Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for November 2018

Swollen lower tonsils/loss of upper vocal register

Hey all, CLL since early 2015, mostly W&W: About 6 weeks ago I had a sudden change in my voice - I lost the upper 3rd of my vocal register all at once. At the...

Hey all, CLL since early 2015, mostly W&W: About 6 weeks ago I had a sudden chan...

jawdfs

•6 years ago

6 Replies

fairly young (50) and just diagnosed

Hello all, I was diagnosed a year ago and coming up for air! I am trying to get used to the new normal. I am comforted by the fact that there seems to be many...

Hello all, I was diagnosed a year ago and coming up for air! I am trying to get ...

Newchallnge

•6 years ago

22 Replies

NCRI - The UK Top living with and beyond cancer research priorities

By 2030 four million people in the UK will be living with the long-term consequences of cancer, but currently there is very little research on the problems...

By 2030 four million people in the UK will be living with the long-term conseque...

Myrddin

•6 years ago

1 Reply

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Start Up Support Groups - CLL Society

CLL Society has just sent their CLL Alert/Newsletter where they are looking for interest in starting monthly support groups. They say... “If you are looking...

CLL Society has just sent their CLL Alert/Newsletter where they are looking for ...

Anastasia1

•6 years ago

9 Replies

Alcohol with Ibrutinib

Does anyone knows if alcohol interferes with the Ibrutinib treatment? I was told not to eat oranges but not a word about the "good stuff"

Does anyone knows if alcohol interferes with the Ibrutinib treatment? I was told...

Durachok

•6 years ago

12 Replies

Flu and pneumonia vaccines

If my Ig numbers are in the toilet and my WB cells are aberrant, what sense does it make to take vaccinations that rely on my immune system to create...

If my Ig numbers are in the toilet and my WB cells are aberrant, what sense does...

debralynn

•6 years ago

10 Replies

What does this mean

Just saw this lab result...what does it mean

Nick2121

•6 years ago

13 Replies

Cll specialists

I hear often the term of CLL specialist. I have to ask if such title exists, Md I have to ask, how does a hematologist become a “CLL Specialist”? I’ve lived...

I hear often the term of CLL specialist. I have to ask if such title exists, Md ...

EJM52545

•6 years ago

10 Replies

Unmutated been WW 10 years

A good-ish story: I have unmutated CLL, diagnosed 10 years ago when I was 52. I upturned my life about five years in, turned to macrobiotics, meditation, less...

A good-ish story: I have unmutated CLL, diagnosed 10 years ago when I was 52. I...

debralynn

•6 years ago

26 Replies

Rebounding

Hey All, Anyone have any experience with Rebounding? I've read that it's one of the few exercises that can, scientifically-speaking, help drain lymph nodes....

Hey All, Anyone have any experience with Rebounding? I've read that it's one of ...

jawdfs

•6 years ago

11 Replies

Fatigue

My husband sleeps off and on all day in his chair he has recently been diagnosed withCLL and despite enlarged lymph nodes and slightly swollen spleen...

My husband sleeps off and on all day in his chair he has recently been diagnosed...

Roverbash

•6 years ago

5 Replies

Ibrutinib for a year... then obinutuzumab improves MRD- response rates

Ibrutinib and Obinutuzumab in CLL: Improved MRD Response Rates with Substantially Enhanced MRD Depletion for Patients with >1 Year Prior Ibrutinib Exposure...

Ibrutinib and Obinutuzumab in CLL: Improved MRD Response Rates with Substantiall...

avzuclav

•6 years ago

4 Replies

WCC COUNT 11.5

Hi i just wanna know if 11.5 white cell count is still normal? I am 20 years old and a female

Hi i just wanna know if 11.5 white cell count is still normal? I am 20 years old...

Ninicsz

•6 years ago

1 Reply

CLL and Crohn's

I am 8 years into CLL and 40 to 60 Years into Crohn's Disease. I have been on Imbruvica for 3 Years and currently take 280 mg per day due to severe bleeding...

I am 8 years into CLL and 40 to 60 Years into Crohn's Disease. I have been on Im...

GumboKing

•6 years ago

10 Replies

First four weeks on Imbruvica

First month on Imbruvica how high can should I expect WBC count go up? Mine went up quite a bit and I’m worried

First month on Imbruvica how high can should I expect WBC count go up? Mine went...

kwarehime

•6 years ago

22 Replies

PET CT

Is it necessary to have fresh PET CT scan before start of your treatment? I have done the scan in Feb this year. My doctor wants to start treatment as my neck...

Is it necessary to have fresh PET CT scan before start of your treatment? I have...

Supratim

•6 years ago

5 Replies

New Member Question about CLL and baby vaccination

Hello all, Just joined Health Unlocked via CLL Support Association. Have been getting great information from reading this blog for some months after my wife...

Hello all, Just joined Health Unlocked via CLL Support Association. Have been g...

PH600

•6 years ago

9 Replies

Acupuncture/ integrated medicine CLL

My dear sister was diagnosed with CLL nearly 2 years ago and is on watch and wait currently with a WBC of 28. She generally feels fine but complains about...

My dear sister was diagnosed with CLL nearly 2 years ago and is on watch and wai...

Efig

•6 years ago

6 Replies

Ibrutinnib cost in 2019

Does any body out there know how much Ibrutinnib will cost next year. I have medicare with part D Thanks for your response.

Does any body out there know how much Ibrutinnib will cost next year. I have med...

Photoguy1

•6 years ago

7 Replies

CLL Society New York City Patient Support Group : November 18th - Dr. Brian Koffman, founder of the CLL Society Joins Us

https://cllsociety.org/venue/patient-resource-center-library/ A reminder that our next meeting is Sunday, November 18th, 3pm-5pm, at 1305 York Avenue, 2nd...

https://cllsociety.org/venue/patient-resource-center-library/ A reminder that ou...

lankisterguy

Volunteer•6 years ago

1 Reply

Question

Is your wbc going up 3.2 in 1 1/2 months good numbers? I figured I would ask here and get a quicker response

Is your wbc going up 3.2 in 1 1/2 months good numbers? I figured I would ask he...

Nanatoo4

•6 years ago

7 Replies

U-MRD6 is the new MRD-

U-MRD6 = Undetectable-Minimal Residual Disease (U-MRD6) (10-6 sensitivity) Discussion The majority of pts with BM U-MRD4 after first-line FCR were MRD6+ and...

U-MRD6 = Undetectable-Minimal Residual Disease (U-MRD6) (10-6 sensitivity) Disc...

avzuclav

•6 years ago

4 Replies

Fcr update

I thought I would let you all know how my fcr is going hopefully to give those that are soon to be starting treatment some encouragement . I am currently at my...

I thought I would let you all know how my fcr is going hopefully to give those t...

dandelup

•6 years ago

9 Replies

To tell or not to tell ...

Hi Serra I am so sorry for you , I understand the feeling of not wanting to share this with your husband. I had the same feeling, when I first heard I had...

Hi Serra I am so sorry for you , I understand the feeling of not wanting to s...

kubie

•6 years ago

1 Reply

Swollen nodes right side of body GOLF BALL SIZE

I'm 23, female. I've always had issues with my lymph nodes. My armpit, groin, and leg nodes seem swollen and uncomfortable. But my neck is where it's bad....

I'm 23, female. I've always had issues with my lymph nodes. My armpit, groin, an...

Catladi3

•6 years ago

8 Replies

I am new, not started any treatment yet.

Crystalsky, this question is for you. Where did you purchase the apricot seed, Liposomal Vitamin C, and B17 capsules from?? I don't want to get them from...

Crystalsky, this question is for you. Where did you purchase the apricot seed, L...

Lasy

•6 years ago

6 Replies

A Phase II Study of Curcumin and Vitamin D in Previously Untreated Patients with Early Stage Chronic Lymphocytic Leukemia (CLL) or Small Lym

Background: Current therapies for CLL/SLL have frequent toxicities, are non-curative, and several trials have demonstrated that early treatment of the disease...

Background: Current therapies for CLL/SLL have frequent toxicities, are non-cura...

Cllcanada

Eczema

Hello ... here i’m again. Yestesday i went to the emergency because of my “eczemas “ ... the dermotologist said that it may be a Octagam reaction... gave me...

Hello ... here i’m again. Yestesday i went to the emergency because of my “eczem...

Deta1961

•6 years ago

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Hot flashes vs b symptom

I am wondering how easy it is for a postmenopausal female to distinguish between hot flashes/night sweats and CLL b symptom night sweats? I had surgical...

I am wondering how easy it is for a postmenopausal female to distinguish between...

CLLmoxie

•6 years ago

3 Replies

Good news 6 months post CART and an interview with my lead CART doctor in Seattle

Hi, I was filming interviews at ERIC 2018 in Barcelona when I got a call from Seattle with the good news on the persistence of my CART by PCR at 6 months out...

Hi, I was filming interviews at ERIC 2018 in Barcelona when I got a call from Se...

bkoffman

CLL CURE Hero•6 years ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for November 2018

Swollen lower tonsils/loss of upper vocal register

fairly young (50) and just diagnosed

NCRI - The UK Top living with and beyond cancer research priorities

Start Up Support Groups - CLL Society

Alcohol with Ibrutinib

Flu and pneumonia vaccines

What does this mean

Cll specialists

Unmutated been WW 10 years

Rebounding

Fatigue

Ibrutinib for a year... then obinutuzumab improves MRD- response rates

WCC COUNT 11.5

CLL and Crohn's

First four weeks on Imbruvica

PET CT

New Member Question about CLL and baby vaccination

Acupuncture/ integrated medicine CLL

Ibrutinnib cost in 2019

CLL Society New York City Patient Support Group : November 18th - Dr. Brian Koffman, founder of the CLL Society Joins Us

Question

U-MRD6 is the new MRD-

Fcr update

To tell or not to tell ...

Swollen nodes right side of body GOLF BALL SIZE

I am new, not started any treatment yet.

A Phase II Study of Curcumin and Vitamin D in Previously Untreated Patients with Early Stage Chronic Lymphocytic Leukemia (CLL) or Small Lym

Eczema

Hot flashes vs b symptom

Good news 6 months post CART and an interview with my lead CART doctor in Seattle

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