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CLL Support

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All posts for March 2024

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

•2 months ago

52 Replies

Temporary stoppage of Ibrutinib

I need to stop IB one week pre/post surgery. Today is day 3. Has anyone started feeling reversal symptoms? I’m feeling more fatigued. Hoping my lymph nodes...

I need to stop IB one week pre/post surgery. Today is day 3. Has anyone started ...

CoBubby

•2 months ago

3 Replies

Majic trial arm "A"

For the Majic trail, arm "A", I would like to know if anyone has completed the first 15 cycles of Acalabrutinib and Venetoclax. Has your bone marrow testing...

For the Majic trail, arm "A", I would like to know if anyone has completed the f...

JDG45

•2 months ago

12 Replies

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Lefty

I earned a degree in Electrical Engineering from the University of California, Berkeley. Worked in Silicon Valley for several years and managed to join a...

I earned a degree in Electrical Engineering from the University of California, B...

leftysfsl1945

•2 months ago

17 Replies

Cramp

My 84 year old husband has had CLL W/W now for a few years and apart from the continual dripping nose and colourless phlegmy seemingly constant production has...

My 84 year old husband has had CLL W/W now for a few years and apart from the co...

opal11uk

•2 months ago

6 Replies

Poikilocytosis

Does anyone know what if any implications Poikilocytosis has on CLL?

ZimmC

•2 months ago

6 Replies

Is it my time

Hi All In Jan I hap a knee op torn Tendon and still recovering. Had some Bloods done on 1st March and I had a lot of Abnormal results , Lymphocyte count went...

Hi All In Jan I hap a knee op torn Tendon and still recovering. Had some Blood...

TheFlyer

•2 months ago

8 Replies

Anyone on Zanubrutinib experience back and leg pain?

I started Zanubrutinib at the end of July in 2023. For the last few months, I have experienced low back pain and pain in my upper thighs. This is much worse at...

I started Zanubrutinib at the end of July in 2023. For the last few months, I ha...

motorcycle1

•2 months ago

14 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...

Hidden

•2 months ago

40 Replies

first line treatment with bendamustin and rithoximab

I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc...

I had 6 month first line treatment with bendamustin and rithoximab in 2022 sept...

09123836306

•2 months ago

3 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

•2 months ago

35 Replies

Is it Safe to take regular oranges and coffee while on Ibrutinib?

Greetings. Pls I will like to know if it is safe to take oranges ( not Seville) while on Ibrutinib? How safe is coffee intake also?Regards Oldscores 1

Greetings. Pls I will like to know if it is safe to take oranges ( not Seville) ...

Oldscores1

•2 months ago

4 Replies

https://www.patientpower.info/chronic-lymphocytic-leukemia/first-ever-car-t-therapy-approved-for-cll-sll

Promising, but unless I have read it wrong only 20% with complete response. What would be interesting is to know how many responded and for what duration

Promising, but unless I have read it wrong only 20% with complete response. Wha...

cartwheels

•2 months ago

2 Replies

WEIGHT LOSS

I have been on ibrutinib 280 mg for almost 2 years. I only weigh 107 lbs. I have lost about 10 lbs since I started taking the drug. I eat a lot but cannot...

I have been on ibrutinib 280 mg for almost 2 years. I only weigh 107 lbs. I ha...

Glasstop

•2 months ago

4 Replies

Still on hold for stem cell transplant

David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells...

David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several...

dwolden

•2 months ago

10 Replies

Poole Conference 14 March 2024

Theme Navigating Treatment Pathways beyond Chemotherapy. I am on watch and wait and fairly new to this site. I attended the conference to get a better...

Theme Navigating Treatment Pathways beyond Chemotherapy. I am on watch and wai...

21Bedlam21

•2 months ago

13 Replies

Achng joints and muscles

Hi all hope today finds you well. Recently posted that my cll is back after 4 yrs but on watch and wait as it was found accidentally as I was having a pet scan...

Hi all hope today finds you well. Recently posted that my cll is back after 4 yr...

Daisy1993

•2 months ago

22 Replies

CAR T was just approved for Relapsed/Refractory CLL/SLL ( Potentially 20% CURE rate)

What are your thoughts/suggestions/comments? Thank you, Pat...

bagelstreet225

•2 months ago

18 Replies

TP53 Testing

Good afternoon. My oncologist called me last month to tell me that my FISH test indicated that I had Trisomy 12. He went on to say “You should feel lucky that...

Good afternoon. My oncologist called me last month to tell me that my FISH test ...

Hidden

•2 months ago

14 Replies

high blood pressure

Hi, everyone, I am having high blood pressure readings each night, pretty normal during the day. I am on Ibrutinib and was wondering if anyone else has this...

Hi, everyone, I am having high blood pressure readings each night, pretty norma...

Tomich1949

•2 months ago

14 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

•2 months ago

37 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

•2 months ago

32 Replies

Newly diagnosed

Hi my name is Suzanne, and I was diagnosed with CLL in October 2023. I'm at the moment on what is called watch and wait, although I have had my first visit to...

Hi my name is Suzanne, and I was diagnosed with CLL in October 2023. I'm at the ...

stitcher66

•2 months ago

28 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

•2 months ago

35 Replies

after 3 years + of Calquence getting bad side effects

My husband had been taking Calquence for 3 + years and has been working well. The labs are normal. But the Dr did not want him to stop. But a few months he is...

My husband had been taking Calquence for 3 + years and has been working well. Th...

Chillo

•2 months ago

8 Replies

Why did we lose trust during the pandemic?

Why did we lose trust during the pandemic? My conversation with Kelley Krohnert KATELYN JETELINA MAR 14, 2024 “Your Local Epidemiologist (YLE)”...

Why did we lose trust during the pandemic? My conversation with Kelley Krohnert...

lankisterguy

Volunteer•2 months ago

10 Replies

Out of the blue fast falling platelets. CLL and ITP since long. By pass surgery of heart one year ago.

Troublesome ITP since 9 years. Past 6 months platelets has finally been stable, treated with Revolade (Eltrombopag) 25 mg and low dose Prednisolone. In...

Troublesome ITP since 9 years. Past 6 months platelets has finally been stable, ...

Accordion

•2 months ago

2 Replies

New Drug!!

Anyone else see this article this morning? This seems like great news. Right? My understanding is that this is super charged Venetoclax....

Anyone else see this article this morning? This seems like great news. Right? My...

Hidden

•2 months ago

21 Replies

Covid vaccines cut risk of virus-related heart failure and blood clots, study finds

Covid vaccines cut risk of virus-related heart failure and blood clots, study finds...

Covid vaccines cut risk of virus-related heart failure and blood clots, study fi...

lankisterguy

Volunteer•2 months ago

4 Replies

Skin cancer

I am now in my mid-sixties and was diagnosed with CLL four years; I remain on watch and wait. At around the same time I started getting multiple lesions on my...

I am now in my mid-sixties and was diagnosed with CLL four years; I remain on wa...

golfer89

•2 months ago

23 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2024

bone joint and muscle pain

Temporary stoppage of Ibrutinib

Majic trial arm "A"

Lefty

Cramp

Poikilocytosis

Is it my time

Anyone on Zanubrutinib experience back and leg pain?

Richter’s Anxiety

first line treatment with bendamustin and rithoximab

Increased side effects after 6-9 months on Venetoclax

Is it Safe to take regular oranges and coffee while on Ibrutinib?

https://www.patientpower.info/chronic-lymphocytic-leukemia/first-ever-car-t-therapy-approved-for-cll-sll

WEIGHT LOSS

Still on hold for stem cell transplant

Poole Conference 14 March 2024

Achng joints and muscles

CAR T was just approved for Relapsed/Refractory CLL/SLL ( Potentially 20% CURE rate)

TP53 Testing

high blood pressure

calquence

Is this normal?

Newly diagnosed

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

after 3 years + of Calquence getting bad side effects

Why did we lose trust during the pandemic?

Out of the blue fast falling platelets. CLL and ITP since long. By pass surgery of heart one year ago.

New Drug!!

Covid vaccines cut risk of virus-related heart failure and blood clots, study finds

Skin cancer

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