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CLL Support

23,141 members • 39,745 posts

All posts for July 2018

Concern about another cancer

On trial of Ibrutinib and venetoclax for 3 months. Very concerned because I got called to have a diagnostic mammogram and ultrasound after my routine...

On trial of Ibrutinib and venetoclax for 3 months. Very concerned because I got...

Ninagram

•6 years ago

7 Replies

British 10k - what a blast

Great to meet others running for the CLLSA yesterday in the heat of London. Well done everyone!

Great to meet others running for the CLLSA yesterday in the heat of London. Well...

MattGGibson

•6 years ago

21 Replies

Spots along spine CLL

Hi. I’m new here :). My sister was diagnosed with CLL a year and a half ago at age 34. She hasn’t had any noticeable symptoms except some fatigue, but her wbc...

Hi. I’m new here :). My sister was diagnosed with CLL a year and a half ago at ...

Efig

•6 years ago

21 Replies

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New 17P- w questions about EGCG and normal 2nd 17th chromosome

Hello, Thank you all for your insightful posts and support! I'm relatively new to this forum- diagnosed in April 2018 with 17P- CLL on abnormal bloodwork....

Hello, Thank you all for your insightful posts and support! I'm relatively new t...

TJG_CLL17P-

•6 years ago

36 Replies

Last post

Sorry if anyone was offended by my last post - certainly not my intention - Peace & love from Crete

Sorry if anyone was offended by my last post - certainly not my intention - Pea...

Sepsur

•6 years ago

3 Replies

Could this be autoimmune hemolytic anemia extreme drop in hemoglobin 3 weeks after bendamustine/Rituxan

After round of bendamustine/Rituxan after 2 year remission from Gazyva/clorambucil hemoglobin dropped from 10.6 to 7.5 in one week. Blood transfusion dropped...

After round of bendamustine/Rituxan after 2 year remission from Gazyva/clorambuc...

Hidden

•6 years ago

11 Replies

First posting.

I'm 74. Have cll for 4 years, just had tests yesterday and in last 3 months my wbc went from 80,000 to 120,000. Doc at stanford has been waiting watching. I...

I'm 74. Have cll for 4 years, just had tests yesterday and in last 3 months my w...

Chemong

•6 years ago

7 Replies

Marked improvement

Has anyone else had a marked improvement in hgb and platelets in a month period without treatment? My numbers trending downward for 3 years but most recent...

Has anyone else had a marked improvement in hgb and platelets in a month period ...

MonD

•6 years ago

8 Replies

M spike

Can anyone explain what it means when "m spike not detected". Thank you!

MonD

•6 years ago

3 Replies

CLLSA London meeting 8 November 2018

A date for your diary in the uk - The next London meeting will be on the 8 th November 2018. More details will be made available when registration opens near...

A date for your diary in the uk - The next London meeting will be on the 8 th No...

Myrddin

•6 years ago

1 Reply

First Hematology/Oncology Appointment

This is my second post since being diagnosed and joining this community on July 2nd. I am so glad to have found this community! I have my first appointment...

This is my second post since being diagnosed and joining this community on July ...

mphillif

•6 years ago

11 Replies

Severe rash spread all over my back and shoulders

Has anyone else experienced this, two days ago my back started itching and then the rash grew and spread all over and creating over my shoulders, it is covered...

Has anyone else experienced this, two days ago my back started itching and then ...

Heidiypi1

•6 years ago

10 Replies

Financial help from LLS for US patients

Hi, Got this today from friends at LLS These funds open and close quickly at time, so if you qualify and have the need, move fast. This is for Medicare and...

Hi, Got this today from friends at LLS These funds open and close quickly at tim...

bkoffman

CLL CURE Hero•6 years ago

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Any suggestions

I have just returned from hosp with the news that treatment should begin. I have two choices the conventional fcr treatment or the Flair trial which may still...

I have just returned from hosp with the news that treatment should begin. I have...

dandelup

•6 years ago

40 Replies

NHSE Response to CLLSA Freedom of Information Request regarding restriction of Ibrutinib (not following NICE guidance)

Dear Mr Innes, (Chair of CLLSA) Re: Freedom of Information Request (Our reference FOI-05*****) We are writing with regard to your Freedom of...

Dear Mr Innes, (Chair of CLLSA) Re: Freedom of Information Request (Our refer...

Jm954

Administrator•6 years ago

21 Replies

love life ..

hi I was diagnosed in 1998 after several bad chest infections.... which have never gone away. it was a shock as I was only 43 but my doctor recommended W and...

hi I was diagnosed in 1998 after several bad chest infections.... which have nev...

mrsmaxie

•6 years ago

8 Replies

Dr. Wiestner on Combos and fixed duration ibrutinib (he doesn't like the idea) and a webinar with Dr. Byrd and me

Hi everyone, Dr. Wiestner always has a fresh perspective on CLL treatment, and my interview at ASH was no exception. I+V in the CAPTIVATE trial is looking...

Hi everyone, Dr. Wiestner always has a fresh perspective on CLL treatment, and m...

bkoffman

CLL CURE Hero•6 years ago

5 Replies

Cold medication

Hi guys my hubby currently having FCR for CLL he seems to be taking the cold does anyone know what cold medication he could take if any ???

Hi guys my hubby currently having FCR for CLL he seems to be taking the cold doe...

Sailormoon11

•6 years ago

7 Replies

Cll update

I haven't been on here for sometime as my dad was diagnosed in april with prostate cancer but my husband has recently been for his appointment for cll and...

I haven't been on here for sometime as my dad was diagnosed in april with prosta...

Nikkij81

•6 years ago

5 Replies

EGCG for CLL?

Has anyone tried contacting mayo clinic about how to get a pharmaceutical grade of EGCG that they used in their trials ? Looks like EGCG kills CLL cells.

Has anyone tried contacting mayo clinic about how to get a pharmaceutical grade ...

Canuck901

•6 years ago

20 Replies

Irish site

Tanks feeling great again I had a link to an Irish site but lost it any one now it please

Tanks feeling great again I had a link to an Irish site but lost it any one now ...

Mobilehome

•6 years ago

4 Replies

Bone barrow biopsy in cml

I am describing my fathers report below can anyone tell me what that mean Microscopic Description: Bone marrow biopsy : Hypercellular bone marrow showing...

I am describing my fathers report below can anyone tell me what that mean Micros...

sumit-dubey

•6 years ago

2 Replies

One Million CLL Society Website Page-views! CLL Society in person support groups

Dear Friends and Supporters of the CLL Society, On July 2nd the CLL Society website surpassed 1 million page-views. You searched. We delivered. Thank you for...

Dear Friends and Supporters of the CLL Society, On July 2nd the CLL Society we...

lankisterguy

Volunteer•6 years ago

2 Replies

Lymphocyte count post FCR

Three years ago my husband had FCR which was very effective and he became MRD- (ie complete remission). Everything has been going very well and he is feeling...

Three years ago my husband had FCR which was very effective and he became MRD- ...

Fowey2009

•6 years ago

2 Replies

Blood Orange and Ibrutinib

Hi everyone. I have bought some Tea bags that you infuse in cold water. One of the ingredients is natural blood orange flavouring. Do you think these are ok to...

Hi everyone. I have bought some Tea bags that you infuse in cold water. One of t...

Cindy1462

•6 years ago

9 Replies

At what point in CLL am I supposed to have reduced immune function?

As you can tell, I am new to this board. I was Dx in May 2018. From older blood tests obtained from my internist (who is about to be history!), it seems that...

As you can tell, I am new to this board. I was Dx in May 2018. From older bloo...

Jonquiljo

•6 years ago

22 Replies

First Hospital appointment

Hi everyone I’m new to the group but have taken comfort in reading your posts. My mum has been diagnosed with Cll through a routine blood test at the GP’s and...

Hi everyone I’m new to the group but have taken comfort in reading your posts. M...

ForeverHope

•6 years ago

5 Replies

Bendeka, a fast infusion form of bendamustine, gets 7 year exclusivity in U.S.

Eagle Pharmaceuticals announced today that the U.S. FDA has granted seven years of orphan drug exclusivity (ODE) in the U.S., for Bendeka (bendamustine...

Eagle Pharmaceuticals announced today that the U.S. FDA has granted seven years ...

Cllcanada

New to site feeling light headed

Hello, I am new here. I was diagnosed in August 2015 with cll. I'm 56 years old. Glad I found this site it helps me alot to deal with it. I noticed lately my...

Hello, I am new here. I was diagnosed in August 2015 with cll. I'm 56 years old....

Cas61

•6 years ago

7 Replies

Low platelets

Hello all. My father's last two blood tests showed low platelets and now his lymphocytes are at 75.5%. He hasn't seen the dr yet because we are on vacation. He...

Hello all. My father's last two blood tests showed low platelets and now his lym...

stmdonofrio

•6 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2018

Concern about another cancer

British 10k - what a blast

Spots along spine CLL

New 17P- w questions about EGCG and normal 2nd 17th chromosome

Last post

Could this be autoimmune hemolytic anemia extreme drop in hemoglobin 3 weeks after bendamustine/Rituxan

First posting.

Marked improvement

M spike

CLLSA London meeting 8 November 2018

First Hematology/Oncology Appointment

Severe rash spread all over my back and shoulders

Financial help from LLS for US patients

Any suggestions

NHSE Response to CLLSA Freedom of Information Request regarding restriction of Ibrutinib (not following NICE guidance)

love life ..

Dr. Wiestner on Combos and fixed duration ibrutinib (he doesn't like the idea) and a webinar with Dr. Byrd and me

Cold medication

Cll update

EGCG for CLL?

Irish site

Bone barrow biopsy in cml

One Million CLL Society Website Page-views! CLL Society in person support groups

Lymphocyte count post FCR

Blood Orange and Ibrutinib

At what point in CLL am I supposed to have reduced immune function?

First Hospital appointment

Bendeka, a fast infusion form of bendamustine, gets 7 year exclusivity in U.S.

New to site feeling light headed

Low platelets

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