Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for March 2018

MRD Negative in the bone Marrow for CLL / SLL after 15 Months on Imbruvica plus Venetoclax - Captivate trial.

Good News, After 15 Months on Imbruvica plus Venetoclax Captivate trial out of UC San Diego I am MRD Negative in the Bone Marrow and blood down to 1 in 10,000...

Good News, After 15 Months on Imbruvica plus Venetoclax Captivate trial out of ...

Hoffy

•6 years ago

33 Replies

Dr. Logan on ibrutinib and Venclexta (venetoclax) combo 'need to wait a year or two...'

https://youtu.be/I-B8iEiuu7Q

Cllcanada

Gone Neutropenic before Final FCR - ARGHHHH

Had my bloodwork done today in preparation for my final FCR treatments starting Monday. Drat - my neuts went to 0.4 (normal is 2.0 to 7.5) and WBC went down to...

Had my bloodwork done today in preparation for my final FCR treatments starting ...

Marie-54

•6 years ago

7 Replies

Want to take advantage of all our features? Just log in!

Turmeric is very useful.

You can have raw turmeric or organic turmeric powder daily. It is very good to resist infections.You can have this with milk or jaggery. You can have 2 cloves...

You can have raw turmeric or organic turmeric powder daily. It is very good to r...

Supratim

•6 years ago

4 Replies

CLL and pleural effusion

Any info on treatments that not only treat CLL but clear continued accumulation of fluid. I am not in end stage and CLL numbers are not that high- the main...

Any info on treatments that not only treat CLL but clear continued accumulation ...

Wanna2know

•6 years ago

9 Replies

Ibrutinib /Venetoclax Follow up

Hi my fellow CLLrs!! Well.. I just wanted to follow up with everyone and give those who are thinking about starting this trial an update on my experience so...

Hi my fellow CLLrs!! Well.. I just wanted to follow up with everyone and give t...

BCTexas

•6 years ago

38 Replies

BBC article on ageing and immune system

Today on the news and internet an article about how exercise keeps you fit as you age and how it helps the immune system. Something we could all do with sone...

Today on the news and internet an article about how exercise keeps you fit as yo...

Oleboyredw-uk

•6 years ago

19 Replies

Rituximab infusion 1 so far so good

Hi everyone just got back from hospital after my first infusion of Rituximab. All went well no hiccups thank goodness. Started Ibrutinib the day before. I know...

Hi everyone just got back from hospital after my first infusion of Rituximab. Al...

annmcgowan

•6 years ago

31 Replies

Low platlets

Hello...my husband husbands platlets have dropped from 132 to in 116 in a month..his GP refered him to a hemotoligist..this doctor looked at the report and...

Hello...my husband husbands platlets have dropped from 132 to in 116 in a month....

Shazz1958

•6 years ago

19 Replies

CLL at a age of 35

I also have been diagnosed with CLL at age of 35.Can anyone suggest any diet instructions. Thanks

I also have been diagnosed with CLL at age of 35.Can anyone suggest any diet ins...

Supratim

•6 years ago

10 Replies

Sinus surgery

I have the answer (finally) as to why I have been coughing all day and at night which keeps me awake relating to this 5 month long sinusitis and bronchitis!...

I have the answer (finally) as to why I have been coughing all day and at night ...

Ladydi49

•6 years ago

13 Replies

Is BM transplant becoming more popular?

Is BM transplant the standard care for treatment now? I have been reading more and more posts about people heading towards transplants...

Is BM transplant the standard care for treatment now? I have been reading more ...

Bchittineni

•6 years ago

12 Replies

CLL and sleep issues

Just wandering if anyone has had sleep issues with Ibrutinib. The medication will not allow me to sleep all night. I'll sleep about 2 hours and wake up. Seems...

Just wandering if anyone has had sleep issues with Ibrutinib. The medication wil...

Basicblack

•6 years ago

20 Replies

After Imbruvica

After a first round of FC made 8 years ago, now is time for treatment. My hematologist suggested Imbruvica.But if my CLL does not respond to that,what kind of...

After a first round of FC made 8 years ago, now is time for treatment. My hemato...

lilica955

•6 years ago

6 Replies

Such fear !

Just knowing that I have cancer in my lymph nodes, my bone marrrow and my blood (CLL) scares the fool out of me! That all over my body from head to toe! So...

Just knowing that I have cancer in my lymph nodes, my bone marrrow and my blood ...

Mimi4times

•6 years ago

37 Replies

Wife of CLL husband

My husband was diagnosed with CLL 7 years ago And went in remission after receiving chemo for six months The leukemia came back last year and now he is on the...

My husband was diagnosed with CLL 7 years ago And went in remission after receiv...

Marn1

•6 years ago

9 Replies

Enlarged spleen and Liver

I was diagnosed with enlarged spleen and liver. The spleen is 12.86cm and liver is 15cm .then my GP told me to get complete blood count test and liver function...

I was diagnosed with enlarged spleen and liver. The spleen is 12.86cm and liver ...

sndpoffcl1

•6 years ago

3 Replies

Ibrutrinib and itching

New here. Wondering if anyone has had any issues with ibrutrinib and itching. Particularly on the face - and mostly at night. I've been taking it for over a...

New here. Wondering if anyone has had any issues with ibrutrinib and itching. ...

Andreamo

•6 years ago

8 Replies

Compromised Immune System

Do any of you diagnosed with CLL find that any time you do get sick it takes longer to heal? I recently had the flu, then bronchitis and a sinus infection,...

Do any of you diagnosed with CLL find that any time you do get sick it takes lon...

Wendy328

•6 years ago

13 Replies

CLL SLL Support Group Meetings USA

For USA patients and caregivers that would like to meet others in person, the CLL Society has organized support group meetings in many major US cities, see:...

For USA patients and caregivers that would like to meet others in person, the CL...

lankisterguy

Volunteer•6 years ago

Be the first to reply

7 months post FCR and I’m back at A&E

Great. Raging temperature sees me back at A&E this morning. Lengthy wait ahead in all likelihood.... wish me luck

Great. Raging temperature sees me back at A&E this morning. Lengthy wait ahead i...

MattGGibson

•6 years ago

13 Replies

Don’t stand so close to me!

I want to now live in a bubble after this year’s flu! It’s now going on a month and I’m still coughing. Thanks to Tamiflu I avoided some of the misery....

I want to now live in a bubble after this year’s flu! It’s now going on a month ...

SunnyCA

•6 years ago

19 Replies

Tumeric, nausea and a racing heart

Hello all....I have been drinking one tea bag of Numi Organic Tumeric Tea daily and I have been taking a 500 mg capsule of tumeric daily. I have been having...

Hello all....I have been drinking one tea bag of Numi Organic Tumeric Tea daily ...

Ladydi49

•6 years ago

8 Replies

Irradiated blood

Does anyone know if someone in remission from CLL (MRD- after FCR) would still need irradiated blood in the event of an emergency transfusion? If so, whilst...

Does anyone know if someone in remission from CLL (MRD- after FCR) would still n...

Fowey2009

•6 years ago

25 Replies

Watch & wait with CLL

Hi I have posted on her before about my husband having being diagnosed with CLL back in July 2017 His bloods have always been perfect we found his CLL because...

Hi I have posted on her before about my husband having being diagnosed with CLL ...

trswarranty

•6 years ago

16 Replies

Autoimmune diseases caused by CLL: rheumatoid arthritis, and more importantly, erythromelalgia

Does anyone also have rheumatoid arthritis or erythromelalgia caused by CLL? Please email suggested doctors, your experiences, your treatments or medicines...

Does anyone also have rheumatoid arthritis or erythromelalgia caused by CLL? Ple...

SMS-not-cll

•6 years ago

1 Reply

Concerned about platelet count

Just wondering when platelets become a problem. Looking back at my November labs I was at 271. Last week after labs they were down to 152. Seems like a fast...

Just wondering when platelets become a problem. Looking back at my November labs...

Jmscruggs2323

•6 years ago

4 Replies

Major nausea

Was diagnosed with CLL in June 2017. I am in the Sit and Wait period and am on stage 2. My blood work is stable and cat scans but am feeling nausea a lot;...

Was diagnosed with CLL in June 2017. I am in the Sit and Wait period and am on ...

Mimi4times

•6 years ago

33 Replies

CLL with bad soar throat

Hi everyone, I would much appreciate your advice on my father's situation. He was diagnosed as CLL 2 years ago, currently he is at stage B and on W&W. He is...

Hi everyone, I would much appreciate your advice on my father's situation. He wa...

lonelyplan

•6 years ago

6 Replies

Ibrutinib Withdrawl Symptoms?

My husband has WM and finished a 6 month course of bendeka/rituxin in November. His IgM was down to 515 and was put on Ibrutinib 2 capsules a day for 1 week,...

My husband has WM and finished a 6 month course of bendeka/rituxin in November....

Hidden

•6 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2018

MRD Negative in the bone Marrow for CLL / SLL after 15 Months on Imbruvica plus Venetoclax - Captivate trial.

Dr. Logan on ibrutinib and Venclexta (venetoclax) combo 'need to wait a year or two...'

Gone Neutropenic before Final FCR - ARGHHHH

Turmeric is very useful.

CLL and pleural effusion

Ibrutinib /Venetoclax Follow up

BBC article on ageing and immune system

Rituximab infusion 1 so far so good

Low platlets

CLL at a age of 35

Sinus surgery

Is BM transplant becoming more popular?

CLL and sleep issues

After Imbruvica

Such fear !

Wife of CLL husband

Enlarged spleen and Liver

Ibrutrinib and itching

Compromised Immune System

CLL SLL Support Group Meetings USA

7 months post FCR and I’m back at A&E

Don’t stand so close to me!

Tumeric, nausea and a racing heart

Irradiated blood

Watch & wait with CLL

Autoimmune diseases caused by CLL: rheumatoid arthritis, and more importantly, erythromelalgia

Concerned about platelet count

Major nausea

CLL with bad soar throat

Ibrutinib Withdrawl Symptoms?

Search posts

Pinned Posts

Latest poll

Part 2 of How well do you know HealthUnlocked's features? Rate yourself on this multichoice poll. Answers later or you can check Help!

Topics

Archive