Posts - CLL Support | HealthUnlocked

CLL Support

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All posts for March 2023

Is Two Weeks Off Ibrutinib Risky?

My husband has been on ibrutinib for 9 years as his first and only treatment. He takes 140 mg per day (plus diltiazem which makes the ibrutinib degrade more...

My husband has been on ibrutinib for 9 years as his first and only treatment. He...

Ibru

•2 years ago

19 Replies

For US folk, the room air sanitizer I like is 40% off

If anyone has been thinking about an air sanitizer... https://www.airoasis.com/products/ionicair-uv-purifier No financial interest. I like not having to wipe...

If anyone has been thinking about an air sanitizer... https://www.airoasis.com/...

SofiaDeo

•2 years ago

4 Replies

Venetoclax Consolidation Achieves Durable Off-Treatment Remissions in Patient with High Risk CLL Who Have Been on Ibrutinib More Than a Year

This is something that some of our USA members have discussed with their doctors and it looks like the logic is correct. "Patients (pts) receiving...

This is something that some of our USA members have discussed with their doctors...

Jm954

Administrator•2 years ago

4 Replies

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Outcomes after UMRD with 1st line Ib +Ven Fixed Duration Treatment Versus Continued Ibr Follow-up in the CAPTIVATE Study

First-line Ibr + Ven is an all-oral, once-daily, chemotherapy-free regimen that continues to provide deep, durable clinical responses in pts with CLL. With...

First-line Ibr + Ven is an all-oral, once-daily, chemotherapy-free regimen that ...

Jm954

Administrator•2 years ago

6 Replies

BTK Degrader Shows Potential for Treating Refractory CLL and SLL

A novel Bruton's tyrosine kinase (BTK) degrader, NX-2127, has shown potential for treating patients with double- and triple-refractory CLL or SLL who have...

A novel Bruton's tyrosine kinase (BTK) degrader, NX-2127, has shown potential fo...

Jm954

Administrator•2 years ago

14 Replies

Voriconazole interaction with Acalabrutinib

Hello All, Any leads on the interaction of voriconazole with Acalabrutinib ? My father had been diagnosed with Cryptococcosis fungallung infection on...

Hello All, Any leads on the interaction of voriconazole with Acalabrutinib ? M...

Hidden

•2 years ago

2 Replies

Update on Failing Calquence-Pirtobrutinib Next

I spoke with my specialist from Upenn today and she wants to switch me to pirtobrutinib once it receives FDA approval for CLL in a few weeks. My questions...

I spoke with my specialist from Upenn today and she wants to switch me to pirtob...

ReneeSusan

•2 years ago

17 Replies

Should I be worried? CT scan shows Splenomegaly since I got COVID.

OK, now I am scared! I had COVID-19 this past Dec.,I was in the hospital 5 days due to hypoxia. (post COVID) and a CT scan showed my Spleen is enlarged and...

OK, now I am scared! I had COVID-19 this past Dec.,I was in the hospital 5 day...

RandyM

•2 years ago

31 Replies

Research shows blood cancer patients generate strong T cell immunity after SARS-CoV-2 vaccination

Today, the Doherty Institute in Melbourne, Australia, released a statement about a research study that shows that blood cancer patients highly benefit from...

Today, the Doherty Institute in Melbourne, Australia, released a statement about...

CLLerinOz

Administrator•2 years ago

22 Replies

1.5 million atrial fibrillation cases may be undiagnosed in US (prevalence estimate of 11%)

An analysis of five U.S. medical claims databases suggests as many as 23% of 5.6 million to 6.6 million presumptive atrial fibrillation cases are...

An analysis of five U.S. medical claims databases suggests as many as 23% of 5.6...

AussieNeil

Administrator•2 years ago

6 Replies

I don't want to start treatment ever, however I know that I probably will at some point.

I am a 13.5yr W& W CLL Leukemia Survivor. In that time I have lost weight 340->250, gone 100% Plantbased 50% RAW (dehydrated foods to keep in the enzymes)...

I am a 13.5yr W& W CLL Leukemia Survivor. In that time I have lost weight 340->...

CoachVera55

•2 years ago

57 Replies

Treatment & Masks

During treatment did everyone wear masks whenever they went out if the house? Or just when going to an indoor area with a larger number of people. How careful...

During treatment did everyone wear masks whenever they went out if the house? Or...

Wendy328

•2 years ago

26 Replies

Unmutated patients respond better to Ibrutinib/Venetoclax compared to mutated

Really interesting early results from the FLAIR trial!...

Greenbunnies

•2 years ago

3 Replies

Need extensive dental work- any precautions for someone with CLL?

I have put dental work off long enough. I actually don’t have a choice anymore. I have extensive dental work needed. My CLL is fairly indolent, untreated...

I have put dental work off long enough. I actually don’t have a choice anymore....

Jonquiljo

•2 years ago

12 Replies

Weight Loss

Mick ,has lost over 7kg in less than a month for no apparent reason.He has spoken to the GP and has done a stool sample and having blood's done today.I have...

Mick ,has lost over 7kg in less than a month for no apparent reason.He has spoke...

very

•2 years ago

5 Replies

Vaccination under Acalabrutinib?

I read that vaccinations under a therapy with Acalabrutinib (Calquence) do not work well. How do you do it with booster vaccinations for COVID, for example?...

I read that vaccinations under a therapy with Acalabrutinib (Calquence) do not w...

Hidden

•2 years ago

28 Replies

Normal contrast CT Scan, but middle back pain sleeping

My liver and spleen is normal. Axilary and external iliac is mildly prominent. When I sleep at night I have middle back pain, around right and left rib...

My liver and spleen is normal. Axilary and external iliac is mildly prominent. ...

Kasif

•2 years ago

8 Replies

Preliminary study suggests Covid infection damages the immune system, notably T cell CD8 production

This would contribute to "why" everyone seems to be getting respiratory viruses this year. Not being exposed to standard circulating viruses, due to masking,...

This would contribute to "why" everyone seems to be getting respiratory viruses ...

SofiaDeo

•2 years ago

4 Replies

Interesting CLL date from Medscape

Probably ‘old hat’ for the likes of Neil, et al,(Jan 23) but some may find it of interest re improved responses to new therapies & drug / BTK combinations....

Probably ‘old hat’ for the likes of Neil, et al,(Jan 23) but some may find it of...

Petroc

•2 years ago

2 Replies

CLL Webinar

Hi all Here is the link for today's CLL webinar. This educational webinar will give an overview of how CLL is treated today and the significance of ’hot...

Hi all Here is the link for today's CLL webinar. This educational webinar will ...

Irishcll

•2 years ago

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Still having side effects from Calquence

I am getting numbness in my hands and feet, as well as pain, I am on one pill a day, but it is not helping. I will be going to Ohio State on April, 19 th...

I am getting numbness in my hands and feet, as well as pain, I am on one pill a...

helenolton

•2 years ago

2 Replies

Dr visit

Hi everyone been a different Dr today I am 77 on watch and wait diagonosed 2021 on leaving he said you can live twelve years with CLL so dont worry you will...

Hi everyone been a different Dr today I am 77 on watch and wait diagonosed 202...

Kiwi77

•2 years ago

16 Replies

pins and needles after IV

Hey, After my first round of treatment I suffered side effects needing a hospital stay. I received antibiotics through a drip on my left wrist, I had some...

Hey, After my first round of treatment I suffered side effects needing a hospi...

Our_wes123

•2 years ago

13 Replies

lymph node swollen in neck

Hi all, I’m on watch and wait CLL and have not had any symptoms except now I can see an enlarged lymph node in my neck. I’ve not told my oncologist but is...

Hi all, I’m on watch and wait CLL and have not had any symptoms except now I c...

Pav545

•2 years ago

20 Replies

iodine and thyroid

Beware supplements with iodine. I am a thyroid cancer survivor who had half of my thyroid removed and recently started taking a supplement that had seaweed...

Beware supplements with iodine. I am a thyroid cancer survivor who had half of ...

MWalters

•2 years ago

8 Replies

Flow Cytometry To rule out CLL

I have slightly elevated WBC for the past 2 1/2 years, from the mid 12s - 15.5. I have been very fatigued with bone pain, but to osteoporosis. My PC sent me...

I have slightly elevated WBC for the past 2 1/2 years, from the mid 12s - 15.5....

Skeetla

•2 years ago

9 Replies

V + O adverse affects

To anyone who has been treated with V +O, could you answer a few questions for me as I have just started? I am relapsed after FCR, have enlarged spleen (2-3...

To anyone who has been treated with V +O, could you answer a few questions for ...

skipro

•2 years ago

37 Replies

Diagnosed with CLL March 2022

I was diagnosed a year ago after going to the doctor for frequent infections , night sweats and feeling very fatigued . My labs came back abnormal. I went...

I was diagnosed a year ago after going to the doctor for frequent infections , n...

Jbeebe

•2 years ago

13 Replies

Effectiveness of Acalabrutinib dosage halved?

Am trying to be rational but feeling very scared. Saw haematologist last week when several red flags were raised - weight loss , raised lymphocyte count,...

Am trying to be rational but feeling very scared. Saw haematologist last week wh...

Jevotchka

•2 years ago

10 Replies

Advice Needed for Hand Tremors

My mom is 96 years old and in failing health. She was diagnosed with CLL 7 years ago and has been on Calquence for the last 4 years. She has other health...

My mom is 96 years old and in failing health. She was diagnosed with CLL 7 year...

BaseballGardener

•2 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2023

Is Two Weeks Off Ibrutinib Risky?

For US folk, the room air sanitizer I like is 40% off

Venetoclax Consolidation Achieves Durable Off-Treatment Remissions in Patient with High Risk CLL Who Have Been on Ibrutinib More Than a Year

Outcomes after UMRD with 1st line Ib +Ven Fixed Duration Treatment Versus Continued Ibr Follow-up in the CAPTIVATE Study

BTK Degrader Shows Potential for Treating Refractory CLL and SLL

Voriconazole interaction with Acalabrutinib

Update on Failing Calquence-Pirtobrutinib Next

Should I be worried? CT scan shows Splenomegaly since I got COVID.

Research shows blood cancer patients generate strong T cell immunity after SARS-CoV-2 vaccination

1.5 million atrial fibrillation cases may be undiagnosed in US (prevalence estimate of 11%)

I don't want to start treatment ever, however I know that I probably will at some point.

Treatment & Masks

Unmutated patients respond better to Ibrutinib/Venetoclax compared to mutated

Need extensive dental work- any precautions for someone with CLL?

Weight Loss

Vaccination under Acalabrutinib?

Normal contrast CT Scan, but middle back pain sleeping

Preliminary study suggests Covid infection damages the immune system, notably T cell CD8 production

Interesting CLL date from Medscape

CLL Webinar

Still having side effects from Calquence

Dr visit

pins and needles after IV

lymph node swollen in neck

iodine and thyroid

Flow Cytometry To rule out CLL

V + O adverse affects

Diagnosed with CLL March 2022

Effectiveness of Acalabrutinib dosage halved?

Advice Needed for Hand Tremors

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