CLL Support | HealthUnlocked

CLL Support

22,477 members • 38,616 posts

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CLL questions

Are you living a normal life? Are you happy? Do you live in fear of what will be the next deadly disease?

Are you living a normal life? Are you happy? Do you live in fear of what will be...

Crablegs

•3 days ago

62 Replies

Joy in response to frustrating news

I had a bone marrow biopsy to see if I was at uMRD and could come off my second CLL treatment in 5 years. The tests were sent to the wrong location and after...

I had a bone marrow biopsy to see if I was at uMRD and could come off my second ...

skipro

•5 days ago

42 Replies

Almost to the point of despair. Sorry for this.

Hello, everyone. Today's post is more in the form of despair because, frankly, that's how I feel. I'm only a few days away from starting the Obinutuzumab...

Hello, everyone. Today's post is more in the form of despair because, frankly, t...

BMFCDRW

•15 days ago

56 Replies

Enlarged spleen CLL stage 0

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges now. My spleen has become very enlarged over the last 6 months so my...

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges ...

Redkatt

•8 days ago

40 Replies

shingles

I havnt posted for ages mainly because I’m generally very fit and well and do vast amounts of excercise but hoping for some possible explanations. Diagnosed...

I havnt posted for ages mainly because I’m generally very fit and well and do va...

Coffeejenny

•5 days ago

24 Replies

21Bedlam21

Just had a text message from my Dr not my haematologist. Just had a chest x ray done. You have blunting round the edges of your lung fields. Is this anything...

Just had a text message from my Dr not my haematologist. Just had a chest x ray ...

21Bedlam21

•3 days ago

17 Replies

bone joint and muscle pain

I’ve been reading the posts in another series and wanted to break this out. I’ve had a lot of muscle joint and bone pain including my back pelvis and legs as...

I’ve been reading the posts in another series and wanted to break this out. I’...

skipro

•28 days ago

52 Replies

CLL treatment

Hi, CLL watch and wait since 2020. My doctor(s) have recommended I start treatment. I’ve been given 2 options. First, Ventaclax and Gazyva. Treatment lasts...

Hi, CLL watch and wait since 2020. My doctor(s) have recommended I start trea...

Nana1961

•2 days ago

14 Replies

Curcumin phytosome vs. standard curcumin

I have been at the "watch and worry" stage of CLL since 2019 and have been taking curcumin twice a day because it has been found to be effective against CLL in...

I have been at the "watch and worry" stage of CLL since 2019 and have been takin...

HowardR

•4 days ago

17 Replies

SKin papuals, spots

As many of you may know I have had issues for last 16 months with skin papuals, spots. Initially they suspected my COVID booster and dx as vasculitis. But now...

As many of you may know I have had issues for last 16 months with skin papuals, ...

cartwheels

•21 hours ago

8 Replies

Starting to take acalabrutinib

My husband has relapsed after 9 years in remission ,his doctor is talking about starting him on acalabrutinib ,but he is worried about the side effects he...

My husband has relapsed after 9 years in remission ,his doctor is talking abo...

Takingchances

•10 days ago

27 Replies

Hello

Hi All, Just a brief intro, my husband was diagnosed with CLL/SLL June 2023, age 66, huge shock to say the least. His lymphocyte count doubled very...

Hi All, Just a brief intro, my husband was diagnosed with CLL/SLL June 20...

Spinlover

•7 days ago

22 Replies

COVID, Pneumonia and healthcare

Dear Community, I wanted to update you on my recent experience with COVID-19, pneumonia, and healthcare. I tested positive for COVID 20 days ago and remain...

Dear Community, I wanted to update you on my recent experience with COVID-19,...

shazie

•1 month ago

47 Replies

Too Much Testing??

There has been numerous posts on Health Unlocked this week from younger, newly diagnosed CLL patients. There seems to be two type of people asking questions....

There has been numerous posts on Health Unlocked this week from younger, newly d...

EastBayDad

•17 days ago

33 Replies

It wont be long

Hi All I have seen my Consultant today and she said it is time to start thinking about treatment. Not what I wanted to hear but after 14 years W&W I guessed...

Hi All I have seen my Consultant today and she said it is time to start thinkin...

TheFlyer

•5 days ago

17 Replies

Richter’s Anxiety

Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am in my early 50s and am Trisomy 12 unmutated and recently diagnosed. Both of us...

Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am i...

EastBayDad

•29 days ago

40 Replies

My constant source of strength, peace and everything good

This was last Fall, but I ran across it the other day and wanted to share. I stand truly amazed at God and His beautiful creations. Today, I am most...

This was last Fall, but I ran across it the other day and wanted to share. I ...

skipro

•19 days ago

32 Replies

More Promising BCL-2's and a Trial opportunity

Fresh off the press from cllsociety.org, an insight about a new study with a BCL-2 drug called sonrotoclax in combination with zanubrutinib....

Fresh off the press from cllsociety.org, an insight about a new study with a BCL...

Smakwater

•11 days ago

22 Replies

Does reducing blood sugar help?

I am wondering what happens if cll patients just eat foods that cut out sugar spikes? Does that help? I see lots of studies showing that fasting is generally...

I am wondering what happens if cll patients just eat foods that cut out sugar sp...

Research123

•22 days ago

31 Replies

Increased side effects after 6-9 months on Venetoclax

Hi all. I'm happy with the positive results of the Gazyva/Venetoclax treatment I started last spring. I am less happy with the increase in the severity of...

Hi all. I'm happy with the positive results of the Gazyva/Venetoclax treatment ...

DMary

•1 month ago

35 Replies

Does having CLL really make you 3 times more likely to get (another) cancer, and does CLL treatment add to the risk? - Part 1

1. The risk of developing a Secondary Primary Malignancy "The higher risk of SPM associated with CLL has been recognized for many years, well prior...

1. The risk of developing a Secondary Primary Malignancy "The higher risk of SP...

bennevisplace

•1 month ago

35 Replies

colonoscopy and endoscopy concerns

I am scheduled to have a colonoscopy and endoscopy in 1 week. My last colonoscopy was 8 years ago and the two colonoscopies before that found nothing but...

I am scheduled to have a colonoscopy and endoscopy in 1 week. My last colonosco...

Claybuster

•2 days ago

9 Replies

Tick bite!!

Hope someone can advise. I'm in Northern France on holiday and had an evening walk long trousers on but felt my knee go really hot. Rolled my trousers up and...

Hope someone can advise. I'm in Northern France on holiday and had an evening wa...

Jetliz

•5 days ago

13 Replies

retinal bleed and Covid vaccination

good morning to all of you amazing members. I’m debating on getting my ninth Covid booster. Last fall I had a retinal bleed that occurred during a three...

good morning to all of you amazing members. I’m debating on getting my ninth C...

skipro

•12 hours ago

4 Replies

Ivermectin may help with cancer treatments

Studies of various chronic myeloid leukemia cell lines show that ivermectin kills these lines by inducing mitochondrial dysfunction and the production of free...

Studies of various chronic myeloid leukemia cell lines show that ivermectin kill...

craterlake

•7 days ago

15 Replies

Is this normal?

We are in the UK. My Husband was diagnosed in 2019. Is prescribed Ibrutinib at the moment. He goes for FBC every 28 days but during recent appointments he...

We are in the UK. My Husband was diagnosed in 2019. Is prescribed Ibrutinib a...

popys

•1 month ago

32 Replies

aches and pains when I exercise.

In the last year I have noticed I hurt and get stabbing pains in my ankle and lower back and hip after any form of exercise. Makes it difficult to keep in...

In the last year I have noticed I hurt and get stabbing pains in my ankle and lo...

BlueIvyDog

•4 days ago

11 Replies

calquence

I’m 76 years old and was recently diagnosed with SLL. My doctor put me on Calquence. I take only 1 a day because 2 was giving me headaches. So far I’m doing...

I’m 76 years old and was recently diagnosed with SLL. My doctor put me on Calque...

Bobby9toes

•1 month ago

31 Replies

Watch & Wait - now enlarged spleen

Hello from B.C.! I was formally diagnosed in January 2024 with CLL and put on a watch and wait. I was informed it was stage 0. My next appointment is in 3...

Hello from B.C.! I was formally diagnosed in January 2024 with CLL and put on a...

BC-CLLguy

•15 days ago

19 Replies

Background

I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to...

I appreciate the interest in knowing more of my "back story" and my CLL "markers...

leftysfsl1945

•27 days ago

25 Replies

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