumococcal vaccine. I'll share the de...

CLLerinOz

Administrator•2 years ago

1 Reply

CMDU working much better than last time.

10 months ago when I last tested positive for Covid the CMDU rang within 24 hours but due to misinterpretation (I think) of the medication that I said I was...

10 months ago when I last tested positive for Covid the CMDU rang within 24 hour...

Snellybob

•2 years ago

7 Replies

NEW DISCOVERIES WITH RICHTERS

I just read an article that I felt would interest a significant number of our members, so I'm providing a link to it here:...

I just read an article that I felt would interest a significant number of our me...

wizzard166

•2 years ago

11 Replies

After diagnosted with CLL I lost

Hi my name is Rabah from Columbus, ohio 45 years old with two kids 5 years and 9 years old I got CLL last year September 2021 and just two months ago 2022...

Hi my name is Rabah from Columbus, ohio 45 years old with two kids 5 years and 9...

Karate

•2 years ago

41 Replies

Rare COVID-19 vaccine complication linked to circulating spike protein in blood

bennevisplace

•2 years ago

13 Replies

Give me your best Covid remedies and advice

After dodging Covid for a couple years, today I tested positive. I have a headache, fever, dry cough, chills and sweats. Upon the advice of my doc at MD...

After dodging Covid for a couple years, today I tested positive. I have a head...

cajunjeff

•2 years ago

44 Replies

VenClexta and Typhlitis

Hi I’ve been on VenClexta for 8 months. Initially I had a lot of problems with nausea, Vomitting, weight loss. Now this is much more occasional as I received...

Hi I’ve been on VenClexta for 8 months. Initially I had a lot of problems with n...

999990Bruno

•2 years ago

3 Replies

Husband's last O Infusion rescheduled due to low Neutrophils and WBC

UPDATE: After a week off of all meds, Absolute Neutrofils have gone DOWN to .60, Absolute Eosinophils down to 0. He will start on GCSF Infusions tomorrow for 4...

UPDATE: After a week off of all meds, Absolute Neutrofils have gone DOWN to .60,...

lisakc1

•2 years ago

14 Replies

Travel Insurance

I’m hoping to holiday in the Caribbean this year and finding it difficult to find reasonably priced travel insurance which gives cover for CLL so wondered if...

I’m hoping to holiday in the Caribbean this year and finding it difficult to fin...

Chamberlayne

•2 years ago

6 Replies

Psoriatic Arthritis

Good morning, Does anyone have any experience with treatment for Psoriatic Arthritis? I am going to see a rheumatologist on Friday for the possibility of...

Good morning, Does anyone have any experience with treatment for Psoriatic Arth...

noeagaman

•2 years ago

17 Replies

CLL Society’s COVID-19 Update for the Week of January 2, 2023

Reading this on the CLL Society website is highly recommended to view the graphs and graphics mentioned. - Len CLL Society’s COVID-19 Update...

Reading this on the CLL Society website is highly recommended to view the graphs...

lankisterguy

Volunteer•2 years ago

7 Replies

10th Year CLL Anniversary - becoming 'Normal'

I was told the CLL diagnosis between Christmas and New Year in 2012, so I have just passed the 10th year. After a tricky first year with AIHA (and I was...

I was told the CLL diagnosis between Christmas and New Year in 2012, so I have j...

Quarry

•2 years ago

10 Replies

Seville Oranges/Pirtobrutinib 🍊

Does anyone know if Simply Orange Pulp-Free Orange Juice includes Seville oranges in the oranges it uses? It's made by the Coca-Cola company, it looked (from...

Does anyone know if Simply Orange Pulp-Free Orange Juice includes Seville orange...

turkey2

•2 years ago

4 Replies

You can help make Zanubrutinib available to CLL patients in Canada

Please participate in a survey to document patient experiences and needs for a submission to two Canadian agencies assessing Zanubrutinib. Please use the...

Please participate in a survey to document patient experiences and needs for a s...

CLL_Canada_Group

•2 years ago

1 Reply

Living with Cll

I just want to say that at first I was afraid to start treatment and waited longer than usual , I had a white blood cell count of 270,000 with no B symptoms ie...

I just want to say that at first I was afraid to start treatment and waited long...

starlifter

•2 years ago

7 Replies

Begs the question. If your doctor told you this medication will cause you to get the same disease again, would you take it??

Paxlovid

Friverapt

•2 years ago

21 Replies

HOLIDAY INSURANCE.

Hello everyone, I was diagnosed with CLL in August 2018 and so far have remained on watch and wait. In September 2019, I had successful surgery for colon...

Hello everyone, I was diagnosed with CLL in August 2018 and so far have remaine...

donevning2213

•2 years ago

9 Replies

Obinuzuzumab & venetoclax

Morning.. Could I just ask, for those on this treatment, did you need much time off work, i have completed cycle 1 & so far so good, we're any of you able to...

Morning.. Could I just ask, for those on this treatment, did you need much time ...

mfc86

•2 years ago

20 Replies

Increased Hearing Loss post hospitalisation

I have had CLL for more than 10 years and until recently just watch and wait under care of Haematologist and have otherwise been fit and well. However in 2022...

I have had CLL for more than 10 years and until recently just watch and wait und...

Hihohiho

•2 years ago

9 Replies

A New Year message from CLL Support.

We would like to use the occasion of this day, the first of a new year — a time for reflection — to express our deepest gratitude to all of you, our members,...

We would like to use the occasion of this day, the first of a new year — a time ...

pkguk2

Partner•2 years ago

20 Replies

PAXLOVID - What next

I tested positive for COVID over Christmas and received 5 days of Paxlovid. I am now testing negative. I understand that once you receive Paxlovid a rebound...

I tested positive for COVID over Christmas and received 5 days of Paxlovid. I a...

RobertCLL

•2 years ago

39 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2023

Best exercise for CLLers?

CHRISTMAS DAY

How long before resuming ibrutinib after just ONE dose of Paxlovid?

Some good Clonoseq results

Bone marrow biopsy incomplete

WBC rising

CLL Staging

Extreme fatigue with Rituximab and Venetoclax 24-month regimen

Questions about lab results

A tip for Australians with Chronic Lymphocytic Leukemia trying to access pneumococcal vaccination through the National Immunisation Program

CMDU working much better than last time.

NEW DISCOVERIES WITH RICHTERS

After diagnosted with CLL I lost

Rare COVID-19 vaccine complication linked to circulating spike protein in blood

Give me your best Covid remedies and advice

VenClexta and Typhlitis

Husband's last O Infusion rescheduled due to low Neutrophils and WBC

Travel Insurance

Psoriatic Arthritis

CLL Society’s COVID-19 Update for the Week of January 2, 2023

10th Year CLL Anniversary - becoming 'Normal'

Seville Oranges/Pirtobrutinib 🍊

You can help make Zanubrutinib available to CLL patients in Canada

Living with Cll

Begs the question. If your doctor told you this medication will cause you to get the same disease again, would you take it??

HOLIDAY INSURANCE.

Obinuzuzumab & venetoclax

Increased Hearing Loss post hospitalisation

A New Year message from CLL Support.

PAXLOVID - What next

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