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CLL Support

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All posts for April 2018

Confirmation of bloods

Is Platelets and blood count the same thing could some help me clear this up

Diva1986

•7 years ago

2 Replies

First. FCR treatment

Happy to report first day (of two) of treatment done and feel fine. Bit od a sticky moment half an hour in, feeling palpitations and breathless. Nurses think...

Happy to report first day (of two) of treatment done and feel fine. Bit od a st...

Mandy56

•7 years ago

10 Replies

What is the difference between being unmutated and mutated? When people are discussing treatment, this seems to be very important.

I realize I should know the answer, but my husband is 11q deletion. Is that mutated? Is one better than the other? I know my husband is more high risk because...

I realize I should know the answer, but my husband is 11q deletion. Is that muta...

kathymac52

•7 years ago

1 Reply

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trouble breathing

anyone have trouble breathing after imbruvaca side effects? ended up with fever for 2 weeks and they took me off. been close to a year and still have trouble...

anyone have trouble breathing after imbruvaca side effects? ended up with fever ...

chemosuxs

•7 years ago

1 Reply

Information

I was diagnosed wit CLL about three years ago and the Doc I go to is great. He explained everything about my condition at the time and all the Fish results....

I was diagnosed wit CLL about three years ago and the Doc I go to is great. He ...

BlueGillfisherman

•7 years ago

7 Replies

Is anyone using essential oils to help with the treatment of CLL?

I am a newbie to essential oils, and just wondering if anyone else is diffusing or using these oils. (I love Thieves, lemongrass, lavender...)

I am a newbie to essential oils, and just wondering if anyone else is diffusing ...

kathymac52

•7 years ago

8 Replies

Post venetoclax fatigue

Has anyone else stopped venetoclax in complete remission and felt fatigue? I took it for 22 months. Two months after stopping I get very tired.

Has anyone else stopped venetoclax in complete remission and felt fatigue? I too...

Corin850

•7 years ago

2 Replies

Improved telomerase mapping may aid development of anti-cancer drugs

Researchers at UC Berkeley have now mapped out the structure of telomerase using record high resolution images. 'According to the team, these...

Researchers at UC Berkeley have now mapped out the structure of telomerase using...

AussieNeil

Administrator•7 years ago

2 Replies

Hello my name is Donna. 56 yrs old, CLL diagnosis 2002, started FCR in Jan.

I was looking online for info on neurological side effects of FCR because I keep feeling "brain zaps". I found this page and signed up. So anyone else...

I was looking online for info on neurological side effects of FCR because I keep...

Hidden

•7 years ago

8 Replies

Is Imbruvica good or bad for you?

I just found this web and have had CLL for 5 years. I started Imbruvica about 2 years ago, and in the past 11 months have developed a rash that will appear...

I just found this web and have had CLL for 5 years. I started Imbruvica about 2...

pinkdeer

•7 years ago

10 Replies

Starting FCR on Monday

After lots of ups and downs, I am on the FLAIR trial and starting FCR on Monday. I’ve tapped into a wealth of advice here, but would welcome any pearls of...

After lots of ups and downs, I am on the FLAIR trial and starting FCR on Monday....

Mandy56

•7 years ago

21 Replies

35 year old with CLL

my 35 year old son was diagnosed with CLL in September. on watch and wait, though now lymph nodes are enlarging. Would like him to see a doctor that has...

my 35 year old son was diagnosed with CLL in September. on watch and wait, thou...

Kazzie12

•7 years ago

3 Replies

Lets get our message out there UK CLL'ers

There is some fantastic work going on at the moment highlighting #WatchWaitWorry campaign (check out twitter) from Leukaemia Care but the UK CLL community...

There is some fantastic work going on at the moment highlighting #WatchWaitWorry...

TAS50

•7 years ago

12 Replies

Finished my second opinion today

Good afternoon everyone. I had my Second option regarding MySll diagnosis at Sloan with Dr Mato. 1. Sloan was a great hospital regarding staff. 2. Once I...

Good afternoon everyone. I had my Second option regarding MySll diagnosis at Slo...

Ironj

•7 years ago

39 Replies

Off ibrutinib

I have been off ibrutinib for 6 weeks because of adverse reaction. I have recently re-started (2 weeks) and have an appointment with my hemo/oncologist next...

I have been off ibrutinib for 6 weeks because of adverse reaction. I have recen...

joycecanada

•7 years ago

17 Replies

Update

Husbands started on medication had one IVIG infusion so far, spent a week in the hospital last month for an infection that got out of hand very quickly, home...

Husbands started on medication had one IVIG infusion so far, spent a week in the...

Hidden

•7 years ago

5 Replies

Glen Sabin cure ?

Has anyone been in communication or have any knowledge on the Glen Sabin protocol which cured his CLL

Has anyone been in communication or have any knowledge on the Glen Sabin protoco...

Canuck901

•7 years ago

11 Replies

Interpreting lab results on Ibrutinib

What does it mean if you have been on Ibrutinib for 4 weeks, and your white blood count has gone up to 21,000 and lymphocytes are at 18.2!!! (Neutrophils are a...

What does it mean if you have been on Ibrutinib for 4 weeks, and your white bloo...

kathymac52

•7 years ago

4 Replies

Myelin Associated Glycoprotein (MAG) Antibody

Hello all, I have been on W&W for 8 years now, and my Dr. says that my CLL has been "indolent" in that my labs have been generally abnormal but stable. On my...

Hello all, I have been on W&W for 8 years now, and my Dr. says that my CLL has b...

LenfromSoCal

•7 years ago

15 Replies

CLL Lyrica cramps

Just wondering if anyone else has experienced this? I am on Imbruvica for CLL, plus Lyrica for pain. The Imbruvica has been brilliant. The downsides from...

Just wondering if anyone else has experienced this? I am on Imbruvica for CLL, p...

BSMI

•7 years ago

3 Replies

FISH question

What does it mean when, eg, the number, here 74%, goes down? to say 59%?

tedrog

•7 years ago

22 Replies

Diagnosed with Monoclonal B-cell lymphocytosis (MBL) and scared!

I'm 41 year old with a 6 year history of Chronic Nonallergic Rhinitis causing polyps. After months of Topical Sinus Therapy my polyps improved, I then had...

I'm 41 year old with a 6 year history of Chronic Nonallergic Rhinitis causing p...

Laura3mini

•7 years ago

33 Replies

Recommendation...chemo

Finally got my second opinion @ Moffitt. He agreed with my oncologist that chemo is recommended. His concern is the anemia. I was happy to see it went from 9.3...

Finally got my second opinion @ Moffitt. He agreed with my oncologist that chemo...

GMa27

•7 years ago

16 Replies

Good news- got approved for zarxio shots for entire year! Buh bye neutropenia!

Hooray finally something positive :) in addition my oncologist dr Fang just called said there is no transformed lymphoma still just SLL and waiting on the FISH...

Hooray finally something positive :) in addition my oncologist dr Fang just call...

Luckyliss

•7 years ago

16 Replies

EGCG , Chaga tea

Has anyone tried EGCG? What’s a great brand to buy ? I know the May clinic was using 2000mgs twice a day For 6 months In their trial . Also has anyone tried...

Has anyone tried EGCG? What’s a great brand to buy ? I know the May clinic was u...

Canuck901

•7 years ago

13 Replies

CLL Live conference

Does anyone know if there are any videos from the recent CLL Live conference that I could see since I was unable to go myself??

Does anyone know if there are any videos from the recent CLL Live conference tha...

jjaarons

•7 years ago

2 Replies

Dental

Living with CLL since 2005 but now needing some dentistry and seem to recall reading that metal fillings may not be good news for us CLL folks. Anyone any...

Living with CLL since 2005 but now needing some dentistry and seem to recall rea...

danum

•7 years ago

5 Replies

Altering Gut Microbiome May Increase Resistance to C. difficile infection

C. diff is a harmful bacterium that can cause severe, recurrent, and sometimes fatal infections in the gut. Although the bacteria are commonly found throughout...

C. diff is a harmful bacterium that can cause severe, recurrent, and sometimes f...

Cllcanada

Heart side effects from 3mo of Imbruvica

Hello, new to the site. I'm a CLL'er since 2011, age 60 and I've had 3 bouts. The most resent go to treatment Imbrivica 3mos ago. Started to feel ODD!...

Hello, new to the site. I'm a CLL'er since 2011, age 60 and I've had 3 bouts. Th...

SoCal5898

•7 years ago

17 Replies

Ventoclax

Hi I’m on ventoclax first week my white blood cells didn’t drop much, I’m feeling a bit depressed

Hi I’m on ventoclax first week my white blood cells didn’t drop much, I’m feelin...

581959

•7 years ago

8 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2018

Confirmation of bloods

First. FCR treatment

What is the difference between being unmutated and mutated? When people are discussing treatment, this seems to be very important.

trouble breathing

Information

Is anyone using essential oils to help with the treatment of CLL?

Post venetoclax fatigue

Improved telomerase mapping may aid development of anti-cancer drugs

Hello my name is Donna. 56 yrs old, CLL diagnosis 2002, started FCR in Jan.

Is Imbruvica good or bad for you?

Starting FCR on Monday

35 year old with CLL

Lets get our message out there UK CLL'ers

Finished my second opinion today

Off ibrutinib

Update

Glen Sabin cure ?

Interpreting lab results on Ibrutinib

Myelin Associated Glycoprotein (MAG) Antibody

CLL Lyrica cramps

FISH question

Diagnosed with Monoclonal B-cell lymphocytosis (MBL) and scared!

Recommendation...chemo

Good news- got approved for zarxio shots for entire year! Buh bye neutropenia!

EGCG , Chaga tea

CLL Live conference

Dental

Altering Gut Microbiome May Increase Resistance to C. difficile infection

Heart side effects from 3mo of Imbruvica

Ventoclax

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