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CLL Support

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All posts for February 2019

Often I read posts stating the use of immunotherapy drugs as first line treatment in other countries. How does a person bring about change ?

How to advocate for change ?

Jospencer

•6 years ago

3 Replies

AMA President Blames Insurers for Surprise Bills

Want to get a better idea of how the US medical "industry" works? Here's a short, but revealing interview with the current AMA President. Be sure to also read...

Want to get a better idea of how the US medical "industry" works? Here's a short...

cujoe

•6 years ago

4 Replies

Is Bone marrow flow test is necessary every year?

I had bone marrow biopsy and flow test when I was diagnosed with CLL. But now I came to know that it is necessary to have BM flow test every year. Please share...

I had bone marrow biopsy and flow test when I was diagnosed with CLL. But now I ...

Supratim

•6 years ago

4 Replies

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Living Well With CLL - with Dr. Nicole Lamanna

Great venue coming up March 6th 5:30 PM at Milleridge Inn, 585 N Broadway, Jericho, New York (Long Island) - sponsored by LI LLS - dinner served - reservations...

Great venue coming up March 6th 5:30 PM at Milleridge Inn, 585 N Broadway, Jeric...

SusanBo

•6 years ago

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Are there an Aussies on here who have had access to Venetoclax ?

Australia is about to announce the approval of Venetoclax for relapsed / refractory CLL/SLL. Just wondering if anyone on this page has had access either via a...

Australia is about to announce the approval of Venetoclax for relapsed / refract...

lymphomaoz

•6 years ago

12 Replies

mucuna and azilect

Do I need to quit taking Azilect before I start on mucuna?

researchuserwyler

•6 years ago

3 Replies

Ibrutinib = remission, you just need to be patient.

You may have noticed in my earlier post that I gave a time that my husband had been receiving Ibrutinib, which I think I said was a little over 3 years, I was...

You may have noticed in my earlier post that I gave a time that my husband had b...

lartington

•6 years ago

18 Replies

Reducing Imbruvica dosage

About to change daily Imbruvica dose by taking my 420 mg every other day rather than daily. Has anyone done this? Also, has anyone used Gelclair for mouth...

About to change daily Imbruvica dose by taking my 420 mg every other day rather ...

Survivor1951

•6 years ago

7 Replies

Blood test

Hi, my name is Lori. I've had CLL for 16 years now. I just finished a ten year trial of ABT-263. I recently progressed and had to come off the trial....

Hi, my name is Lori. I've had CLL for 16 years now. I just finished a ten year t...

Ldob63

•6 years ago

4 Replies

Lymph node swelling and discomfort?

About 3 1/2 years in and I have some node swelling (2 cm in groin area). Is some discomfort normal? I have heard some never have swelling and it only shows in...

About 3 1/2 years in and I have some node swelling (2 cm in groin area). Is some...

Njff

•6 years ago

4 Replies

3 choices

Ok guys I have a dilemma. I saw my hematologist today and I have to make a decision. I’ve been on watch and wait since my last chemo (FC) treatment 8 years...

Ok guys I have a dilemma. I saw my hematologist today and I have to make a decis...

DRADCLIFF

•6 years ago

21 Replies

CLLSA Liverpool Members Conference Jan 2019

The 2019 Liverpool members conference was held this year at The Conference Centre at LACE, and the keynote speaker was Professor Andrew Pettitt from the Royal...

The 2019 Liverpool members conference was held this year at The Conference Centr...

Myrddin

•6 years ago

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SLL with large mesenteric conglomeration

Hi all - I'm new to here and was diagnosed with SLL last August (2018). CT showed extensive lymph involvement with a large mass of lymph nodes (conglomeration)...

Hi all - I'm new to here and was diagnosed with SLL last August (2018). CT showe...

Jemorgen

•6 years ago

6 Replies

Drinking alcohol while on Imbruvica

Great to come across this website as I too am on Imbruvica I started two months ago after unsuccessful chemo. I am on three tablets a day and so far no side...

Great to come across this website as I too am on Imbruvica I started two month...

Sunshine395

•6 years ago

23 Replies

Helpful information

https://www.healthline.com/nutrition/15-best-foods-when-sick

Alaoun

•6 years ago

1 Reply

EMAILS

PLEASENO MORE MORE EMAILS FORNOW..TOO MANY..WILL

tlcladygiraffe

•6 years ago

1 Reply

Ibrutinib and Obinutuzumab with Venetoclax

Hello, I am new here. My husband needs to start first time treatment for CLL as soon as possible. He was given info. about the clinical trial which adds...

Hello, I am new here. My husband needs to start first time treatment for CLL as ...

Johnnyislander

•6 years ago

41 Replies

update on my lymphoma

I HAVE HAD MY 1O RADIATION TREATMETS..HOPING THE TUMPR IN MY PELVIS AREA HAS SHRUNK..NO SCAN YET..BUT NO PAIN..I AM FEELING GREt..continue praying for my...

I HAVE HAD MY 1O RADIATION TREATMETS..HOPING THE TUMPR IN MY PELVIS AREA HAS SHR...

tlcladygiraffe

•6 years ago

6 Replies

US Government Approval for Funding of CAR-T therapy

Hi, CMS approves CAR-T therapy payment, but with significant strings attached. For more details see:...

Hi, CMS approves CAR-T therapy payment, but with significant strings attached. F...

bkoffman

CLL CURE Hero•6 years ago

1 Reply

My wbc

I’m supposed to be on doxy for the rest of my life but I have not been able to take it in a long time Due to Mrsa. I’ve had 69 hip surgeries and about 2 weeks...

I’m supposed to be on doxy for the rest of my life but I have not been able to t...

Gatorfan

•6 years ago

1 Reply

Lola 69

I have been so concerned about Lola69. She was having such a hard time with Shingles and was hospitalized and waiting for test results and I have not seen any...

I have been so concerned about Lola69. She was having such a hard time with Shi...

Sis1Ap3

•6 years ago

5 Replies

Can I eat/drink Kumbucha if it isn't pasturiezed?

I was encouraged to drink green tea and Kumbucha.... if not paturized... does it work? Should I take things that are unpasturized? I have diverticulitis right...

I was encouraged to drink green tea and Kumbucha.... if not paturized... does it...

Butitisme

•6 years ago

5 Replies

Medical Alerts??

Hello I was diagnosed with CLL/SLL in December 2018. I have P deletion of 17th chromosome. I have been on Ibrutinib for 10 days and have seen dramatic...

Hello I was diagnosed with CLL/SLL in December 2018. I have P deletion of 17th...

210savannah

•6 years ago

9 Replies

Bloodstream infections

My father has bloodstream infections and his WBC count is 28000. Is this a serious state

My father has bloodstream infections and his WBC count is 28000. Is this a serio...

PRUTHVISINHJADAV

•6 years ago

1 Reply

New guy to the group.

I take my Imbruvica before breakfast, and was wondering if it can be taken after a meal. Evidently I am one of the lucky ones that have had no noticeable side...

I take my Imbruvica before breakfast, and was wondering if it can be taken after...

wondering1

•6 years ago

12 Replies

Headaches

I picked up a cold nearly a month ago and at one point I was coughing up green coloured Phlegm which has mostly cleared up now, the cough has also reduced. But...

I picked up a cold nearly a month ago and at one point I was coughing up green c...

Trev1

•6 years ago

12 Replies

Imunoglobulin

My imunoglobulin g is 4.08 .... very low? What's your opinion ? It looks like doesn't want to go up ! Still taking monthly Octagam .

My imunoglobulin g is 4.08 .... very low? What's your opinion ? It looks like do...

Deta1961

•6 years ago

4 Replies

My first visit to CLL Support Association

Started Imbruvica on Friday February 1, 2019. Ok for a couple of days and on Sunday nausea overcame me and I was quite ill. Started taking nausea pills...

Started Imbruvica on Friday February 1, 2019. Ok for a couple of days and on Su...

BobTerry62

•6 years ago

13 Replies

New SLL diagnosis

Hello all! I am a healthy 43 y/o male with a very recent diagnosis of SLL via lymph node biopsy. I suspect this has been going on for a few years as I have...

Hello all! I am a healthy 43 y/o male with a very recent diagnosis of SLL via l...

Mako625

•6 years ago

21 Replies

Thank you

To all the people that have replied to my query about 'red blotches ,been most helpful reading about your own experiences with the same problem, many thanks to...

To all the people that have replied to my query about 'red blotches ,been most h...

Aarree

•6 years ago

Be the first to reply

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2019

Often I read posts stating the use of immunotherapy drugs as first line treatment in other countries. How does a person bring about change ?

AMA President Blames Insurers for Surprise Bills

Is Bone marrow flow test is necessary every year?

Living Well With CLL - with Dr. Nicole Lamanna

Are there an Aussies on here who have had access to Venetoclax ?

mucuna and azilect

Ibrutinib = remission, you just need to be patient.

Reducing Imbruvica dosage

Blood test

Lymph node swelling and discomfort?

3 choices

CLLSA Liverpool Members Conference Jan 2019

SLL with large mesenteric conglomeration

Drinking alcohol while on Imbruvica

Helpful information

EMAILS

Ibrutinib and Obinutuzumab with Venetoclax

update on my lymphoma

US Government Approval for Funding of CAR-T therapy

My wbc

Lola 69

Can I eat/drink Kumbucha if it isn't pasturiezed?

Medical Alerts??

Bloodstream infections

New guy to the group.

Headaches

Imunoglobulin

My first visit to CLL Support Association

New SLL diagnosis

Thank you

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