Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for September 2020

IVIg Infusion feedback

Hi everyone, I am thinking this is probably going to seem like a mild problem, and I tend to be very overly anxious about anything new, but my Immuneglobulin g...

Hi everyone, I am thinking this is probably going to seem like a mild problem, a...

Cgolen99

•4 years ago

48 Replies

US Patient Alert - Some US insurers to move this week to stop waiving telehealth copays!

Heads up for patients with some private health insurers in US. Not clear how (or if) this will affect Medicare patients with supplemental coverage....

Heads up for patients with some private health insurers in US. Not clear how (or...

cujoe

•4 years ago

2 Replies

Infrared bad for CLL

I have CLL and am using far infrared for lower back issues and neuropathy. It has the ceramic discs. Is this a problem?

I have CLL and am using far infrared for lower back issues and neuropathy. It ha...

Warriordad

•4 years ago

4 Replies

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VenR in Relapsed CLL: 4-Year Results and Evaluation of Impact of Genomic Complexity and Gene Mutations from MURANO 3 study

This is an important evaluation and insight into how your CLL profile affects your response to VR in relapsed and refractory CLL. Sadly it looks like bad...

This is an important evaluation and insight into how your CLL profile affects yo...

Jm954

Administrator•4 years ago

7 Replies

Hi - I'm new here

Hello Everyone, It's really nice to have found this group. I was diagnosed with CLL about 2 years ago and am still on watch and wait. And I still have a lot to...

Hello Everyone, It's really nice to have found this group. I was diagnosed with ...

Moonmyst

•4 years ago

5 Replies

Fasting and Ibrutinib

Well after reading an article by Valter Longo on fasting and the effects on the immune system - I did it this past w/e. He talks about how the body goes into...

Well after reading an article by Valter Longo on fasting and the effects on the ...

steve_canada

•4 years ago

46 Replies

Flu Shot

When is the best time for us CLL'ers to take the flu shot for it to be most effective? The end of October, the beginning of November, or now?

When is the best time for us CLL'ers to take the flu shot for it to be most effe...

Bmarbler

•4 years ago

3 Replies

More Good News and Hope

During the first year after diagnosis (Christmas 2012) I had big problems with AIHA that the CLL caused. I really did not know how long I had left and spent...

During the first year after diagnosis (Christmas 2012) I had big problems with A...

Quarry

•4 years ago

6 Replies

Some good news and hope

A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick...

A very special day today. My wife Jan was diagnosed with an incurable blood can...

Irishcll

•4 years ago

26 Replies

CURE®s September 30th Educated Patient Webinar

CURE®’s EDUCATED PATIENT CLL Webinar Sept 30 CLL experts Drs. Danielle Brander & John Allan + CLL Society's San Diego Support Group leader Mark Hoffman...

CURE®’s EDUCATED PATIENT CLL Webinar Sept 30 CLL experts Drs. Danielle Brander &...

bkoffman

CLL CURE Hero•4 years ago

5 Replies

Richter's Syndrome will be covered by CLL Society at 10/10 Virtual Patient Education Forum/ Register today!

Richter's Syndrome is a critical topic, which will be covered in the CLL Society's BIG EVENT! October 10th Global Virtual Patient Education Forum. Dr. Sameer...

Richter's Syndrome is a critical topic, which will be covered in the CLL Society...

bkoffman

CLL CURE Hero•4 years ago

4 Replies

Flu Jabs UK

I see from another post that some people have flu jabs twice a year. I am due to have mine tomorrow morning and was unaware that some people do have them twice...

I see from another post that some people have flu jabs twice a year. I am due to...

FairweatherSailor

•4 years ago

9 Replies

Catching Up

Hi everyone. It has been some time since I’ve posted. I see many new names and few of the old ones. I hope all of you are hanging in. I was diagnosed with...

Hi everyone. It has been some time since I’ve posted. I see many new names and f...

migirlusa

•4 years ago

8 Replies

Day +5 Post CAR-T Infusion

Thanks for all the lovely messages - apologies if I haven’t got around to responding yet but please know I’ve read them and am grateful. I’ve been focusing...

Thanks for all the lovely messages - apologies if I haven’t got around to respon...

DebinOzinLondon

•4 years ago

19 Replies

safe sex with my spouse while taking imbruvica

not to be crass, but what, if any, adverse affects are there in having oral sex with my wife while taking imbruvica

not to be crass, but what, if any, adverse affects are there in having oral sex ...

PJWheeler

•4 years ago

1 Reply

How HIV Became a Cancer Cure (Interesting read FYK) CAR T-cells

https://foldingforum.org/viewtopic.php?f=15&t=30247

velderve

•4 years ago

10 Replies

Draft proposals for vaccine

Recently released proposal for a Covid vaccine from the Joint Committee on Vaccines and Immunisations puts shielders down in 6th place if aged under 65....

Recently released proposal for a Covid vaccine from the Joint Committee on Vacci...

Pinkdark2018

•4 years ago

7 Replies

Night Sweats

I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year,...

I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the...

CouldBworse

•4 years ago

14 Replies

Shingles Shot

Is it safe to get the shingles shot if I have CLL? If yes, which one ?

CouldBworse

•4 years ago

7 Replies

Do you have questions about the effectiveness of vaccines in CLL patients?

CLL Society: Do you have questions about how effective vaccines are in CLL patients? Don't miss Dr. Adrian Wiestner's lecture at CLL Society's October 10th...

CLL Society: Do you have questions about how effective vaccines are in CLL patie...

bkoffman

CLL CURE Hero•4 years ago

1 Reply

Best time of day to take Venetoclax

I am starting Venetoclax next week. Does anyone have advice as to when to take it? Is it preferable to take it with a morning meal, lunch, or with an evening...

I am starting Venetoclax next week. Does anyone have advice as to when to take i...

ronsolo306

•4 years ago

14 Replies

To treat or not to treat, that is the question..

I just had a 2nd opinion with an expert at Hopkins. It is his opinion that I should start treatment, albeit earlier than current criteria may suggest. 17p...

I just had a 2nd opinion with an expert at Hopkins. It is his opinion that I sh...

Mom-mom-e

•4 years ago

18 Replies

Can all submissions please be included?

I’m wondering how censored this site is? There is so much evidence that is not acknowledged; however a lot of negative comments (generally by site...

I’m wondering how censored this site is? There is so much evidence that is no...

AlwaysAware

•4 years ago

24 Replies

CLL Expert Access 2nd Opinion from CLL Society from your home at no cost -unfortunately for USA Residents only

A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! APPLY NOW! • Easy to qualify • Easy to apply online • No need to leave your...

A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! ...

lankisterguy

Volunteer•4 years ago

8 Replies

Flu’ vaccine

I am on Venetoclax 400mg for 4 weeks now and am wondering is it safe to have flu vaccine this winter?

I am on Venetoclax 400mg for 4 weeks now and am wondering is it safe to have flu...

Abc123qaz

•4 years ago

9 Replies

IB vs venetoclax

My mother has been living drug free with CLL for past 12+ years...until now. Her spleen has gotten so large that it's making her sick and losing a large amount...

My mother has been living drug free with CLL for past 12+ years...until now. Her...

Hawaii2018

•4 years ago

12 Replies

Thank you!

Thank you for so many lovely messages - you really are a lovely group of people. And, yes, I got my champagne tonight!

Thank you for so many lovely messages - you really are a lovely group of people....

Jooby59

•4 years ago

4 Replies

What to do in the early stages of CLL

Are you in the early stages of dealing with your CLL? Don't miss Dr. Neil Kay's lecture at CLL Society's October 10th Virtual Patient Education Forum. Dr. Kay...

Are you in the early stages of dealing with your CLL? Don't miss Dr. Neil Kay's ...

bkoffman

CLL CURE Hero•4 years ago

7 Replies

IVIG Infusion - Patients with no masks

I attended the chemo ward today for my IVIG infusion, the first in 5 months. I suspended this 5 months ago in line with the CLLForum's Recommendations of...

I attended the chemo ward today for my IVIG infusion, the first in 5 months. I ...

RobertCLL

•4 years ago

20 Replies

Blood in urine

blood in urine lasted 5 days and disappeared as abruptly as it started. Did anyone experienced that? I am taking acalabrutinib for three weeks but I can manage...

blood in urine lasted 5 days and disappeared as abruptly as it started. Did anyo...

Belkin123

•4 years ago

16 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2020

IVIg Infusion feedback

US Patient Alert - Some US insurers to move this week to stop waiving telehealth copays!

Infrared bad for CLL

VenR in Relapsed CLL: 4-Year Results and Evaluation of Impact of Genomic Complexity and Gene Mutations from MURANO 3 study

Hi - I'm new here

Fasting and Ibrutinib

Flu Shot

More Good News and Hope

Some good news and hope

CURE®s September 30th Educated Patient Webinar

Richter's Syndrome will be covered by CLL Society at 10/10 Virtual Patient Education Forum/ Register today!

Flu Jabs UK

Catching Up

Day +5 Post CAR-T Infusion

safe sex with my spouse while taking imbruvica

How HIV Became a Cancer Cure (Interesting read FYK) CAR T-cells

Draft proposals for vaccine

Night Sweats

Shingles Shot

Do you have questions about the effectiveness of vaccines in CLL patients?

Best time of day to take Venetoclax

To treat or not to treat, that is the question..

Can all submissions please be included?

CLL Expert Access 2nd Opinion from CLL Society from your home at no cost -unfortunately for USA Residents only

Flu’ vaccine

IB vs venetoclax

Thank you!

What to do in the early stages of CLL

IVIG Infusion - Patients with no masks

Blood in urine

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