Posts - CLL Support | HealthUnlocked

CLL Support

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All posts for May 2020

Dr.Increased ibrutinib to 560 a week ago. have started losing weight without trying(5 Pounds) Any thoughts?

Weight loss

aberk

•4 years ago

9 Replies

ibrutinib resistance testing

Can please somebody tell me the name of the test that confirms actual resistance to Ibrutinib? I could not find it. Thanks in advance

Can please somebody tell me the name of the test that confirms actual resistance...

Marymary19

•4 years ago

26 Replies

Thank you - received good news

Hi all, I recently celebrated my 50th birthday then went in for my bloods (I gave it a week) Roughly two years ago I was tested and my lymphocyte count had...

Hi all, I recently celebrated my 50th birthday then went in for my bloods (I ga...

Billy_Oz

•4 years ago

5 Replies

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Imbruvica side effects

I started 420mg Imbruvica June of 2019 and lasted 2 months because of bad side effects. Dr lowered to 280mg Oct 2019 and lasted 7 months, with some side...

I started 420mg Imbruvica June of 2019 and lasted 2 months because of bad side e...

brooklyn7672

•4 years ago

5 Replies

Foot Problems Related to CLL

For the past several months I have had some problem with infection in my right foot which was initially cellulitis anand then viewed to be a super-infection...

For the past several months I have had some problem with infection in my right f...

KevinCLLITP

•4 years ago

3 Replies

Ibrutinib is not working any more

Hello everybody, my mom has been taking 3 capsules Ibrutinib a day since June 2018. After a few months the neutrophils dropped and according to the doctor this...

Hello everybody, my mom has been taking 3 capsules Ibrutinib a day since June 20...

Marymary19

•4 years ago

10 Replies

Testosterone

I have meant to post something I learned a number of months ago, but I forgot to do so. On a visit to my Endocrinologist, who I only go to because almost ten...

I have meant to post something I learned a number of months ago, but I forgot to...

wizzard166

•4 years ago

12 Replies

GOV.CO.UK LATEST SHIELDING ADVICE

The government website advice page has now been updated 29/05/20 . Advised date for those of us shielding and vulnerable has not changed and is still 30/06/20...

The government website advice page has now been updated 29/05/20 . Advised date...

dmtm2005

•4 years ago

28 Replies

What is coming after shielding

Hi everyone, I been told to stay home and shield until end of June because of CLL and other health problems, but never once had I received any advice what I...

Hi everyone, I been told to stay home and shield until end of June because of CL...

Deniz2012

•4 years ago

9 Replies

Lymphocytes are at 26%

What does it mean if the Lymphocytes are at 26%? I'm on Ibrutinib and Venetoclax.

What does it mean if the Lymphocytes are at 26%? I'm on Ibrutinib and Venetocla...

Pinhead1

•4 years ago

5 Replies

Need help to be able to support my husband and my family

Hi I am new here and trying to fin out how can help my husband to deal with CLL. He had his bon marrow biopsy and the doctor is trying to confirm if he has cll...

Hi I am new here and trying to fin out how can help my husband to deal with CLL....

FM1116

•4 years ago

41 Replies

Just had my next appointment postponed

Hi, I just had my next appointment postponed from June until November, meaning 8 months between appointments - and it's a telephone one (on the NHS in UK)....

Hi, I just had my next appointment postponed from June until November, meaning 8...

Research123

•4 years ago

9 Replies

CLL life prognosis

Hi. I would like to ask you what is the prognosis for life of a poor prognosis Chronic Lymphocytic Leukemia. The doctors never informed me that I had a bad...

Hi. I would like to ask you what is the prognosis for life of a poor prognosis C...

Priss69

•4 years ago

19 Replies

Ibrutinib and A-fib

I was doing well on Ibrutinib, lumps in neck almost disappeared within days of starting Ibrutinib. Afib got a lot worse and then chest pain that I’d never...

I was doing well on Ibrutinib, lumps in neck almost disappeared within days of s...

Abc123qaz

•4 years ago

11 Replies

Back to some kind of normal

Just been to afternoon tea at a cafe with my blood cancer group- well, the nine of us who felt comfortable enough to venture out. Starting to feel like we are...

Just been to afternoon tea at a cafe with my blood cancer group- well, the nine ...

Kiwidi

•4 years ago

5 Replies

Cancelled Bloods

Hi all, I am currently on Watch and Wait, having been diagnosed with CLL in June 2018. I was recently contacted by my haemotologist, (number three,) and...

Hi all, I am currently on Watch and Wait, having been diagnosed with CLL in Jun...

Vindicatrix

•4 years ago

4 Replies

Shielding advice by UK GOVERNMENT

Hi,has anyone seen the Shielding article in the Guardian newspaper regarding texts that have been sent out by UK GOVERNMENT,telling people with Cancer, Asthma...

Hi,has anyone seen the Shielding article in the Guardian newspaper regarding tex...

Nickos66

•4 years ago

17 Replies

Ibrutinib Protective against COVID-10 Pulmonary Damage?

I just heard about this today at a forum. A very small convenience sample study of 6 Waldenstrom's patients at Dana-Farber/Brigham & Women's hospital who were...

I just heard about this today at a forum. A very small convenience sample study ...

Lily_Pad_Master

•4 years ago

6 Replies

ANC is zero

My ANC went from 2.1 May 15 to .2 last Friday. Tested again today and it is zero. I'm on imbruvica and have rituxan infusions 1x per month. They wouldn't...

My ANC went from 2.1 May 15 to .2 last Friday. Tested again today and it is zer...

yellowgreentc

•4 years ago

11 Replies

Ibutrinib plus venetoclax?

As I told you my brother is in the rump up with venetoclax. Now he is in 100 mg now. This month he start relapsing his treatment with imbruvica monotherapy....

As I told you my brother is in the rump up with venetoclax. Now he is in 100 mg ...

Cgr2018

•4 years ago

12 Replies

CLL and Reumatoid Athuritis

I have been on Imbruvica for six months. My joints are really starting to ache and stiffen. My shoulders, hips, back and hands. Is there any relationship...

I have been on Imbruvica for six months. My joints are really starting to ache ...

Wahoowa

•4 years ago

6 Replies

Ibrutinib and Rivaroxaban

Hi, into my seventh week of Ibrutinib when I experienced chest pain on exertion also A-fib happening more frequently. Ended up in CCU in local hospital. Had an...

Hi, into my seventh week of Ibrutinib when I experienced chest pain on exertion ...

Abc123qaz

•4 years ago

3 Replies

Venetoclax, acalabrutnib, obitunzimab

Good morning all! Hope you are all doing well today. I’ve been reading a lot, but not posted much, so hear it goes! I have b en struggling with fatigue for...

Good morning all! Hope you are all doing well today. I’ve been reading a lot, b...

Tton46

•4 years ago

48 Replies

Unmutated patients on venetoclax?

I just watched the video "Evolving Front-Line Therapy in Chronic Lymphocytic Leukemia" posted by EugeneL2. In it, she refers to the trial where patients on...

I just watched the video "Evolving Front-Line Therapy in Chronic Lymphocytic Leu...

HikerBiker

•4 years ago

11 Replies

Hear Heartbeat in Ear

I have CLL, been taking Imbruvica since November of 2018. WBC down to 40,000 from 247,000, just recently started hearing heartbeat in right ear when laying...

I have CLL, been taking Imbruvica since November of 2018. WBC down to 40,000 f...

Die-Hard

•4 years ago

18 Replies

Nail issues

So have received some info from our health insurance that they will cover in house foot care indefinitely and going to a clinic very limited. OK that makes no...

So have received some info from our health insurance that they will cover in hou...

Imbub

•4 years ago

7 Replies

lymph nodes

I`m new here, with low grade CLL diagnosed in July2019.Generally well and on Watch and Wait so was surprised to get Govt letter dated April saying to stay at...

I`m new here, with low grade CLL diagnosed in July2019.Generally well and on Wat...

Skyblues

•4 years ago

8 Replies

Current best CLL treatment?

I noticed my platelets have steadily been going down. I had been on Ibrutinib for almost 2 years than off all medication for 2 years. If I have to go back on...

I noticed my platelets have steadily been going down. I had been on Ibrutinib fo...

barger1951

•4 years ago

39 Replies

How long does Neupogen effects like fever go away?

My brother had 3 shots of neopogen on Monday, Tuesday and Wednesday this week, and he has fever, no more than 38 for 3 days. He takes paracetamol and the fever...

My brother had 3 shots of neopogen on Monday, Tuesday and Wednesday this week, a...

Cgr2018

•4 years ago

1 Reply

Coronavirus spreading from surfaces is not the main way we can become infected. Plus shopping tips to keep you safe at the supermarket

The US Centers for Disease Control has recently updated their How COVID spreads information, noting:- The virus spreads easily between people...

The US Centers for Disease Control has recently updated their How COVID spreads ...

AussieNeil

Administrator•4 years ago

35 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2020

Dr.Increased ibrutinib to 560 a week ago. have started losing weight without trying(5 Pounds) Any thoughts?

ibrutinib resistance testing

Thank you - received good news

Imbruvica side effects

Foot Problems Related to CLL

Ibrutinib is not working any more

Testosterone

GOV.CO.UK LATEST SHIELDING ADVICE

What is coming after shielding

Lymphocytes are at 26%

Need help to be able to support my husband and my family

Just had my next appointment postponed

CLL life prognosis

Ibrutinib and A-fib

Back to some kind of normal

Cancelled Bloods

Shielding advice by UK GOVERNMENT

Ibrutinib Protective against COVID-10 Pulmonary Damage?

ANC is zero

Ibutrinib plus venetoclax?

CLL and Reumatoid Athuritis

Ibrutinib and Rivaroxaban

Venetoclax, acalabrutnib, obitunzimab

Unmutated patients on venetoclax?

Hear Heartbeat in Ear

Nail issues

lymph nodes

Current best CLL treatment?

How long does Neupogen effects like fever go away?

Coronavirus spreading from surfaces is not the main way we can become infected. Plus shopping tips to keep you safe at the supermarket

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