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CLL Support

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All posts for August 2019

ANYBODY ELSE IN AFIB?

I have been on Imbruvica for almost two years and it has been wonderful. It has given me a completely normal life and I’m 7 years in. If a doctor looked at...

I have been on Imbruvica for almost two years and it has been wonderful. It has...

RK69

•5 years ago

38 Replies

Imbruvica and fatigue

I've been on imbruvica for over three years. For the past year I have a lot of fatigue especially by late afternoon. I do pretty good in the morning but if I...

I've been on imbruvica for over three years. For the past year I have a lot of f...

Jamstev71

•5 years ago

4 Replies

Sugar and cancer, in particular Chronic Lymphocytic Leukaemia (CLL/SLL) – what you need to know

We've had a few questions lately about whether we should avoid sugar after a diagnosis of CLL, from members concerned about the influence of sugar in their...

We've had a few questions lately about whether we should avoid sugar after a dia...

AussieNeil

Administrator•5 years ago

36 Replies

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Dog Vaccinations

For those of us with compromised immune systems should we be cautious around a puppy that has just received its vaccinations of DHPPi and Lepto? DHPPi is a...

For those of us with compromised immune systems should we be cautious around a p...

RobertCLL

•5 years ago

9 Replies

BP rising

Almost 1 year on Ibrutinib and my blood pressure has been rising .... My Dr sent me to cardiologist for rutine no problems with afib but 14/8 from 11/7 .......

Almost 1 year on Ibrutinib and my blood pressure has been rising .... My Dr sent...

antonb

•5 years ago

1 Reply

Medicare will begin nationwide coverage of CAR T-cell therapy

Medicare will begin nationwide coverage of CAR T-cell therapy, a complicated treatment for some cancer patients who have run out of other treatment options,...

Medicare will begin nationwide coverage of CAR T-cell therapy, a complicated tre...

The_Eagle

•5 years ago

5 Replies

Help with questions for a new doctor please

Good morning or whatever time it is where you are. It is a beautiful morning here 🇨🇦 Finally, my appointment with a new doctor is happening on Sept. 11th....

Good morning or whatever time it is where you are. It is a beautiful morning h...

studebaker

•5 years ago

4 Replies

2019 flu jab info (UK specific)

Hi all, This is specific for UK based people. I was in my GP waiting room (accompanying my mother) when I overheard the receptionist say “yes, we are taking...

Hi all, This is specific for UK based people. I was in my GP waiting room (acco...

Oleboyredw-uk

•5 years ago

23 Replies

Retiring for Good

Hi, I guess this decision is more of a struggle than I realized, seeing that I blogged on it twice. But I have given up practicing medicine to focus...

Hi, I guess this decision is more of a struggle than I realized, seeing that I b...

bkoffman

CLL CURE Hero•5 years ago

48 Replies

Chimming in

Dear All, this is my first time writing and an introduction. I am glad to be taking this time to chim in to the conversation. I plan to be more specific next...

Dear All, this is my first time writing and an introduction. I am glad to be tak...

KuluJimmi

•5 years ago

4 Replies

A long term cll patient

I know some of my issues and problems are nothing compared to some of you. I am losing my hair. On iIb I also have heavy bruising. I have other issues but I...

I know some of my issues and problems are nothing compared to some of you. I am...

NANACAROL

•5 years ago

7 Replies

Bone pain

I have been on ibrutinib for 4 months and the past week I have been having pain in my knee and ankle. Has anyone experienced random bone pain and how long did...

I have been on ibrutinib for 4 months and the past week I have been having pain ...

Lulu8581

•5 years ago

18 Replies

Severe reaction to FCR

I posted a while ago regarding treatment options. In the end I chose FCR rather than entering the Flair trial as my markers met with a good outcome from FCR....

I posted a while ago regarding treatment options. In the end I chose FCR rather ...

Racing1961

•5 years ago

30 Replies

6 Videos from OncLive - Drs. Flinn, Davids, Kahl, & Pagel - Focus on Chemo Free Frontline Treatments

Website view: https://onclive.cmail20.com/t/ViewEmail/j/660EE76BB4DAFE172540EF23F30FEDED/DF2046A8F4B3A869F039C523302FD418 (Note: Moderate use of "Med-Speak"...

Website view: https://onclive.cmail20.com/t/ViewEmail/j/660EE76BB4DAFE172540EF23...

lankisterguy

Volunteer•5 years ago

1 Reply

What do you do when you are MRD Negative?

I just learned I am MRD negative on Venetoclax and Rituximab. We had been planning on adding calquence. My doctor still wants to do that. It seems he wants to...

I just learned I am MRD negative on Venetoclax and Rituximab. We had been planni...

profrich

•5 years ago

34 Replies

Test Before Treat

We believe this might be our most important campaign ever- to get everyone tested before each and every treatment because our CLL can change over time, and...

We believe this might be our most important campaign ever- to get everyone teste...

bkoffman

CLL CURE Hero•5 years ago

9 Replies

Using CBD oil to sleep

My sleeping was poor past 12 months, averaging 3.5 hours a night. Two months ago, upon advice of a naturopath and with pharmacist approval, I started using CBD...

My sleeping was poor past 12 months, averaging 3.5 hours a night. Two months ago...

Irishgreek

•5 years ago

5 Replies

Thanks for infusion encouragement

Thanks to all who gave me encouragement about my first infusion... I had a SmartPort so that it would go easier... it really went well today... your...

Thanks to all who gave me encouragement about my first infusion... I had a Smart...

Butitisme

•5 years ago

2 Replies

Ibrutinib Side Effect???

Hello CLL supporters, My husband Gary’s CLL was found October 2017 and we were hoping he could go many years without treatment. Unfortunately he got really...

Hello CLL supporters, My husband Gary’s CLL was found October 2017 and we were...

Shalom33

•5 years ago

20 Replies

Patient Power Video updates on Blood Testing and New Treatment updates

Patient Power email here: https://www.patientpower.info/index.cfm?objectid=0F37AC70-C38E-11E9-9C33000D3A30C4F8 - Includes video updates from two of my...

Patient Power email here: https://www.patientpower.info/index.cfm?objectid=0F37...

lankisterguy

Volunteer•5 years ago

2 Replies

Lung nodule

Hi all, On the CT-scan is a lung nodule visable with a diameter of 6 mm. Can this be cll/sll related and is somebody familiar with lung nodules? Thanks

Hi all, On the CT-scan is a lung nodule visable with a diameter of 6 mm. Can thi...

TOFK

•5 years ago

12 Replies

Jaw pain

Anyone have jaw pain while on Imbruvica?

Dom57

•5 years ago

10 Replies

SLL..

Hi i would love to hear from some people with SLL......LYMPHOMA How different is this from CLLas far as symptoms go . .thanks

Hi i would love to hear from some people with SLL......LYMPHOMA How different ...

Stelladoro

•5 years ago

26 Replies

Lymphoma Canada’s 3rd Annual National Conference for lymphoma patients Saturday, September 21, 2019 8:00am - 5:00pm Hilton Toronto

Register today for Lymphoma Canada’s 3rd Annual National Conference for lymphoma patients, caregivers, and healthcare professionals....

lankisterguy

Volunteer•5 years ago

3 Replies

Relapsing after remission

I've been in remission for about two years now. Just came from a routine 6 month check-up. My Hematologist noticed that my platelets have dropped below normal...

I've been in remission for about two years now. Just came from a routine 6 month...

dianejoyce

•5 years ago

9 Replies

Other things to consider

Everyone that's in the age bracket I guess I would say 60 up should pay attention to your teeth. I would say there are so many of us that when we were young we...

Everyone that's in the age bracket I guess I would say 60 up should pay attentio...

oldguy68

•5 years ago

1 Reply

Should I get a blood transfusion?

I just had a port put in a couple of days ago... but after reading the CLL sites, I am having second thoughts about having the blood transfusion. I didn't...

I just had a port put in a couple of days ago... but after reading the CLL sites...

Butitisme

•5 years ago

13 Replies

Has CLL damaged a my sperm?

Has CLL damaged a my sperm? Diagnosed may 2014, and treated for swollen painful lymph nodes March 2018. Took Ibrutinib for 9 months, and been off ibrutinib...

Has CLL damaged a my sperm? Diagnosed may 2014, and treated for swollen painful...

tomcelic

•5 years ago

16 Replies

Diagnosed Influenza A Positive

Anyone gone through the flu with CLL? Any tips? The severe bone pain and weakness but no pneumonia. Diagnosed Influenza A Positive yesterday. I have had CLL...

Anyone gone through the flu with CLL? Any tips? The severe bone pain and weaknes...

JC70

•5 years ago

16 Replies

CLLSA NOTTINGHAM CONFERENCE. THURSDAY 5 SEPTEMBER at Nottingham Racecourse, Colwick Park NG2 4BE

Come along and hear Dr Chris Fox, Consultant Haematologist, speak on ‘CLL IN 2019 AND BEYOND’. Learn about the latest developments and what the future holds...

Come along and hear Dr Chris Fox, Consultant Haematologist, speak on ‘CLL IN 201...

pkguk2

Partner•5 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2019

ANYBODY ELSE IN AFIB?

Imbruvica and fatigue

Sugar and cancer, in particular Chronic Lymphocytic Leukaemia (CLL/SLL) – what you need to know

Dog Vaccinations

BP rising

Medicare will begin nationwide coverage of CAR T-cell therapy

Help with questions for a new doctor please

2019 flu jab info (UK specific)

Retiring for Good

Chimming in

A long term cll patient

Bone pain

Severe reaction to FCR

6 Videos from OncLive - Drs. Flinn, Davids, Kahl, & Pagel - Focus on Chemo Free Frontline Treatments

What do you do when you are MRD Negative?

Test Before Treat

Using CBD oil to sleep

Thanks for infusion encouragement

Ibrutinib Side Effect???

Patient Power Video updates on Blood Testing and New Treatment updates

Lung nodule

Jaw pain

SLL..

Lymphoma Canada’s 3rd Annual National Conference for lymphoma patients Saturday, September 21, 2019 8:00am - 5:00pm Hilton Toronto

Relapsing after remission

Other things to consider

Should I get a blood transfusion?

Has CLL damaged a my sperm?

Diagnosed Influenza A Positive

CLLSA NOTTINGHAM CONFERENCE. THURSDAY 5 SEPTEMBER at Nottingham Racecourse, Colwick Park NG2 4BE

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