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CLL Support

22,526 members • 38,689 posts

All posts for April 2017

Bone marrow transplant

I just found out from my niece that my brother had a bone marrow transplant. Was shocked no one told me. He had melanoma did a trial drug then got lymphoma.I...

I just found out from my niece that my brother had a bone marrow transplant. Was...

greygirl

•7 years ago

20 Replies

Great interview with Dr. Furman of Cornell. Important discussion of new treatments verse FCR. Very positive for all of us.

Watch at: https://youtu.be/-eJhDFbEIYY Sorry if this was shown before.

Hoffy

•7 years ago

23 Replies

High WBC and it does matter to my doctor

I think perhaps I should print out Maggie_b's post from yesterday, "High WBC but it doesn't matter" to give to my hemo/oncologist (along with other similar...

I think perhaps I should print out Maggie_b's post from yesterday, "High WBC but...

gemit2000

•7 years ago

57 Replies

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Pain in lower lest side

Had this before when I came down with shingles and it's never quite gone away .sometimes it's OK then others like now it's draining. Had my ct last week and...

Had this before when I came down with shingles and it's never quite gone away .s...

cartwheels

•7 years ago

4 Replies

Update on temporarily ceasing Imbruvica for surgery

My oncologist stop me to take Imbruvica for the time I was in the hospital and 2 weeks after I was allow to take only 2 pills a day for 2 weeks , I am back...

My oncologist stop me to take Imbruvica for the time I was in the hospital and ...

Majer

•7 years ago

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TPLL

Is there ever anything posted on this site or in Health Unlocked about t Cell prolymphocytic leukemia? My husband passed away in December of this disease and...

Is there ever anything posted on this site or in Health Unlocked about t Cell p...

Jince45

•7 years ago

15 Replies

Leg Cramps

RJR1

•7 years ago

15 Replies

No longer eligible for FLAIR trial

Having been called back to see my consultant for what I thought was a routine check up, was caught off guard to be told that I could not continue with the...

Having been called back to see my consultant for what I thought was a routine ch...

KAS8

•7 years ago

19 Replies

Obinutuzumab (gazyva)

Has anyone tried this treatment? Did you have any reactions? I would love to know more about it as my doctor feels this is the treatment for me in the...

Has anyone tried this treatment? Did you have any reactions? I would love to k...

Jemisavs5

•7 years ago

18 Replies

Hyperthermie

Last saturday i came home from a 10 days stay in a clinic. I had there hyperthermie treatments, local and whole body. It is based on the principle that cancer...

Last saturday i came home from a 10 days stay in a clinic. I had there hyperther...

Anja-Jantina

•7 years ago

12 Replies

Digestion

Hi, as I have recently posted I have just finished first session/week of FCR. I find this site extremely helpful and like having a friend who you can turn to...

Hi, as I have recently posted I have just finished first session/week of FCR. I...

sallyplest

•7 years ago

6 Replies

Videos from London members conference 2016 available

There were three presentations videoed at this meeting, two talks by Claire Dearden Consultant Haematologist and Head of the CLL Unit at Royal Marsden...

There were three presentations videoed at this meeting, two talks by Claire Dear...

Myrddin

•7 years ago

5 Replies

Acupuncture

I've written about this topic before, but it's been some time. Somewhere along my eight years of W&W I discovered acupuncture for fatigue relief. By last fall,...

I've written about this topic before, but it's been some time. Somewhere along m...

Ducksoup

•7 years ago

18 Replies

Ibrutinib stopped - What treatment next ?

I am a 78 year old male living in the UK. Started treatment 3 years ago. Had two rounds of FCR which was stopped due to my bone marrow being wrecked. Managed...

I am a 78 year old male living in the UK. Started treatment 3 years ago. Had tw...

Haileybury

•7 years ago

16 Replies

Cba oil

Anyone tried cba oil (weed oil) for vaping etc and if so has it helped

cartwheels

•7 years ago

8 Replies

Too long of a post?

I have another CLL site I was on, American version. A famous doc who has CLL wrote a post about how smart it is to take your shoes off before entering house. I...

I have another CLL site I was on, American version. A famous doc who has CLL wro...

greygirl

•7 years ago

35 Replies

CLL Cure?

I read all these articles in various publications, and posts on this and other CLL related websites, regarding new and improved treatments for the control and...

I read all these articles in various publications, and posts on this and other C...

SOLLYTHEGOLLY

•7 years ago

10 Replies

Return of SLL

Hi All I was diagnosed with SLL in 2011, on w/w finally having chemo in Jan 2013. Have been in remission since then but unfortunately am fairly certain its...

Hi All I was diagnosed with SLL in 2011, on w/w finally having chemo in Jan 20...

Tigger53

•7 years ago

9 Replies

Taking our shoes off at the door

Hi, Happy Easter and Passover. To lighten things up, I wrote an article on the science of removing shoes before entering our homes. Take a look at here:...

Hi, Happy Easter and Passover. To lighten things up, I wrote an article on the s...

bkoffman

CLL CURE Hero•7 years ago

7 Replies

Is this normal?

Hi I was diagnosed in October 2015 with CLL. Recently I have felt very tired and a bit breathless. I am due to see consultant in May but am worried that it...

Hi I was diagnosed in October 2015 with CLL. Recently I have felt very tired and...

robertsw

•7 years ago

12 Replies

FCR, IBRUTINIB, VENETOCLAX what next...Stem Cell or CAR-T

Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is...

Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to h...

NMMP

•7 years ago

19 Replies

Ache in left arm

Hi I'm Debbie, I have just joined this site. I am 49 years old and I have been suffering with a dull ache in my left arm for about 4 months now. It's a...

Hi I'm Debbie, I have just joined this site. I am 49 years old and I have been s...

Northstar22

•7 years ago

11 Replies

Elevated Temperature

Hi Everybody, Hope you all had an enjoyable Easter. Some advice please ? Have come down with a cold .not good. Body temperate around 38.3c for the past few...

Hi Everybody, Hope you all had an enjoyable Easter. Some advice please ? Have c...

Hidden

•7 years ago

4 Replies

Unexpected death

Unfortunately, my father passed away.Under Imbruvica ,after using it for 8 months, his CLL turned into B CELL diffuse lymphoma (richter)which is very...

Unfortunately, my father passed away.Under Imbruvica ,after using it for 8 month...

chimini

•7 years ago

46 Replies

Week 2 Ibrutinin / rituximab update

Having had a good week one, things have changed little. - nauseas last couple of mornings post tablets - 200m into a walk, burning sensation from feet...

Having had a good week one, things have changed little. - nauseas last couple of...

KAS8

•7 years ago

17 Replies

Infections with CLL From Majer1

In January I was in the hospital for 2 weeks in New York with Pneumonia and Sepsis due to my low Immune system with CLL and Imbruvica I was very weak when...

In January I was in the hospital for 2 weeks in New York with Pneumonia and Seps...

Majer

•7 years ago

8 Replies

Commencing Venetoclax

Hi all, My beautiful mum has started a trial on Venetoclax, after disease progression at 29 months on ibrutinib. She had a week between medication and the CLL...

Hi all, My beautiful mum has started a trial on Venetoclax, after disease progre...

Natali

•7 years ago

14 Replies

Flair Trial - FCR first dose

Hi all Arrived hospital Monday morning 8.45am for first infusion of rituximab but pharmacy had lost my prescription, so after waiting 3hrs sent home to return...

Hi all Arrived hospital Monday morning 8.45am for first infusion of rituximab bu...

sallyplest

•7 years ago

22 Replies

Preventing influenza

Flu vaccinations are now available in Australia - I had mine last Friday. 'Most clinical trials that have looked at how effective the flu vaccine is were...

Flu vaccinations are now available in Australia - I had mine last Friday. 'Mo...

AussieNeil

Administrator•7 years ago

2 Replies

ACP196 and weight gain?

I've been participating in ACP196 trial for 2 years now. I have been blessed with great response and no side effects - other than weight gain. Has anyone...

I've been participating in ACP196 trial for 2 years now. I have been blessed wit...

GratefulOne

•7 years ago

17 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2017

Bone marrow transplant

Great interview with Dr. Furman of Cornell. Important discussion of new treatments verse FCR. Very positive for all of us.

High WBC and it does matter to my doctor

Pain in lower lest side

Update on temporarily ceasing Imbruvica for surgery

TPLL

Leg Cramps

No longer eligible for FLAIR trial

Obinutuzumab (gazyva)

Hyperthermie

Digestion

Videos from London members conference 2016 available

Acupuncture

Ibrutinib stopped - What treatment next ?

Cba oil

Too long of a post?

CLL Cure?

Return of SLL

Taking our shoes off at the door

Is this normal?

FCR, IBRUTINIB, VENETOCLAX what next...Stem Cell or CAR-T

Ache in left arm

Elevated Temperature

Unexpected death

Week 2 Ibrutinin / rituximab update

Infections with CLL From Majer1

Commencing Venetoclax

Flair Trial - FCR first dose

Preventing influenza

ACP196 and weight gain?

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