CLL Support | HealthUnlocked

CLL Support

23,516 members•40,204 posts

How did it happen?

This is a bit of an investigative piece on how did I get CLL. I’m sure many of us have tried to pinpoint how we got CLL and really none of my doctors have...

This is a bit of an investigative piece on how did I get CLL. I’m sure many of ...

steve_canada

•3 days ago

55 Replies

Good News at Last

I've got a long and varied CLL history. Long story made short for those not familiar, I was diagnosed in 2013 in my own lab when I was working as a NHS...

I've got a long and varied CLL history. Long story made short for those not fam...

Jm954

Administrator•1 month ago

115 Replies

Start treatment just based on fatigue?

I have SLL version, Mutated, Trisomy12 & 13Q and a couple other less well researched markers. Enlarged (1cm+) nodes all over, the ones I can feel wax and wane...

I have SLL version, Mutated, Trisomy12 & 13Q and a couple other less well resear...

TLSAtlanta

•5 days ago

33 Replies

IV v oral venetoclax and ibrutinib

Hello all At his appt yesterday husband was told that chemo will begin in six weeks. He has the option of IV or oral treatment with venetoclax and ibrutinib...

Hello all At his appt yesterday husband was told that chemo will begin in six...

Noelnoel

•9 days ago

42 Replies

vaccination for people around you…

long story short, my dad has high risk CLL. He is still on W&W but will likely start treatment in February. my dad really wants my fiancé to get vaccinated...

long story short, my dad has high risk CLL. He is still on W&W but will likely s...

anongirll1927

•12 days ago

41 Replies

finally

after 12 years on w&w I am about to begin a course of Rituxamab. I would appreciate any advice etc from othe members of our community who have experienced the...

after 12 years on w&w I am about to begin a course of Rituxamab. I would apprec...

skytortoise

•4 days ago

23 Replies

Did I have CLL for years before diagnosis?

I am wondering if I had CLL for years before getting the diagnosis. I had nightly sweats, anxiety, dread and feeling sort of "poisoned" upon waking for many...

I am wondering if I had CLL for years before getting the diagnosis. I had nightl...

dhamra

•3 days ago

20 Replies

Tinnitus

Anyone else have terrible loud tinnitus? Thanks

dhamra

•3 days ago

20 Replies

coming to end of V+O treatment

I’m in Ontario Canada and I’ll be starting cycle 12 of V in February. Wondering what I should expect in the way of tests, measures etc. Bloodwork has been in...

I’m in Ontario Canada and I’ll be starting cycle 12 of V in February. Wondering ...

Swanseacity

•6 days ago

25 Replies

Happy Christmas.

Wishing one and all a merry christmas and a happy, healthy new year.

Jacksc06

•1 day ago

11 Replies

happy Christmas

I rarely post now due to having a stroke but wanted to come and say happy Xmas to all on this wonderful supportive forum xx have a wonderful day xx

I rarely post now due to having a stroke but wanted to come and say happy Xmas ...

9876

•1 day ago

10 Replies

Newly diagnosed and looking for guidance on resources to educate myself. Tried dr Google and ended up in a doom loop so any advice accepted

Fresh from diagnosis and need to learn as much as I can

TobyBelch

•8 days ago

25 Replies

CHICKENPOX

Being a CLL patient and on Acalabrutinib is it best to stay away from people who are in contact with chickenpox?? My neighbour's grandchild who is 2 has it and...

Being a CLL patient and on Acalabrutinib is it best to stay away from people who...

Westie11-

•2 days ago

12 Replies

Lowering IgG as sign of progression?

Hey, all, just wondering. My oncologist has never had my IgG checked. Yet it was a low IgG that led my PG to send me to a specialist who then diagnosed the...

Hey, all, just wondering. My oncologist has never had my IgG checked. Yet it w...

Vlaminck

•8 days ago

23 Replies

Another question for advice please.

As my latest blood tests are possibly showing a deterioration in health (I've been looking things up) and I'm to see GP tomorrow ,I'm wondering if it will be...

As my latest blood tests are possibly showing a deterioration in health (I've be...

pet-lamb

•4 days ago

16 Replies

Headaches and CLL

Has anyone anything to offer with regard to constant headaches. I’ve had this for four weeks. Been put on 40mgs Predisolone steroid as it might be GCA but...

Has anyone anything to offer with regard to constant headaches. I’ve had this ...

keeptalking

•30 days ago

42 Replies

opemrazole gastro capsules

having cll and issues I have been on omeprazole for years due to the amount of meds Iam on. However recently been told that these are not for long term use....

having cll and issues I have been on omeprazole for years due to the amount of m...

Tonnross

•1 month ago

43 Replies

chemo update

Seasons greetings to all, back to the consultant today to hear what treatment programme will be put on, kind of hoping for Brukinsa but need to take away...

Seasons greetings to all, back to the consultant today to hear what treatment ...

Jim-Boy

•6 days ago

19 Replies

O+V protocol

I was reading Bill188's post where he talked about taking V for 2 year plan. And there is discussion about the clonoseq test? Being a little confused I posted...

I was reading Bill188's post where he talked about taking V for 2 year plan. And...

Rico49

•8 days ago

20 Replies

Holidays

Just want to take minute and wish everyone, Merry Christmas and Happy Healthy New Year! God bless us all.

Just want to take minute and wish everyone, Merry Christmas and Happy Healthy Ne...

Cindi73

•3 days ago

12 Replies

venetoclax side effects

Hello, This week I started the final increase of venetoclax, 400mg. I had few side effects on previous increases. I am now experiencing mild stomach pain and...

Hello, This week I started the final increase of venetoclax, 400mg. I had few s...

KnittingPacker

•20 days ago

31 Replies

Season's wishes from CLL Support

As 2024 draws to a close, we would like to send a massive heartfelt “thank you” to you, our members, for loyally supporting this forum over the year. We extend...

As 2024 draws to a close, we would like to send a massive heartfelt “thank you” ...

pkguk2

Partner•4 days ago

12 Replies

Pulsatile tinnitus and hearing loss

I had a work up for onset of pulsation tinnitus and later a sudden hearing loss in one ear by Neurologist ,ENT ,Dentist and they found no reason for tinnitus...

I had a work up for onset of pulsation tinnitus and later a sudden hearing loss ...

Walkinginnature

•29 days ago

32 Replies

Pirtobrutinib Delays Progression in CLL Already Treated With a BTK Inhibitor. (BRUIN CLL-321 Phase III trial results reported at ASH2024)

Pirtobrutinib is the first FDA approved non-covalent BTK inhibitor (BTKi) for the treatment of CLL. The previously approved BTKi drugs (acalabrutinib,...

Pirtobrutinib is the first FDA approved non-covalent BTK inhibitor (BTKi) for th...

AussieNeil

Administrator•14 days ago

22 Replies

Lipid Metabolism in Chronic Lymphocytic Leukemia

I was looking for information regarding cholesterol medication "ezetimibe" and I came across this article. There seams to be a relation between regulating...

I was looking for information regarding cholesterol medication "ezetimibe" and I...

Edalv

•14 days ago

21 Replies

HOLIDAY SEASON

I would like to wish Everyone a Very Merry Christmas 🎅 🎄 😊. Hope you're all doing well . From my Home to yours, Wishing you the Merriest of...

I would like to wish Everyone a Very Merry Christmas 🎅 🎄 😊. Hope you're all...

Butterchick

•6 days ago

13 Replies

Comments on blood test

I am W&W for two years not nearing treatment. Just had 6 mth blood test results and have telephone call on Monday. A few ‘things’ are at top or bottom of...

I am W&W for two years not nearing treatment. Just had 6 mth blood test results ...

Saju21

•11 days ago

17 Replies

Increased Hair loss upon starting Calquence and Gazyva Infusions

I started treatment for my relapsed CLL about 8 weeks ago. 2 doses of Calquence daily and 4 weekly infusions of Gazyva, The infusions are now going to be 6...

I started treatment for my relapsed CLL about 8 weeks ago. 2 doses of Calquence ...

Challis12

•13 days ago

17 Replies

Sudden allergy to dogs

Hi all, I'm a 73-year-old man living in Arizona and I have had CLL for 10 years and still w/w. I have always had pet dogs. In the last 6 months, somehow I've...

Hi all, I'm a 73-year-old man living in Arizona and I have had CLL for 10 years ...

SunnyDan

•1 month ago

26 Replies

Anyone have eye issues associated with CLL?

eye is inflamed, itchy and has excessive tearing. No treatment at this time. Ophthalmologist and specialist cannot figure it out. No blockage.

eye is inflamed, itchy and has excessive tearing. No treatment at this time. O...

Tulear

•10 days ago

14 Replies

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