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Living with CLL_SLL posts

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Sudden allergy to dogs

Hi all, I'm a 73-year-old man living in Arizona and I have had CLL for 10 years and still w/w. I have always had pet dogs. In the last 6 months, somehow I've...

Hi all, I'm a 73-year-old man living in Arizona and I have had CLL for 10 years ...

SunnyDan

•1 day ago

7 Replies

shingles

Hi everyone, I’ve been unfortunate to get shingles and I have been in agony with it. I didn’t get to see the doctor for three days before starting with the...

Hi everyone, I’ve been unfortunate to get shingles and I have been in agony wit...

Headers

•7 days ago

40 Replies

CLL and sleep issues

Hi, CLLers, I’ve been absent from this site for some time so just a recap- CLL diagnosed 5 years ago, on watch and wait. my question: is anyone having sleep...

Hi, CLLers, I’ve been absent from this site for some time so just a recap- CLL d...

LisaAlice

•2 months ago

32 Replies

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aspirin when withholding ibrutinib

I took a daily low dose aspirin before I started ibrutinib in 2019, as I had had a TIA in 2013. Once I started ibrutinib, it sufficed. I am withholding...

I took a daily low dose aspirin before I started ibrutinib in 2019, as I had had...

ElMaga

•3 months ago

2 Replies

Over reactive 1st Obin Treatment.

First dose of 100 mcg July 8th and 900 mcg July 9th. After treatment never came back to feeling 90-100%. This past Tuesday returned for round 2. Never made...

First dose of 100 mcg July 8th and 900 mcg July 9th. After treatment never cam...

DAmen

•4 months ago

18 Replies

When We Have CLL, Why We Need Particularly need an Immunome. (Why neutrophil and immunoglobulin counts don't measure immunity all that well)

What if our doctors could recommend IgG replacement therapy (IGIV or subcutaneous IgG) before we became seriously ill, preventing that risk to...

What if our doctors could recommend IgG replacement therapy (IGIV or subcutaneou...

AussieNeil

Administrator•4 months ago

9 Replies

21Bedlam21

I have had CLL for a couple of years now. I am on watch and wait. I have posted on this sight before. I had reconstruction from my breast cancer a number of...

I have had CLL for a couple of years now. I am on watch and wait. I have posted ...

21Bedlam21

•5 months ago

31 Replies

Exercise for aging people: where to begin, and how to minimize risk while maximizing potential, by Peter Attia M.D.

Further to this recent post on how exercise can boost immune protection...

bennevisplace

•5 months ago

11 Replies

Fatigue

Does anyone have any tips for managing fatigue - I find this overtakes my life daily, and if I do anything it can take me days, even a week, to recover!

Does anyone have any tips for managing fatigue - I find this overtakes my life d...

Alibaba26

•5 months ago

29 Replies

IgG Testing, Immunoglobulin Replacement Therapy, and Infection Outcomes in Patients with CLL or NHL: Real-World Evidence

CLL is well characterised as a cancer of the immune system, hence CLL specialists recommend keeping up to date with non-live vaccinations...

CLL is well characterised as a cancer of the immune system, hence CLL specialist...

AussieNeil

Administrator•5 months ago

8 Replies

Recent Chest CT scan to check for SLL progression, June 7, 2024 (part 2 of 2 posts)

IMPRESSION- Compared to May 30, 2024 The following is the chest CT scan. I'd appreciate your words of wisdom, encouragement, and advise. Treatment, it...

IMPRESSION- Compared to May 30, 2024 The following is the chest CT scan. I'd...

bagelstreet225

•6 months ago

40 Replies

Recent CT abdomen and pelvis scan to check for SLL progression, June 7, 2024 (part 1 of 2 posts)

I was diagnosed on May 25, 2023, and classified as watch and wait. Treatment, I believe, is warranted. I'll see the hem/onc on June 20, 2024. I'd greatly...

I was diagnosed on May 25, 2023, and classified as watch and wait. Treatment, I...

bagelstreet225

•6 months ago

Sepsis - a timely reminder

“The paramedics were reluctant to take me in,” he said. “They thought I should go and see my GP. I could have gone back to sleep. And I would have died I...

“The paramedics were reluctant to take me in,” he said. “They thought I should g...

bennevisplace

•6 months ago

41 Replies

"Natural hack" to boost immune system

Hello everyone, I've gotten such helpful answers in this group, I want to add my "hack" in case it helps someone. So I've a tendency to mouth infections (&...

Hello everyone, I've gotten such helpful answers in this group, I want to add m...

LadyLuckyLuna

•7 months ago

2 Replies

Determining if you'll never need treatment. It is feasible and safe to stop specialized follow-up of asymptomatic lower risk CLL?

Regular readers will have often heard that around 30% of those diagnosed with CLL never need treatment. So how is it determined whether you fall into that...

Regular readers will have often heard that around 30% of those diagnosed with CL...

AussieNeil

Administrator•7 months ago

24 Replies

Low vitamin d high serum ferritin

Hello My husband has been on watch and wait for 12 years. Due to a constant chronic cough he recently had a blood test which showed low vitamin D levels of 45...

Hello My husband has been on watch and wait for 12 years. Due to a constant chro...

Debs4

•7 months ago

12 Replies

brukinsa cll patient

cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 and lymphocyte absolute count of 27.6 should i be concerned.

cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 a...

ceciljr1958

•8 months ago

4 Replies

CLL survival times ARE improving, thanks to BTK and BCL-2 inhibitors

Many of us were shocked after our CLL/SLL diagnosis when we googled for survival times. Hopefully we subsequently read that search engine information...

Many of us were shocked after our CLL/SLL diagnosis when we googled for survival...

AussieNeil

Administrator•8 months ago

10 Replies

Tinnitus & CLL

Hi I was diagnosed with CLL a year ago and not currently on any treatment . However, since January I have suffered from continuous Tinnitus , day and night ....

Hi I was diagnosed with CLL a year ago and not currently on any treatment . Ho...

Ternheim1967

•9 months ago

15 Replies

Latest COVID-19 guide for immunocompromised blood cancer patients from the International COVID-19 Blood Cancer Coalition (ICBCC)

The latest Patient Impact Statement has been released by the International COVID-19 Blood Cancer Coalition (ICBCC). Titled "Navigating a post-pandemic...

The latest Patient Impact Statement has been released by the International COVID...

CLLerinOz

Administrator•10 months ago

10 Replies

cll and associated skin disorder

I was treated for CLL with Venetoclax for a year ending last April. It was very effective. Half-way through the treatment I developed a skin rash on arms and...

I was treated for CLL with Venetoclax for a year ending last April. It was very ...

nigeldodd

•11 months ago

13 Replies

New to an on line community

Never been evolved in an on line community before and not sure how to get the best out of it

Never been evolved in an on line community before and not sure how to get the be...

Geministars

•11 months ago

7 Replies

Shingrix availability on PBS in Australia from 1 November has been confirmed

SEE THIS REPLY for the latest update to this post:...

CLLerinOz

Administrator•1 year ago

3 Replies

Lymphatic drainage massages

After reading CLL is dormant in the blood stream but active in the lymph nodes I wondered if it might be be beneficial to keep the cells circulating out of the...

After reading CLL is dormant in the blood stream but active in the lymph nodes I...

Rando21

•1 year ago

4 Replies

4 weeks of Rituximab

I just finished 4 weeks of Rituximab 750ml once a week. Diagnosed cll 2019 at 42 developed Pure red cell aplasia at the start of this year. Only side affects...

I just finished 4 weeks of Rituximab 750ml once a week. Diagnosed cll 2019 at 4...

Jimmy_9

•1 year ago

14 Replies

Wearing a mask!

My wife has cll diagnosed in June of 2012. She is currently on Venclexta. My question I am sure has been discussed before. She goes in frequently for some...

My wife has cll diagnosed in June of 2012. She is currently on Venclexta. My qu...

Ecalv

•1 year ago

38 Replies

Hello strangers.

Hello, just thought that having been banned from the Cllforum years ago for no good reason, I would catch up with what has been happening to some of the people...

Hello, just thought that having been banned from the Cllforum years ago for no g...

andysnat

•1 year ago

8 Replies

Lymph Node Resurgence

Hello Everyone! I started my treatment last December. Completed my last Gazyva in June and am still on my Venetoclax through the end of the year. Some of my...

Hello Everyone! I started my treatment last December. Completed my last Gazyva ...

filmcaptive1

•1 year ago

8 Replies

Shingrix may be available on Australia's National Immunisation Program for those with CLL from 1 November 2023

The Pharmaceutical Benefits Advisory Committee has recommended that Shingrix be included on Australia's National Immunisation Program for some Australians...

The Pharmaceutical Benefits Advisory Committee has recommended that Shingrix be ...

CLLerinOz

Administrator•1 year ago

4 Replies

Cosentyx

I have been on WW CLL for about ten years. With wbc ranging from 13 to 28. I recently started injecting Cosentyx for a bad case of psoriasis. I previously was...

I have been on WW CLL for about ten years. With wbc ranging from 13 to 28. I rec...

Hidden

•1 year ago

6 Replies

Write a post or ask a question

Posts - CLL Support | HealthUnlocked

CLL Support

Living with CLL_SLL posts

Sudden allergy to dogs

shingles

CLL and sleep issues

aspirin when withholding ibrutinib

Over reactive 1st Obin Treatment.

When We Have CLL, Why We Need Particularly need an Immunome. (Why neutrophil and immunoglobulin counts don't measure immunity all that well)

21Bedlam21

Exercise for aging people: where to begin, and how to minimize risk while maximizing potential, by Peter Attia M.D.

Fatigue

IgG Testing, Immunoglobulin Replacement Therapy, and Infection Outcomes in Patients with CLL or NHL: Real-World Evidence

Recent Chest CT scan to check for SLL progression, June 7, 2024 (part 2 of 2 posts)

Recent CT abdomen and pelvis scan to check for SLL progression, June 7, 2024 (part 1 of 2 posts)

Sepsis - a timely reminder

"Natural hack" to boost immune system

Determining if you'll never need treatment. It is feasible and safe to stop specialized follow-up of asymptomatic lower risk CLL?

Low vitamin d high serum ferritin

brukinsa cll patient

CLL survival times ARE improving, thanks to BTK and BCL-2 inhibitors

Tinnitus & CLL

Latest COVID-19 guide for immunocompromised blood cancer patients from the International COVID-19 Blood Cancer Coalition (ICBCC)

cll and associated skin disorder

New to an on line community

Shingrix availability on PBS in Australia from 1 November has been confirmed

Lymphatic drainage massages

4 weeks of Rituximab

Wearing a mask!

Hello strangers.

Lymph Node Resurgence

Shingrix may be available on Australia's National Immunisation Program for those with CLL from 1 November 2023

Cosentyx

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