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CLL Support

22,532 members • 38,709 posts

All posts for June 2020

Side effects from Imbruvica

Hello, I’m on Imbruvica for almost 3 years. Have some side effects: UTI, palpitation in my heart, gain wait, broken nails ( not growing), noise in my head. Did...

Hello, I’m on Imbruvica for almost 3 years. Have some side effects: UTI, palpita...

farber

•4 years ago

26 Replies

Treatment options

Hi all, Asking on behalf of my husband. He’s been stage 4 cll for 2.5 years without any treatment yet, he’s 42 years old and in great shape/very active which...

Hi all, Asking on behalf of my husband. He’s been stage 4 cll for 2.5 years with...

Chewy5

•4 years ago

36 Replies

Ibrutinib and botox

Does anyone know if it is allowed having Botox while using ibrutinib? Does it have any side effects?

Does anyone know if it is allowed having Botox while using ibrutinib? Does it h...

Cllriri

•4 years ago

5 Replies

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Change of treatment

Thank you so much for your response. WBC was 116 but platelets had dropped to 32. This prompted change in treatment to Obinituzimab and later transition to...

Thank you so much for your response. WBC was 116 but platelets had dropped to 3...

doris33

•4 years ago

17 Replies

Side effects of Venetoclax

Thank you for your response. What kind of side effects have been experienced on Venetoclax?

Thank you for your response. What kind of side effects have been experienced on...

doris33

•4 years ago

50 Replies

Acalabrutinib and Cirtus Fruit

The Acalabrutinib data sheet states that one should avoid grapefruit and Seville oranges. Does that mean that orange juice from concentrate which may be from...

The Acalabrutinib data sheet states that one should avoid grapefruit and Sevill...

SERVrider

•4 years ago

13 Replies

Chicken link to blood cancer

I am putting my head over the parapet and posting this. In the past when I’ve posted about food related matters, there has been some negative, and even...

I am putting my head over the parapet and posting this. In the past when I’ve po...

Mandy56

•4 years ago

14 Replies

Peripheral MDA

My Dr. doesnt think I really need a BMB to see if I am MRD negative. I finished my treatment of gazyva and veneteclax in May. What is the name of the test...

My Dr. doesnt think I really need a BMB to see if I am MRD negative. I finished...

Downriver555

•4 years ago

27 Replies

Changing treatment

Could not take full dose of Ibrutinib because of side effects. Switched to Acalabrutinib but disease not controlled. Now taking obenituzimab to lower white...

Could not take full dose of Ibrutinib because of side effects. Switched to Acal...

doris33

•4 years ago

19 Replies

NHS Antibody HOME Test Process

Can anyone advise on the specific process for the NHS Antibody HOME Test? I know that you go online complete your name and mobile number, but what happens...

Can anyone advise on the specific process for the NHS Antibody HOME Test? I kno...

RobertCLL

•4 years ago

6 Replies

Interesting article on treatment choices

https://www.curetoday.com/cure-tv/what-factors-play-a-role-in-determining-optimal-first-line-treatment-for-patients-with-cll. I found this an interesting...

https://www.curetoday.com/cure-tv/what-factors-play-a-role-in-determining-optima...

Research123

•4 years ago

23 Replies

Having MCL and CLL/Trial question

Previously I asked if anyone had MCL and CLL. All replies said that is very rare. Well I found out I only have indolent MCL. Thank you everyone who...

Previously I asked if anyone had MCL and CLL. All replies said that is very rar...

Conehead

•4 years ago

14 Replies

Webinar on CLL treatment - a Changing Landscape

CLL treatment - a changing landscape When: Jun 29, 2020 11:00 AM You are invited to join us for a webinar by our sister charity Leukaemia Care on...

CLL treatment - a changing landscape When: Jun 29, 2020 11:00 AM You are invi...

Jm954

Administrator•4 years ago

12 Replies

Survey on the Effects of Shielding

Blood Cancer UK are conducting a survey on how the blood cancer community is coping with shielding. It would help them greatly if you could complete it.......

Blood Cancer UK are conducting a survey on how the blood cancer community is cop...

Davdow

•4 years ago

10 Replies

Government Shielding Letter

Arrived yesterday, letter from DoH outlining the key points of the revised shielding advice from the 6 July and 1st August. Got to say that the letter arrived...

Arrived yesterday, letter from DoH outlining the key points of the revised shiel...

RobertCLL

•4 years ago

6 Replies

24th June Update

A very unsatisfactory call from team at Christie’s. No information imparted because it was not deemed appropriate subject matter for a telephone conversation....

A very unsatisfactory call from team at Christie’s. No information imparted beca...

Sepsur

•4 years ago

91 Replies

Out of remission

I had Rituxan/Bendeka treatment through a port about 18 months ago. It worked really well and I have been in remission for about a year or so. I’m currently...

I had Rituxan/Bendeka treatment through a port about 18 months ago. It worked re...

J-girl

•4 years ago

5 Replies

Joint Pain

I was on Imbruvica for 6 months and started having joint pain. My Dr switched me to Calquence to see if I would get any relief. Joint pain continues. It is...

I was on Imbruvica for 6 months and started having joint pain. My Dr switched me...

Wahoowa

•4 years ago

15 Replies

Epstein-Barr virus

I was wondering if anyone can give me any insight to the Epstein-Barr virus with CLL, and if anyone has had issues with this. Thank you in advance.

I was wondering if anyone can give me any insight to the Epstein-Barr virus with...

Mommeekins

•4 years ago

11 Replies

Walking By Faith Not By Sight

I’m a 34 yr old woman, diagnosed July 2018 with CLL 17P Del, unmutated. Initial shock, fear and anxiety of the waiting for results nearly killed me! I’m sure...

I’m a 34 yr old woman, diagnosed July 2018 with CLL 17P Del, unmutated. Initial ...

Danid18

•4 years ago

9 Replies

Just found this site

Was diagnosed with CLL May 5 2020 after a routine blood check.Just learning to cope with watch/wait something im not used to but am coping most of the...

Was diagnosed with CLL May 5 2020 after a routine blood check.Just learning to c...

podris

•4 years ago

29 Replies

Hope for Spread of CLL to Central Nervous System

My CLL spread to my central nervous system three years ago. It caused lesions behind my retinas and on my brain lining, which in turn caused blindness and...

My CLL spread to my central nervous system three years ago. It caused lesions b...

Eagle5327

•4 years ago

21 Replies

QUESTION? Ive been seeing alot of talk on here about SHEILDING..BUT WHAT IS IT?

JUST CURIOUS?

kollock93

•4 years ago

5 Replies

Time from the first cancer cell to first symptoms?

Most of us learnt about CLL suspicion after a blood check which showed elevated white blood cell counts. It was also the case with me: in September 2019, my...

Most of us learnt about CLL suspicion after a blood check which showed elevated ...

mantana

•4 years ago

5 Replies

11.30 today join the Welsh experts to discuss shielding in Wales

Good Morning all 🔴 Today we are hosting a Wales leukaemia patients' shielding update and Q&A at 11:30am. Welsh patients and experts will discuss shielding in...

Good Morning all 🔴 Today we are hosting a Wales leukaemia patients' shielding u...

HAIRBEAR_UK

Founder Admin•4 years ago

1 Reply

Good evening! My father was diagnosed 9 months ago. Treatment(obinutuzumab)& such has been taking its course.

I was hoping if anyone can guide/advise me in regards to his irregular blood sugars (while still in treatment). Existing type 2 DM. Controlled diet + exercise,...

I was hoping if anyone can guide/advise me in regards to his irregular blood sug...

anbazdaya

•4 years ago

1 Reply

Encouraging article on Calquence (acalabrutinib)

https://www.survivornet.com/articles/how-is-calquence-used-for-chronic-lymphocytic-leukemia/

https://www.survivornet.com/articles/how-is-calquence-used-for-chronic-lymphocyt...

Research123

•4 years ago

3 Replies

Telephone consultation

Good afternoon. Had my call from Dr Munro and mostly good news in that my bloods are not showing too much change. There is a little more anaemia and a slight...

Good afternoon. Had my call from Dr Munro and mostly good news in that my bloods...

kitchengardener2

•4 years ago

13 Replies

Stage lengths?

Curious to know if there is any scientific studies showing roughly how long each stage lasts? I recognize that there are many factors involved (age, general...

Curious to know if there is any scientific studies showing roughly how long each...

Skydon

•4 years ago

5 Replies

Update on shielding

Hello everyone.. Has anyone heard anything official or had any conversations with Thier consultants or GP , regarding the end date regarding shielding. I'm...

Hello everyone.. Has anyone heard anything official or had any conversations wit...

mfc86

•4 years ago

40 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2020

Side effects from Imbruvica

Treatment options

Ibrutinib and botox

Change of treatment

Side effects of Venetoclax

Acalabrutinib and Cirtus Fruit

Chicken link to blood cancer

Peripheral MDA

Changing treatment

NHS Antibody HOME Test Process

Interesting article on treatment choices

Having MCL and CLL/Trial question

Webinar on CLL treatment - a Changing Landscape

Survey on the Effects of Shielding

Government Shielding Letter

24th June Update

Out of remission

Joint Pain

Epstein-Barr virus

Walking By Faith Not By Sight

Just found this site

Hope for Spread of CLL to Central Nervous System

QUESTION? Ive been seeing alot of talk on here about SHEILDING..BUT WHAT IS IT?

Time from the first cancer cell to first symptoms?

11.30 today join the Welsh experts to discuss shielding in Wales

Good evening! My father was diagnosed 9 months ago. Treatment(obinutuzumab)& such has been taking its course.

Encouraging article on Calquence (acalabrutinib)

Telephone consultation

Stage lengths?

Update on shielding

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