Posts - CLL Support | HealthUnlocked

CLL Support

23,253 members•39,949 posts

All posts for April 2019

I just watched Nada’s Inspiring video and I wondered what medication she was given that led to her good health. I was diagnosed in Nov 2018

Naturesong

Rivergoddess

•6 years ago

2 Replies

Has anyone been on the combination therapy of Venetoclax, Ibrutinib and Obinutuzumab?

I was wondering if I could hear from someone who has had the combination of Venetoclax, Ibrutinib and Obinutuzumab (Gazyva). My CLL is completely resistant to...

I was wondering if I could hear from someone who has had the combination of Vene...

Time17

•6 years ago

25 Replies

Looking for a resource re treatment for CLL/SLL

I've tried to search the pinned posts and did a general search but to no avail. I'm wondering if there is a resource table/rubric that exists that outlines...

I've tried to search the pinned posts and did a general search but to no avail. ...

Jemorgen

•6 years ago

23 Replies

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Increase Red Blood Cells?

Diagnosed 7 months ago. Age 65, still working, fully functioning. I understand my condition is a combination of increase in white blood cells and decrease in...

Diagnosed 7 months ago. Age 65, still working, fully functioning. I understand m...

Bigarch

•6 years ago

10 Replies

night sweats

LFCB

•6 years ago

21 Replies

Thank God for great doctors & MD Anderson

My sweet wife just had her checkup here in Houston after being on Ibrutinib and Venetoclax for 12 months. SHE IS CANCER FREE! They will keep her on the...

My sweet wife just had her checkup here in Houston after being on Ibrutinib and ...

Momdds

•6 years ago

19 Replies

what does p53 abnormal 50 percent mean

does it mean 50 percent missing? i have p17 deleted but p53 says abnormal 50 percent. does that mean mutated or missing I had fish,flow, and...

does it mean 50 percent missing? i have p17 deleted but p53 says abnormal 50 p...

Hidden

•6 years ago

16 Replies

Starting Portland, Oregon CLL Support Group soon!

After a local recent symposium that included the wonderful Dr. Brian Koffman, I have been recruited along with my co-facilitator Haleh to head to UC Irvine in...

After a local recent symposium that included the wonderful Dr. Brian Koffman, I ...

ChrisLovesLife

•6 years ago

10 Replies

CLL Rituximab - first Rituxan Hycela Shot went well!

Since I was the first woman to have the shot at OHSU yesterday that replaced my routine Rituxan infusion, I thought I would share. I had pre-treatment fear for...

Since I was the first woman to have the shot at OHSU yesterday that replaced my ...

ChrisLovesLife

•6 years ago

10 Replies

Hydration and Venetoclax

After completing the ramp up to 400mg and hydrating with 56-64 oz per day, did you continue with that kdvel of hydration every day!

After completing the ramp up to 400mg and hydrating with 56-64 oz per day, did y...

KLWC

•6 years ago

10 Replies

Grastofil shots

Had my first of three Grastofil shots yesterday and curious if anyone else has had the severe low back pain I am experiencing on it. I’m taking Tylenol to...

Had my first of three Grastofil shots yesterday and curious if anyone else has h...

Estate1

•6 years ago

10 Replies

Cll and my mutation

I switched doctors after 8 years of recurring cll....imbruvica zydelig rhituxin with all plus others...just wasn’t working (for me). My new doctor was...

I switched doctors after 8 years of recurring cll....imbruvica zydelig rhituxin ...

chemosuxs

•6 years ago

5 Replies

New Jersey CLL Support Group

Please join us for our next meeting on Thursday April 18th at 7 pm.

MikeHoff

•6 years ago

Be the first to reply

New to this site. Introduction

I was diagnosed with CLL 6 years ago. I am watching and waiting. I just found this forum last week and started really looking at things today. I was diagnosed...

I was diagnosed with CLL 6 years ago. I am watching and waiting. I just found th...

Tdcpride

•6 years ago

5 Replies

How many of us develop large b cell lymphomas

Just curious been on ibrutinib 2 years now and my bloods are perfect etc , but I still have a swollen belly which although my belly button has gone back in now...

Just curious been on ibrutinib 2 years now and my bloods are perfect etc , but I...

cartwheels

•6 years ago

21 Replies

Update

Hello everyone an update on my husband's cll went hemotology yesterday and his white cell count has gone up from 84 thousand to 85 i know it's more complicated...

Hello everyone an update on my husband's cll went hemotology yesterday and his w...

Nikkij81

•6 years ago

2 Replies

New York City -- CLL Patient Support Group April 14, 2019 Sunday 3 pm – 5 pm 1305 York Ave, New York, NY (Manhattan)

New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please...

New York City -- CLL Patient Support Group The CLL Society invites you to our su...

lankisterguy

Volunteer•6 years ago

Be the first to reply

Worried about financial ruin...

New here - freshly diagnosed, glad to find this resource. My only real concern (more like terror, actually) is financial. I'll get to that in a moment... So,...

New here - freshly diagnosed, glad to find this resource. My only real concern ...

TampaSteve

•6 years ago

35 Replies

Fingers Crossed

Saw my Hema/Onc today and she says if my CT scan shows my lymphs have reduced she will discontinue my BR sessions. (3 left). I’m not tolerating the treatments...

Saw my Hema/Onc today and she says if my CT scan shows my lymphs have reduced sh...

Estate1

•6 years ago

12 Replies

Any issues with imbruvica and CBD Oil?

If anyone taking Imbrutinib/Imbruvica is also using CBD Oil please let us know if you have had any side affects. Thanks, Joe

If anyone taking Imbrutinib/Imbruvica is also using CBD Oil please let us know i...

jejjr

•6 years ago

24 Replies

Feel pin pricks

For past few weeks I feel pain pricks in both palms. Feeling is spreading to rest of body. My GP says it could be due to low BP. ( 110/66). Does anyone else...

For past few weeks I feel pain pricks in both palms. Feeling is spreading to res...

vinnet

•6 years ago

9 Replies

Test for Patients' Treatment Response to Chronic Lymphocytic Leukemia Cut to 1 Day

The first test to quickly and accurately predict how people will respond to standard treatment for the most common type of leukemia has been developed at...

The first test to quickly and accurately predict how people will respond to stan...

wmay13241

•6 years ago

4 Replies

What did my doctor just say? “Medicalese” translations

What did my doctor just say? “Medicalese” translations https://www.mlanet.org/page/what-did-my-doctor-say Posted by Kathleen Hoffman on Mar 30, 2019 ©...

What did my doctor just say? “Medicalese” translations https://www.mlanet.org...

lankisterguy

Volunteer•6 years ago

5 Replies

Taken Off In. Due to Afib

Had medical event on airplane due to irregular heart beat. In hospital in Iceland & diag. With afib. Call to US to my oncl./hemo MD resulted in total removal...

Had medical event on airplane due to irregular heart beat. In hospital in Icelan...

cll2013

•6 years ago

2 Replies

Swelling in neck

Hi guys just a quick question. I've had a really bad cold and cough for a week and for the last 2 days my gland is swollen and so tender on left side of neck....

Hi guys just a quick question. I've had a really bad cold and cough for a week a...

welshlady52

•6 years ago

2 Replies

Neck nodes swelling

Started ibrutnib 8 days ago and have noticed swelling in already swollen nodes in my neck and clavicle area.anybody else noticed swelling after starting...

Started ibrutnib 8 days ago and have noticed swelling in already swollen nodes i...

Ernster

•6 years ago

2 Replies

Having b-pll

a few times i and a couple others have been questioned about posting here because b-pll is so rare. However i happened across something on the Leukemia and...

a few times i and a couple others have been questioned about posting here becaus...

Hidden

•6 years ago

8 Replies

CLLSA Conference laptop needs replacement

A message from the main CLLSA site that you may have missed. Our faithful laptop we use at conferences is reaching the end of its useful life. We need to...

A message from the main CLLSA site that you may have missed. Our faithful lapto...

Myrddin

•6 years ago

10 Replies

No newsfeed again today!

Sorry to keep bothering you but for some reason I stopped getting the daily newsfeed .... Think nobody else has this problem this time .... can you please...

Sorry to keep bothering you but for some reason I stopped getting the daily news...

1ofakind

•6 years ago

2 Replies

Rebooting the San Diego CLL Support Group this Wednesday, April 3

Hi, We are pleased to announce that Wednesday April 3rd, 2019 at 4 PM we will have the first San Diego CLL Society Support and Education Meeting at the public...

Hi, We are pleased to announce that Wednesday April 3rd, 2019 at 4 PM we will ha...

bkoffman

CLL CURE Hero•6 years ago

1 Reply

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2019

I just watched Nada’s Inspiring video and I wondered what medication she was given that led to her good health. I was diagnosed in Nov 2018

Has anyone been on the combination therapy of Venetoclax, Ibrutinib and Obinutuzumab?

Looking for a resource re treatment for CLL/SLL

Increase Red Blood Cells?

night sweats

Thank God for great doctors & MD Anderson

what does p53 abnormal 50 percent mean

Starting Portland, Oregon CLL Support Group soon!

CLL Rituximab - first Rituxan Hycela Shot went well!

Hydration and Venetoclax

Grastofil shots

Cll and my mutation

New Jersey CLL Support Group

New to this site. Introduction

How many of us develop large b cell lymphomas

Update

New York City -- CLL Patient Support Group April 14, 2019 Sunday 3 pm – 5 pm 1305 York Ave, New York, NY (Manhattan)

Worried about financial ruin...

Fingers Crossed

Any issues with imbruvica and CBD Oil?

Feel pin pricks

Test for Patients' Treatment Response to Chronic Lymphocytic Leukemia Cut to 1 Day

What did my doctor just say? “Medicalese” translations

Taken Off In. Due to Afib

Swelling in neck

Neck nodes swelling

Having b-pll

CLLSA Conference laptop needs replacement

No newsfeed again today!

Rebooting the San Diego CLL Support Group this Wednesday, April 3

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