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CLL Support

22,532 members • 38,709 posts

All posts for May 2019

FDA Frontline Approval of Venetoclax and Obinituzumab in the USA

Hi, Venetoclax in combination with obinutuzumab has been approved frontline for CLL. This is the first fixed duration non-chemo approach for CLL. For more on...

Hi, Venetoclax in combination with obinutuzumab has been approved frontline for ...

bkoffman

CLL CURE Hero•5 years ago

43 Replies

WBC

I went to the ER the other day for pain in my liver and spleen areas. I guess the hospital is use to people seeking pain meds. I won't even take a vitamin....

I went to the ER the other day for pain in my liver and spleen areas. I guess th...

Mamawof25

•5 years ago

13 Replies

Difficult conversation.

One of the hardest chats about my medical condition will be with my three grandkids. They know that Grandad is ill and can’t do everything he used to do...

One of the hardest chats about my medical condition will be with my three gr...

MartyR

•5 years ago

15 Replies

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Old fart with CLL

Started may 1st on 420mg imbruvica. Just turned 67 in January hope to be around a few more years to harass my loving wife.🤣 . Only side effects are some...

Started may 1st on 420mg imbruvica. Just turned 67 in January hope to be around...

Hidden

•5 years ago

17 Replies

Imbruvica

3 days ago Good Afternoon All. I have a few more questions before I proceed with the Imbruvica/Ibruntinib. 1. Did anyone experience any weight loss or...

3 days ago Good Afternoon All. I have a few more questions before I procee...

oso7672

•5 years ago

3 Replies

Last CLL Society Educational Forum for 2018-19 this Saturday in San Diego

Hi, Our very last CLL Society Patient and Caregiver Educational Forum will be in San Diego this Saturday morning at Moore Cancer Center For details see:...

Hi, Our very last CLL Society Patient and Caregiver Educational Forum will be in...

bkoffman

CLL CURE Hero•5 years ago

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Blood clot at base of existing tooth

I started ibrutinib 3 weeks ago. I have a bloodclot at the base of an existing tooth. Does anyone have any experience with this? Thank you.

I started ibrutinib 3 weeks ago. I have a bloodclot at the base of an existing ...

onu1tadi2

•5 years ago

3 Replies

Discomfort from BMB

Thanks so much for everyone’s reassurance re BMB pain no big deal. I truly appreciate your thoughts and advice. I’m very reassured that the “bark” of this...

Thanks so much for everyone’s reassurance re BMB pain no big deal. I truly appre...

2016miniman

•5 years ago

5 Replies

Scared badly.

Has wbc done in April. Had it done 3 times so far. Had anxiety attacks each time. My WBC has been 16 and this last one 17. I’m terrified it’s leukemia. Online...

Has wbc done in April. Had it done 3 times so far. Had anxiety attacks each time...

Snowpaw

•5 years ago

16 Replies

Discomfort and recovery from bone marrow biopsy

Hi..having bone marrow biopsy tomorrow and truly I'm scared. If anyone could share some thoughts about the procedure, the level of discomfort (during and...

Hi..having bone marrow biopsy tomorrow and truly I'm scared. If anyone could sha...

2016miniman

•5 years ago

38 Replies

What is your lymphocyte count on Venetoclax?

This is a follow-up to my last question about taking 200 mg of venetoclax instead of 400 mg. Some people stopped at 200 mg because their counts were good. If...

This is a follow-up to my last question about taking 200 mg of venetoclax instea...

profrich

•5 years ago

14 Replies

Ibrutinib and funding in Ontario

Can someone please clear up an issue with IBRUTINIB funding in Ontario I was under the impression it is now funded for front line treatment naive patients who...

Can someone please clear up an issue with IBRUTINIB funding in Ontario I was un...

Kshinester

•5 years ago

11 Replies

Starting Chemo tomorrow

I have held off for 9 years now and tomorrow is the DDAY for me. NHL CD-20. Had a scan yesterday after the last one 18 months ago. The nodes in the neck have...

I have held off for 9 years now and tomorrow is the DDAY for me. NHL CD-20. Had ...

DDay2012

•5 years ago

20 Replies

Cells dying in the retina

Has anyone had severe eye sight decreasing after being on Ibrutinib 240mg a day? I’ve been on it for 2 years. My eye specialist (here in CA) had me go to UCLA...

Has anyone had severe eye sight decreasing after being on Ibrutinib 240mg a day?...

GailCat3

•5 years ago

6 Replies

Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan

My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was...

My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He re...

B-PLL_Pakistan

•5 years ago

6 Replies

Chest fullness / Chest discomfort

Hello all- Second post here and trying to keep the hypochondria in check. For the past week or so I have head a fullness or discomfort in my chest. I would...

Hello all- Second post here and trying to keep the hypochondria in check. For th...

DamnIHaveCLL

•5 years ago

5 Replies

CLLSA Bournemouth Conference

Afternoon everyone Just to say how great it was to meet so many wonderful people on in Bournemouth on Saturday. It was a privilege to share my own experiences...

Afternoon everyone Just to say how great it was to meet so many wonderful people...

MattGGibson

•5 years ago

2 Replies

Nausea

Seen my Haem/Onc today. She reviewed abdo pelvis CT scan. Said the Multiple enlarged nodes were to be expected with CLL. Feels that they are not cause for...

Seen my Haem/Onc today. She reviewed abdo pelvis CT scan. Said the Multiple enla...

Indie1234

•5 years ago

4 Replies

Nana

I was diagnosed with cll just before Christmas in 2018. Needless to say I was absolutely floored as I did not even feel sick. I was referred to Dr. Ahmed Galal...

I was diagnosed with cll just before Christmas in 2018. Needless to say I was ab...

Hidden

•5 years ago

14 Replies

Treatment in 10 days

Howdy I am looking forward to soaking the up information available here from all. They found my CLL on routine check up 8 years ago-have been doing wait and...

Howdy I am looking forward to soaking the up information available here from al...

wilhoitaz

•5 years ago

21 Replies

info on pancreatic cancer

My beloved friend just had surgery on her pancreas. Please givee me info about support groups.

My beloved friend just had surgery on her pancreas. Please givee me info about s...

agatha123

•5 years ago

2 Replies

CLL Ireland national Patient and Carer information day in Dublin June 8th

Our 2019 National CLL Patient & Carer Information Day offer a great opportunity to hear from some of the world's most informed CLL Patient Advocates and one...

Our 2019 National CLL Patient & Carer Information Day offer a great opportunity...

Irishcll

•5 years ago

8 Replies

CLL night sweats

Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC 50,000..any relief for this?

Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC...

truff4507

•5 years ago

10 Replies

Richters...my brother passed away

My brother passed away last week ..his CLL transformed to Richters in July 2018. They tried various chemotherapy...we even had a 100% bone marrow...

My brother passed away last week ..his CLL transformed to Richters in July 2018...

nazkaur

•5 years ago

40 Replies

Anti-vaccine Hype is a Threat to People with Cancer

"A call to action—We all need to do our part to combat fake or inaccurate health news. Misinformation about any health topic is troubling and potentially...

"A call to action—We all need to do our part to combat fake or inaccurate health...

AussieNeil

Administrator•5 years ago

6 Replies

The future is looking brighter for untreated CLL patients.

Non chemo therapies for untreated CLL begin to gain approval. For those of us on Watch and Wait, the future is looking bright recent trials in the UK Clarity...

Non chemo therapies for untreated CLL begin to gain approval. For those of us o...

Hidden

•5 years ago

5 Replies

Feeling worried

Now those of you who know me will realise I never let anything get to me not even when I got dx or started treatment . But 5 weeks ago I had a turn whilst out...

Now those of you who know me will realise I never let anything get to me not eve...

cartwheels

•5 years ago

4 Replies

Good News

I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells....

I have had the results of my bone marrow biopsy this week and my six months of F...

dandelup

•5 years ago

9 Replies

Anyone doing 200 mg Venetoclax instead of 400 mg?

My numbers are all good on 200 mg venetoclax including very low ALC. Whenever I bump to 400 mg my neutrophils go too low. Different people absorb and...

My numbers are all good on 200 mg venetoclax including very low ALC. Whenever I ...

profrich

•5 years ago

88 Replies

Now Hodgkin Lymphoma

Been on a ibrutinib now for almost 4 1/2 years because of the CLL. Has done wonders to keep my blood scores in check. Almost normal. About 10 days ago I was...

Been on a ibrutinib now for almost 4 1/2 years because of the CLL. Has done wond...

leopardo

•5 years ago

12 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2019

FDA Frontline Approval of Venetoclax and Obinituzumab in the USA

WBC

Difficult conversation.

Old fart with CLL

Imbruvica

Last CLL Society Educational Forum for 2018-19 this Saturday in San Diego

Blood clot at base of existing tooth

Discomfort from BMB

Scared badly.

Discomfort and recovery from bone marrow biopsy

What is your lymphocyte count on Venetoclax?

Ibrutinib and funding in Ontario

Starting Chemo tomorrow

Cells dying in the retina

Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan

Chest fullness / Chest discomfort

CLLSA Bournemouth Conference

Nausea

Nana

Treatment in 10 days

info on pancreatic cancer

CLL Ireland national Patient and Carer information day in Dublin June 8th

CLL night sweats

Richters...my brother passed away

Anti-vaccine Hype is a Threat to People with Cancer

The future is looking brighter for untreated CLL patients.

Feeling worried

Good News

Anyone doing 200 mg Venetoclax instead of 400 mg?

Now Hodgkin Lymphoma

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