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CLL Support

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All posts for October 2017

Clinical Trial Navigator to Navigate the Clinical Trial Site? .... Sounds Helpful.

On today's Patient Power mailing comes information that seems to be quite helpful for anyone, who like me, has ventured online to search out a clinical trial...

On today's Patient Power mailing comes information that seems to be quite helpfu...

gemit2000

•7 years ago

2 Replies

Very nervous and anxious.

Hi everyone which is reading my post. I just a week ago was diagnosed with CLL but didn't see my hematologist yet after the initial blood test in his office. I...

Hi everyone which is reading my post. I just a week ago was diagnosed with CLL b...

Zheny

•7 years ago

25 Replies

In the news today article linking sugar and cancer cell growth

https://globalnews.ca/news/3814185/sugar-and-cancer/ Just noticed this article in the news today linking sugar to cancer cell growth. The link to the original...

https://globalnews.ca/news/3814185/sugar-and-cancer/ Just noticed this article i...

Glees

•7 years ago

10 Replies

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Port installed-Chemo Round1 starts Monday

Opted for the Portacath to receive my chemo (in Canada done via infusion) of FCR. The Port installation was done yesterday morning, so the afternoon was a...

Opted for the Portacath to receive my chemo (in Canada done via infusion) of FCR...

Marie-54

•7 years ago

6 Replies

CLL story in the Northern Echo UK

http://www.thenorthernecho.co.uk/news/15607122.Sharing_her_journey__blood_cancer_patient_tells_her_story_to_help_others

http://www.thenorthernecho.co.uk/news/15607122.Sharing_her_journey__blood_cance...

Myrddin

•7 years ago

10 Replies

Results back from the FISH

Hello there everyone, Got the results back from the test today and I'm chromosome 12 deleted (good prognosis she told me) and while my spleen and liver have...

Hello there everyone, Got the results back from the test today and I'm chromoso...

yoniboi

•7 years ago

7 Replies

Coated tongue

This may seem an unusual question but does anyone else suffer from a tongue that is coated in what appears to be “putty”. Despite stringent mounts hygiene the...

This may seem an unusual question but does anyone else suffer from a tongue that...

Chloe2057

•7 years ago

9 Replies

FR Treatment 6 of 6

Last week of treatment! I made it through all 6 rounds after Friday. I sometimes feel like I struggle to stay focused with my thoughts. I have read about...

Last week of treatment! I made it through all 6 rounds after Friday. I somet...

Lorna47

•7 years ago

6 Replies

AIHA and ITP

I just started treatment with Rituxan and Bendeka for my CLL. After the first treatment I had to have 4 blood transfusions and started on high dose steroids...

I just started treatment with Rituxan and Bendeka for my CLL. After the first tr...

J-girl

•7 years ago

8 Replies

bendamustine

has anyone ever been treated with just Bendamustine alone without a monoclonal antibody?

has anyone ever been treated with just Bendamustine alone without a monoclonal a...

greygirl

•7 years ago

16 Replies

The Vaccine is Dead. Long Live the Vaccine!

Chris likely mentioned GSK's new Shingrix vaccine that's been approved in Canada...

gemit2000

•7 years ago

2 Replies

Considering obstructive sleep apnoea and enlarged tonsils as a cause of fatigue

So, today I saw a respiratory doctor at the request of my CLL team. Due to my terrible snoring (sorry wifey!) and what he states are very enlarged tonsils the...

So, today I saw a respiratory doctor at the request of my CLL team. Due to my te...

AdrianUK

•7 years ago

9 Replies

First day on Clinical Trial Ibrutinib / Venetoclax

I started my first round today on IB. It's been 2 years since I was diagnosed with CLL. I have been on W&W up until now. At first I refused treatment and tried...

I started my first round today on IB. It's been 2 years since I was diagnosed wi...

BCTexas

•7 years ago

38 Replies

Inbrutinib in Canada

Is this drug covered for seniors as a first line treatment in the province of Ontario?

Is this drug covered for seniors as a first line treatment in the province of On...

max64

•7 years ago

21 Replies

Thank you all

Thank you for this help here, I was getting very stressed with all sorts of things whilst waiting for my next Consultant appointment, which I have just had and...

Thank you for this help here, I was getting very stressed with all sorts of thin...

zaax

•7 years ago

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Suffering on -going Depression

I have been suffering on-going serious Depression for many years now. Sadly in the UK the UK Mental Health Support Services are in many areas abysmal. I have...

I have been suffering on-going serious Depression for many years now. Sadly in t...

Chloe2057

•7 years ago

3 Replies

Enlarged spleen

I was diagnosed in 2010 with CLL. no symptoms, WBC around 30, platelets fine, as are red blood cells etc. I had a kidney infection in summer and my GP noticed...

I was diagnosed in 2010 with CLL. no symptoms, WBC around 30, platelets fine, as...

Mandy56

•7 years ago

7 Replies

CLL Society and Cleveland Clinic Free Patient and Caregiver Educational Forum on Nov. 11

The CLL Society, LLS and the Cleveland Clinic are hosting a Patient and Caregiver Forum on Nov. 11. It is going to be a super educational experience with CLL...

The CLL Society, LLS and the Cleveland Clinic are hosting a Patient and Caregive...

bkoffman

CLL CURE Hero•7 years ago

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CLL and Vitamin C

I was thinking of getting some Vitamin C IV and read some posts from a few years ago that said vitamin C might overstimulate lymphocyte production. Now I'm...

I was thinking of getting some Vitamin C IV and read some posts from a few years...

Elle_V

•7 years ago

49 Replies

Tramadol effect

Hi, have been on tramadol for Osteroarthiritis for 9 months and on 8 x 50 gr aswell as paracetamol 6x 500 mg and to be honest took 12 x ,50 mg because of the...

Hi, have been on tramadol for Osteroarthiritis for 9 months and on 8 x 50 gr asw...

hjewest

•7 years ago

10 Replies

Too much stress

Hi I was diagnosed 18 months ago,and on w and w but lately have developed very high levels of stress.I have read an article that cll can invade the central...

Hi I was diagnosed 18 months ago,and on w and w but lately have developed very h...

Largsvegas

•7 years ago

13 Replies

Treatment

Good Afternoon All; Was diagnosed with CLL about two years ago and in the W/W stage. My doc says no treatment until late next year or early 2019. What is...

Good Afternoon All; Was diagnosed with CLL about two years ago and in the W/...

BlueGillfisherman

•7 years ago

9 Replies

Randomised control trials: what makes them the medical research gold standard? Plus how do drugs get from discovery to approval?

Here are a couple of articles by biostatistics academics explaining in easily readable articles - (1) Why the randomised control trial is the best...

Here are a couple of articles by biostatistics academics explaining in easily re...

AussieNeil

Administrator•7 years ago

1 Reply

Health Check: does drinking alcohol kill the germs it comes into contact with?

Alcohol is a well-known disinfectant and some have speculated it may be useful for treating gut infections. Could alcohol be a useful agent to treat tummy...

Alcohol is a well-known disinfectant and some have speculated it may be useful f...

AussieNeil

Administrator•7 years ago

2 Replies

Ibrutinib Week 1

So I started my 1st dose last Mon evening and have been taking 2 pills every night at 10pm. I make sure to stop eating at 8pm, so the drug is not directly...

So I started my 1st dose last Mon evening and have been taking 2 pills every nig...

Mellyjake

•7 years ago

18 Replies

Should men and women be treated differently?

In CLL muated/unmutated is beginning to matter in treatment choice.. but what about the other large component ...sex?? Surely in the fledgling era of...

In CLL muated/unmutated is beginning to matter in treatment choice.. but what ab...

Cllcanada

Exhausting HC MBL

Hi I am Ali just diagnosed with HC MBL. I am exhausted all day hence why I demanded blood tests. I can't figure out why the medical profession wil not listen...

Hi I am Ali just diagnosed with HC MBL. I am exhausted all day hence why I deman...

Lunagal

•7 years ago

6 Replies

Little red dots

I have noticed these little red dots on my arms lately they just show up then go away sometimes they will look like they dried up! An area will itch and I will...

I have noticed these little red dots on my arms lately they just show up then go...

sspoloric

•7 years ago

7 Replies

Ibrutinib Pain in Chest

Hi Everyone. I been on Ibrutinib for 2 weeks now. I know I am in good hands with Dr Oconner at Columbia in New York and and also met with Dr Bryd at Ohio State...

Hi Everyone. I been on Ibrutinib for 2 weeks now. I know I am in good hands with...

Roydeane

•7 years ago

12 Replies

Imbruvica

Has anyone taken 3 pills a day and if so....how did it effect you?

Mrains

•7 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for October 2017

Clinical Trial Navigator to Navigate the Clinical Trial Site? .... Sounds Helpful.

Very nervous and anxious.

In the news today article linking sugar and cancer cell growth

Port installed-Chemo Round1 starts Monday

CLL story in the Northern Echo UK

Results back from the FISH

Coated tongue

FR Treatment 6 of 6

AIHA and ITP

bendamustine

The Vaccine is Dead. Long Live the Vaccine!

Considering obstructive sleep apnoea and enlarged tonsils as a cause of fatigue

First day on Clinical Trial Ibrutinib / Venetoclax

Inbrutinib in Canada

Thank you all

Suffering on -going Depression

Enlarged spleen

CLL Society and Cleveland Clinic Free Patient and Caregiver Educational Forum on Nov. 11

CLL and Vitamin C

Tramadol effect

Too much stress

Treatment

Randomised control trials: what makes them the medical research gold standard? Plus how do drugs get from discovery to approval?

Health Check: does drinking alcohol kill the germs it comes into contact with?

Ibrutinib Week 1

Should men and women be treated differently?

Exhausting HC MBL

Little red dots

Ibrutinib Pain in Chest

Imbruvica

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