Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for July 2023

Zinc supplement?

Does anyone know anything about zinc and CLL? My zinc levels are low and I wondered if this is generally a presentation associated with CLL. I’ve tried to do...

Does anyone know anything about zinc and CLL? My zinc levels are low and I wonde...

Thursday45

•10 months ago

2 Replies

Further evidence that even moderate exercise is good for your long term health - particularly when you have CLL!

I've often observed that our immediate response when we are diagnosed with CLL, is to re-evaluate our diet (good) and look at how we can extend our time before...

I've often observed that our immediate response when we are diagnosed with CLL, ...

AussieNeil

Administrator•10 months ago

27 Replies

Holding Acalabrutinib for procedures, etc.

Hi all, I read you all here daily and am so impressed and appreciative for all of your collective knowledge! I’ve been on Acalabrutinib for 3+ mos and doing...

Hi all, I read you all here daily and am so impressed and appreciative for all o...

Islandjewel23

•10 months ago

5 Replies

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Your cancer treatment record

Just before my o&v treatment commenced I was given ‘your cancer treatment record’ a little blue book, supplied by cancer research uk, as a place to jot...

Just before my o&v treatment commenced I was given ‘your cancer treatment record...

Livingwith67

•10 months ago

2 Replies

Dietary Interventions and CLL - a case report

For those of you who are interested in dietary changes and CLL, I found an interesting clinical case report called "Stable improvement in classical B‐cell...

For those of you who are interested in dietary changes and CLL, I found an inter...

Minou1

•10 months ago

14 Replies

I don’t know what to expect or do 🤦🏽‍♀️

I am 9 weeks on Acalabrutinib 1/2 dose. My starting labs 4/17/23; Hgb 10.8, Plts 76,WBC 81 & ALC 78 & today 7/17/23; Hgb 11.2, Plts 72 (max 118 -> lowest 40),...

I am 9 weeks on Acalabrutinib 1/2 dose. My starting labs 4/17/23; Hgb 10.8, Plts...

CoachVera55

•10 months ago

8 Replies

Why is CLL mainly a disease of older people?

I am 72 and was diagnosed with CLL when I was 68. Almost everyone who gets CLL is in the upper sixties or older. Why do you think that CLL is an...

I am 72 and was diagnosed with CLL when I was 68. Almost everyone who gets CLL ...

HowardR

•10 months ago

70 Replies

My Radio Humberside piece

Understand it's possible to ask Alexa or other smart speakers to find Radio Humberside. On now

Understand it's possible to ask Alexa or other smart speakers to find Radio Humb...

kitchengardener2

•10 months ago

2 Replies

CLL Ireland Patient and Carer Day

Exciting news! CLL Ireland is delighted to open registration for our upcoming in-person patient and carer information day.Be sure to register early as spaces...

Exciting news! CLL Ireland is delighted to open registration for our upcoming in...

Irishcll

•10 months ago

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windemere

What is the average length of time ibrutinib is effective for CLL I have been on it for 5 years.

What is the average length of time ibrutinib is effective for CLL I have been on...

Windemere

•10 months ago

4 Replies

Exercisedduring and after Cancer Treatment,

Hi All, I may have mentioned this subject before, but I would like to pass it by you all again if I may. I have been on W&W for 5 years and am about to begin...

Hi All, I may have mentioned this subject before, but I would like to pass it by...

Vindicatrix

•10 months ago

40 Replies

Repeat MRI

I had a repeat MRI on Thursday to check if the two lesions after my TIA’s had disappeared. Good news is they have disappeared and there no sign of infarcts,...

I had a repeat MRI on Thursday to check if the two lesions after my TIA’s had d...

Alex830

•10 months ago

2 Replies

Gyny problems

I have recently had a pessary inserted for prolapse. I have incontinence due to a car accident several years ago when I was on my back for 2 months with a...

I have recently had a pessary inserted for prolapse. I have incontinence due to...

Magenta51

•10 months ago

6 Replies

Haemophilus Influenzae

I'm looking for input from anyone on our site who might have had trouble with the organism Haemophilus Influenzae; or, anyone who is otherwise knowledgeable...

I'm looking for input from anyone on our site who might have had trouble with th...

wizzard166

•10 months ago

7 Replies

CLL and Bells Palsy.

Hi all, I am presently being transferred to my new local Hematology team, and last Monday I was diagnosed with Bells Palsy. does anyone have any info on any...

Hi all, I am presently being transferred to my new local Hematology team, and la...

Vindicatrix

•10 months ago

7 Replies

CLL treatment for commobidities

My husband was diagnosed with CLL in January 2020, he has remained on W&W since then, he does however take meds for hypertension and high cholesterol, if when...

My husband was diagnosed with CLL in January 2020, he has remained on W&W since ...

TobyHolly01

•10 months ago

5 Replies

Flecanide or Propafenone when on ALCALABRUTINIB

Last year, I changed Ibrutinib for Alcalabrutinib because of elevated blood pressure and heart rate. For 6 months with Acalabrutinib + Bisoprolol5mg...

Last year, I changed Ibrutinib for Alcalabrutinib because of elevated blood pres...

unairdefamille

•10 months ago

1 Reply

Supplements and Running

I am at the "watch and worry" stage of CLL and I have been studying the literature in order to discover life-style changes (daily running helps) and...

I am at the "watch and worry" stage of CLL and I have been studying the literatu...

HowardR

•10 months ago

23 Replies

Back and joint pains .

Hi all Just wondering if any one on O& V treatment suffering from back pain and joints 🤔. Is it normal?.

Hi all Just wondering if any one on O& V treatment suffering from back pain and...

Stavrou1

•10 months ago

5 Replies

diagnosed march 55yr old

Been diagnosed 4 month and thought my whole life would change, but it hasn’t still exactly the same, wouldn’t say I’ve come to terms with it, I’m pretty calm...

Been diagnosed 4 month and thought my whole life would change, but it hasn’t sti...

Dexi67

•10 months ago

6 Replies

Botox

hello! Has anyone applied botox for cosmetic purposes? I have CLL and I am being treated with Ibrutinib. what experience have you had? thank you

hello! Has anyone applied botox for cosmetic purposes? I have CLL and I am bei...

Bixilon

•10 months ago

2 Replies

Acalabrutinib and Surgery

Due for keyhole hernia repair next week. Have been on Acalabrutinib for past 6 months seems to be working ok. Have previous BR treatment 4 years ago.My hemo...

Due for keyhole hernia repair next week. Have been on Acalabrutinib for past 6 m...

Joffre1

•10 months ago

8 Replies

Six monthly

Had my 3 monthly today, and talking to my consultant he said my lymphocytes are now up to 5 , whatever that is been on ibrutinib 6.5 years have lost weight...

Had my 3 monthly today, and talking to my consultant he said my lymphocytes are ...

cartwheels

•10 months ago

2 Replies

mrs J.

diagnosed about 8 years ago dormant til 2 years ago

Hidden

•10 months ago

3 Replies

New gold standard for first line treatment UK?

https://youtu.be/afiSqnU3HIw I watched the CLL Support association latest YouTube with Dr Helen Marr. She stated that the first line treatment in the uk is now...

https://youtu.be/afiSqnU3HIw I watched the CLL Support association latest YouTub...

headjog

•10 months ago

14 Replies

Faster heartbeat with acalabrutinib?

Hi Everyone! I started taking Acalabrutinib about 6 weeks ago. The last few days my heartbeat has kicked up a bit. Nothing extremely high just on the high...

Hi Everyone! I started taking Acalabrutinib about 6 weeks ago. The last few da...

albie58

•10 months ago

13 Replies

Haematoma floor of mouth

Hi, is it normal to have Haematoma on floor of mouth, under tongue and coming up to top side of tongue. I have had this twice in two years. Think I just...

Hi, is it normal to have Haematoma on floor of mouth, under tongue and coming up...

Walkingtall62

•10 months ago

11 Replies

follow up question on my post for "more good news for cancer patients " ponatinib and dostarlimab

Hi everyone , i posted a link to an article about new cancer treatments which have been discussed on HU before ; -- so my question is ----- ; how long...

Hi everyone , i posted a link to an article about new cancer treatments which ha...

craterlake

•10 months ago

2 Replies

more good news for cancer patients watch included video about dostarlimab

https://www.msn.com/en-us/health/medical/cancer-breakthrough-as-experts-find-existing-drug-can-fight-aggressive-tumors/ar-AA1dIgNm?ocid=hpmsn&cvid=78109443f9ec4

https://www.msn.com/en-us/health/medical/cancer-breakthrough-as-experts-find-exi...

craterlake

•10 months ago

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CLL and Raised Blood Protein

I have CLL TP53 P17 Del. I am on watch and wait and have been for 8 years. I have some pain in my arm and rib area, and the GP has done a blood test that was...

I have CLL TP53 P17 Del. I am on watch and wait and have been for 8 years. I h...

Motorman

•10 months ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2023

Zinc supplement?

Further evidence that even moderate exercise is good for your long term health - particularly when you have CLL!

Holding Acalabrutinib for procedures, etc.

Your cancer treatment record

Dietary Interventions and CLL - a case report

I don’t know what to expect or do 🤦🏽‍♀️

Why is CLL mainly a disease of older people?

My Radio Humberside piece

CLL Ireland Patient and Carer Day

windemere

Exercisedduring and after Cancer Treatment,

Repeat MRI

Gyny problems

Haemophilus Influenzae

CLL and Bells Palsy.

CLL treatment for commobidities

Flecanide or Propafenone when on ALCALABRUTINIB

Supplements and Running

Back and joint pains .

diagnosed march 55yr old

Botox

Acalabrutinib and Surgery

Six monthly

mrs J.

New gold standard for first line treatment UK?

Faster heartbeat with acalabrutinib?

Haematoma floor of mouth

follow up question on my post for "more good news for cancer patients " ponatinib and dostarlimab

more good news for cancer patients watch included video about dostarlimab

CLL and Raised Blood Protein

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