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CLL Support

22,532 members • 38,709 posts

All posts for August 2019

Treatment FCR with unmutated IGVH—clarify pls!

My husband is 13q del and unmutated IGVH. In Switzerland they propose FCR treatment and have said outcomes are generally the same. I have read differently. Any...

My husband is 13q del and unmutated IGVH. In Switzerland they propose FCR treatm...

gingerlovesal

•5 years ago

33 Replies

Ibrutinib update for me

Hi all For those that have followed my posts over the last year or so will know I have have had a bit of a rough time. But now i would like to tell you a...

Hi all For those that have followed my posts over the last year or so will know ...

Mick491

•5 years ago

8 Replies

Double dose of imbruvica... I’m a idiot!!!

Hi All, So stupid ... I took my 3 pills of imbruvica at my normal time this evening. With out thinking 30 min later I took it again and only realized what I...

Hi All, So stupid ... I took my 3 pills of imbruvica at my normal time this even...

AM75

•5 years ago

21 Replies

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A CANCER VACCINE….. At last visit my Doc mentioned a vaccine, but I didn’t inquire with him Further, then read this in Tampa Bay Times.

A vaccine, called ImmuneFx, makes cancer cells visible to the immune system. After successful trials on animals, it's being tested on humans. Times staff...

A vaccine, called ImmuneFx, makes cancer cells visible to the immune system. Aft...

tekusa

•5 years ago

11 Replies

Blotching of Face

I am a 70 year old male who has been on Imbruvica for 16 months. For the most part the meds have had a positive effect.... lymph nodes 50+ percent down in...

I am a 70 year old male who has been on Imbruvica for 16 months. For the most pa...

Audrey10

•5 years ago

4 Replies

Update/have to stop looking stuff up!

My husband had another Gazyva treatment today. Turns out his numbers are down, but we were told that is to be expected, the numbers should get better. He...

My husband had another Gazyva treatment today. Turns out his numbers are down, ...

AuntHelen

•5 years ago

4 Replies

Kimchi ?

I have CLL and take Imbruvica. Today I asked my hematologist if I can consume Kimchi and he said: Yes. (Kimchi contains beneficial bacteria which increasingly...

I have CLL and take Imbruvica. Today I asked my hematologist if I can consume Ki...

vog292

•5 years ago

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Scottish Medicines Consortium approves Venetoclax + Rituximab Treatment for relapsed/refractory CLL

Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in...

Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for trea...

Jm954

Administrator•5 years ago

6 Replies

CLLSA NOTTINGHAM CONFERENCE. 'CLL in 2019 and Beyond'

A date for your diary: Thursday 5th September at Nottingham Racecourse. The keynote speaker will be Dr Christopher Fox, Consultant Haematologist, Nottingham...

A date for your diary: Thursday 5th September at Nottingham Racecourse. The keyn...

pkguk2

Partner•5 years ago

2 Replies

A humorous look at CAR-T cell therapy

A New Zealand comedian, and friend of my son, who was one of the first people in NZ to have CAR-T cell therapy (he travelled to Boston for treatment) has...

A New Zealand comedian, and friend of my son, who was one of the first people in...

thb4747

•5 years ago

5 Replies

Trisomy 12

That's the name of my specific mutation. (No superpowers, darn) Anyone else have that? Anyone know what difference it makes? My hem/on said that it was...

That's the name of my specific mutation. (No superpowers, darn) Anyone else ha...

mjcll41

•5 years ago

14 Replies

The Shuttering of the Cancer Moonshot

Hi, Money, politics, ethics, and cancer research and maybe misaligned priorities: please take a look at Glenn Sabin's take on the Biden's Cancer Moonshot:...

Hi, Money, politics, ethics, and cancer research and maybe misaligned priorities...

bkoffman

CLL CURE Hero•5 years ago

1 Reply

New Jersey CLL Support Group

Meeting reminder - the next meeting of the New Jersey CLL Society support group for patients, caregivers and friends will be on Thursday, August 15th at 7...

Meeting reminder - the next meeting of the New Jersey CLL Society support group...

MikeHoff

•5 years ago

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Can't tolerate Imbruvica, what's next?

Well, my hubby didn't tolerate the Imbruvica after all. He was on the 420 dose for over a month, and the results looked very promising. But then he just got...

Well, my hubby didn't tolerate the Imbruvica after all. He was on the 420 dose ...

Snooks2008

•5 years ago

45 Replies

Hives and CLL

This is my second bout with Hives. Does anyone know if it is related to the CLL?

This is my second bout with Hives. Does anyone know if it is related to the CLL?...

DaveCll

•5 years ago

17 Replies

My CLL and CAR-T story

Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and...

Hi, Many of you may know my story but if you want to hear me tell it when I am ...

bkoffman

CLL CURE Hero•5 years ago

11 Replies

Don't give up just enjoy each day!

The_Eagle If you have CLL you need a CLL specialist. I have two and this month I am starting on Gayza only because I did FCR in 2009 and chemo pill in 2017...

The_Eagle If you have CLL you need a CLL specialist. I have two and this month...

The_Eagle

•5 years ago

13 Replies

Greetings from Chaya Venkat <chaya@clltopics.net>

Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad...

Greetings: It has been a long time and I hope this email still finds some of you...

lankisterguy

Volunteer•5 years ago

17 Replies

CLL and Statins

Here is the question, has anyone experienced a quick or sudden change in their blood counts since taking Atorvastatin? Hi All, I am reasonably new to this...

Here is the question, has anyone experienced a quick or sudden change in their b...

Richardmint

•5 years ago

5 Replies

First cycle of Fcr

After my daughter25 years sll patients had taken the first dose of FCR the glands in her neck responded and Her size reduces and then returned to inflation...

After my daughter25 years sll patients had taken the first dose of FCR the gland...

Baki74

•5 years ago

5 Replies

Long-term safety of single-agent ibrutinib in patients with chronic lymphocytic leukemia in 3 pivotal studies

I have checked but apologies if this has been posted before. Published online June 13, 2019. Key Points * In 424 patients with CLL on long-term ibrutinib, AEs...

I have checked but apologies if this has been posted before. Published online Ju...

Jm954

Administrator•5 years ago

12 Replies

Imbruvica Aches & Pains

Hello Again, I hate being a pain or sounding like a cry baby but I have been on Imbruvica for 7 weeks now and have dealt with Mouth Blisters, Aches in the...

Hello Again, I hate being a pain or sounding like a cry baby but I have been on ...

oso7672

•5 years ago

4 Replies

18 month Follow up results with Ibrutinib/Venetoclax clinical trial

I have been for 18 months in the clinical trial for fixed duration of the phase 2 study of the combination of Ibrutinib plus Venetoclax for treatment naive...

I have been for 18 months in the clinical trial for fixed duration of the phase ...

lamboman

•5 years ago

23 Replies

Anyone know a super effective drug to prevent my mouth sore dilemma ? HELP !!!

Hi I am 8 mo into I and V trial for relapsed CLLers Good news so far...nodes down to normal and blood normal except Neutrophils slightly lower but only...

Hi I am 8 mo into I and V trial for relapsed CLLers Good news so far...nodes ...

Catnap7

•5 years ago

19 Replies

I'm new to the site, just saying hello :)

Hello everyone, I found this site about a year ago but have never written anything...sorry. I think I was not ready and I just watched from the sidelines so...

Hello everyone, I found this site about a year ago but have never written anythi...

Marble50

•5 years ago

20 Replies

Comments/ replies on individual medical results

This community is the best I have ever found in terms of excellent support and information sharing. What is particularly helpful is the sharing of the...

This community is the best I have ever found in terms of excellent support and i...

Fowey2009

•5 years ago

14 Replies

The Importance of Being an Informed Patient

Hi, Not all my interviews at ASH are with doctors. Some are with fellow advocates. Here is one of two I did with Lorna Warwick, the CEO of Lymphoma Coalition....

Hi, Not all my interviews at ASH are with doctors. Some are with fellow advocate...

bkoffman

CLL CURE Hero•5 years ago

4 Replies

Ibrutinib and A1c drop

My A1c has dropped to normal since I have been on Ibrutinib. I was wondering if Cll raises Blood Sugar or the Ibrutinib lowers it. Anyone have this...

My A1c has dropped to normal since I have been on Ibrutinib. I was wondering if ...

country76

•5 years ago

8 Replies

CLL Society New York City Support Group Meeting Sunday August 18, 2019 3:00pm

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL...

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Gro...

lankisterguy

Volunteer•5 years ago

Be the first to reply

3 month Lola’s passing

Today marks 3 months my sisters gone, and although I think of her everyday on special days like today I can honestly say it doesn’t get any easier as time goes...

Today marks 3 months my sisters gone, and although I think of her everyday on sp...

TeresaVince

•5 years ago

36 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2019

Treatment FCR with unmutated IGVH—clarify pls!

Ibrutinib update for me

Double dose of imbruvica... I’m a idiot!!!

A CANCER VACCINE….. At last visit my Doc mentioned a vaccine, but I didn’t inquire with him Further, then read this in Tampa Bay Times.

Blotching of Face

Update/have to stop looking stuff up!

Kimchi ?

Scottish Medicines Consortium approves Venetoclax + Rituximab Treatment for relapsed/refractory CLL

CLLSA NOTTINGHAM CONFERENCE. 'CLL in 2019 and Beyond'

A humorous look at CAR-T cell therapy

Trisomy 12

The Shuttering of the Cancer Moonshot

New Jersey CLL Support Group

Can't tolerate Imbruvica, what's next?

Hives and CLL

My CLL and CAR-T story

Don't give up just enjoy each day!

Greetings from Chaya Venkat <chaya@clltopics.net>

CLL and Statins

First cycle of Fcr

Long-term safety of single-agent ibrutinib in patients with chronic lymphocytic leukemia in 3 pivotal studies

Imbruvica Aches & Pains

18 month Follow up results with Ibrutinib/Venetoclax clinical trial

Anyone know a super effective drug to prevent my mouth sore dilemma ? HELP !!!

I'm new to the site, just saying hello :)

Comments/ replies on individual medical results

The Importance of Being an Informed Patient

Ibrutinib and A1c drop

CLL Society New York City Support Group Meeting Sunday August 18, 2019 3:00pm

3 month Lola’s passing

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