Posts - CLL Support | HealthUnlocked

CLL Support

22,515 members • 38,672 posts

All posts for October 2020

Any advice on diet or supplements to aid someone with CLL? Also< heard very good things about juicing. anyone have insight, recipes welcome

I am new to this platform. My fiancé was just diagnosed this past week... he's 58 and really active, we love to travel. If anyone has insight on traveling with...

I am new to this platform. My fiancé was just diagnosed this past week... he's 5...

HappyEndings

•4 years ago

26 Replies

Diuretics and BTK Inhibitors

Wondering if anyone is on diuretics/water pill such as lasix or aldactone, while taking ibrutinib/ BTK inhibitors. Wondering how this affects hydration....

Wondering if anyone is on diuretics/water pill such as lasix or aldactone, whi...

Davidcara

•4 years ago

4 Replies

CAR-T day 28 results

Massive news for me today. I have no detectable disease - just 4 weeks post CAR-T infusion - feeling incredibly thankful....

Massive news for me today. I have no detectable disease - just 4 weeks post CAR...

Debinoz

•4 years ago

61 Replies

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Fresh vegetables and later stages of CLL

How do you prepare fresh salads (if any) for somebody with a later stage CLL ? I am washing everything I can with soap, but green leaves (spinach, kale,...

How do you prepare fresh salads (if any) for somebody with a later stage CLL ? I...

MikeOr

•4 years ago

24 Replies

A New Twist?

Greetings fellow sojourners! As previously stated, I was diagnosed with CLL in Feb. 2020, and am in a Watch & Wait status. Yesterday, I went to my GP (General...

Greetings fellow sojourners! As previously stated, I was diagnosed with CLL in F...

Jungle-Jim

•4 years ago

10 Replies

Chromosome 12

Hi, I’m new here. Just trying to gather as much info as I can on my conditions she has chromosome 12. Would also be interesting to see if I can connect with...

Hi, I’m new here. Just trying to gather as much info as I can on my conditions s...

Kittycat812

•4 years ago

1 Reply

Practicing with the Patient Voice: A Patient Decision Library: Wow! 4 patient stories/ Drs. Anthony Mato + Dr. Matt Davids comment

Practicing with the Patient Voice: A Patient Decision Library: Wow! There is only one thing more informative and helpful than hearing 4 CLL patients describe...

Practicing with the Patient Voice: A Patient Decision Library: Wow! There is onl...

bkoffman

CLL CURE Hero•4 years ago

10 Replies

Rosemary - another anti-leukemia spice!

A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic...

A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, ro...

HowardR

•4 years ago

4 Replies

What has Swiss Cheese to do with Covid19?

Yet another great article and illustrations from Siouxsie Wiles and Toby Morris NZ....

Yet another great article and illustrations from Siouxsie Wiles and Toby Morris ...

YelvertonDevon

•4 years ago

3 Replies

The "ABCDE minus L" diet for fighting CLL

As a result, of a bad blood test at the end of September, I reexamined what I was eating and doing and ended up inventing the "ABCDE minus L" diet for fighting...

As a result, of a bad blood test at the end of September, I reexamined what I wa...

HowardR

•4 years ago

61 Replies

Life after transplant

I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I...

I read a lot about people struggling after transplant to get back to normal life...

KAS8

•4 years ago

11 Replies

Richter's Syndrome

Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback...

Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. Thi...

ishudderz

•4 years ago

16 Replies

A webinar for patients - practical workshop 'Coping with Fatigue' Oct 28th at 4pm

Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar...

Hi all, this is a challenge that many of us have to manage. Please join us for ...

HAIRBEAR_UK

Founder Admin•4 years ago

9 Replies

Prevnar 13 not available should I have Pneumovax 23 instead?

I have arranged to have a Streptococcus Pneumonia injection at my GP's surgery ( in the UK), and saw on the website it was advised to first have a Prevnar 13...

I have arranged to have a Streptococcus Pneumonia injection at my GP's surgery (...

Xceed

•4 years ago

4 Replies

Results after 3 months on Venetoclax, with questions?

After suffering a major case of hemolytic anemia in July, I was put on Venetoclax and actually had stellar results for three months, until about a week ago...

After suffering a major case of hemolytic anemia in July, I was put on Venetocla...

KevinCLLITP

•4 years ago

8 Replies

I have many other conditions

Ostio arthritis everywhere, fybromailgia deuputreys white matter disease which leads to dementia sinus disease heart murmer just had back surgery

Ostio arthritis everywhere, fybromailgia deuputreys white matter disease which l...

Happydazs

•4 years ago

Be the first to reply

Ibrutinb

Is all hair lost on ibrutinib

Happydazs

•4 years ago

12 Replies

CLL Society interview with Dr. Sameer Parikh: MBL is present in 5% of the population over age 40. Most will not develop CLL

CLLSociety Dr. Brian Koffman's ASH 2019 interview with Dr. Sameer Parikh: Did you know that there is a pre-cancerous condition known as Monoclonal B-cell...

CLLSociety Dr. Brian Koffman's ASH 2019 interview with Dr. Sameer Parikh: Did yo...

bkoffman

CLL CURE Hero•4 years ago

1 Reply

Well the results are in.

So after 19 cycles on the 3 drug arm of my trial at Rutgers O+V+I. I am done with all medication. I have to be honest it ended on Sept 29th but have been so...

So after 19 cycles on the 3 drug arm of my trial at Rutgers O+V+I. I am done wi...

Coolerjoe

•4 years ago

20 Replies

Imbruvica dosage

Hello Do you know people with CLL who only take 1 capsule of Imbruvica 140 mg per day?

Hello Do you know people with CLL who only take 1 capsule of Imbruvica 140 mg pe...

Green202

•4 years ago

11 Replies

Flair trial end after 6 years.

Hi, haven’t posted in a while. My husband has been on the Flair trial taking Ibrutinib after an initial round of Rituximab. His part in the trial has now...

Hi, haven’t posted in a while. My husband has been on the Flair trial taking Ib...

annsathome

•4 years ago

11 Replies

Join us for the next free CLL Support webinar on Friday 30 October at 1.00 pm.

Our keynote speaker will be Doctor Samir Agrawal who is Senior lecturer in haematology at the Queen Mary Hospital, London and Consultant Haemo-Oncologist at St...

Our keynote speaker will be Doctor Samir Agrawal who is Senior lecturer in haema...

pkguk2

Partner•4 years ago

2 Replies

What is the advice if you have corona symptoms.

I'm not aware of any specific advice of a w+w CLL patient if I develop symptoms of corona. Only recently diagnosed I intended to follow Dr's advice of putting...

I'm not aware of any specific advice of a w+w CLL patient if I develop symptoms ...

Belfastbees

•4 years ago

6 Replies

CLL Society Spend 1 hour with us & learn more about CAR-T than you thought possible from 1 of its pioneer scientists Dr. Fraietta Nov 17!

Webinars! Webinars! Webinars! The place where CLL Society's CLL patients love to learn! 99% of our MRD webinar attendees reported they were more confident in...

Webinars! Webinars! Webinars! The place where CLL Society's CLL patients love to...

bkoffman

CLL CURE Hero•4 years ago

1 Reply

Prophylaxis While on Ibrutinib

Just one more question: Wondering if anyone is on any antiviral, antibacterial, or antifungal medication, while taking ibrutinib.

Just one more question: Wondering if anyone is on any antiviral, antibacterial, ...

Davidcara

•4 years ago

35 Replies

AVO Trial update

Hope this finds everyone well! I had CT scans and bloodwork last Tuesday for comparison before starting Venetoclax! My nodes are almost completely gone! At...

Hope this finds everyone well! I had CT scans and bloodwork last Tuesday for com...

Tton46

•4 years ago

3 Replies

Suggestions for reasonably priced temporary lodging in Houston for clinical trial

I am new to this site and currently looking for short-term reasonably priced lodging to be in a clinical trial at MD Anderson. Replies to this duplicate...

I am new to this site and currently looking for short-term reasonably priced lod...

Giraffe59

•4 years ago

5 Replies

Best temporary and reasonably priced lodging in Houston for clinical trial; approximately three months

I am new to this site and seeking lodging suggestions for temporary relocation to Houston for Clinical Trial. My CLL has transformed to Richter’s

I am new to this site and seeking lodging suggestions for temporary relocation t...

Giraffe59

•4 years ago

3 Replies

Latest Treatment for CLL

What seems to be the best treatment for CLL at this time?

ballynb

•4 years ago

12 Replies

Still new to the forum but I have started with Ibrutinibe.

First hi to all, them this post is for let you know about my jurney with IB, the ups and downs and I will use this post too see my milestones achived. So from...

First hi to all, them this post is for let you know about my jurney with IB, the...

2017cll

•4 years ago

20 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for October 2020

Any advice on diet or supplements to aid someone with CLL? Also< heard very good things about juicing. anyone have insight, recipes welcome

Diuretics and BTK Inhibitors

CAR-T day 28 results

Fresh vegetables and later stages of CLL

A New Twist?

Chromosome 12

Practicing with the Patient Voice: A Patient Decision Library: Wow! 4 patient stories/ Drs. Anthony Mato + Dr. Matt Davids comment

Rosemary - another anti-leukemia spice!

What has Swiss Cheese to do with Covid19?

The "ABCDE minus L" diet for fighting CLL

Life after transplant

Richter's Syndrome

A webinar for patients - practical workshop 'Coping with Fatigue' Oct 28th at 4pm

Prevnar 13 not available should I have Pneumovax 23 instead?

Results after 3 months on Venetoclax, with questions?

I have many other conditions

Ibrutinb

CLL Society interview with Dr. Sameer Parikh: MBL is present in 5% of the population over age 40. Most will not develop CLL

Well the results are in.

Imbruvica dosage

Flair trial end after 6 years.

Join us for the next free CLL Support webinar on Friday 30 October at 1.00 pm.

What is the advice if you have corona symptoms.

CLL Society Spend 1 hour with us & learn more about CAR-T than you thought possible from 1 of its pioneer scientists Dr. Fraietta Nov 17!

Prophylaxis While on Ibrutinib

AVO Trial update

Suggestions for reasonably priced temporary lodging in Houston for clinical trial

Best temporary and reasonably priced lodging in Houston for clinical trial; approximately three months

Latest Treatment for CLL

Still new to the forum but I have started with Ibrutinibe.

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