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CLL Support

23,138 members • 39,744 posts

All posts for March 2023

fluoroscopic procedure?

I need to have a lumbar puncture with a fluoroscopic x-ray. has anyone had experience with this

I need to have a lumbar puncture with a fluoroscopic x-ray. has anyone had exper...

jjaye

•2 years ago

9 Replies

CLL symptoms and Obin reactions

Hi I was diagnosed with CLL 12 years ago while doing evaluations for worsening muscle pain for 10 years My oncologists say and I’ve never found any...

Hi I was diagnosed with CLL 12 years ago while doing evaluations for worsenin...

skipro

•2 years ago

27 Replies

Further problems with allergy - what to do?

In February I wrote a post about an allergy crisis that I had just had, and many of you responded very kindly with good feedback and information. The...

In February I wrote a post about an allergy crisis that I had just had, and many...

Provence

•2 years ago

1 Reply

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TOOTH EXTRACTION

I am advised by my dentist that I need a back molar extracted. She is questioning if she can carry out the procedure at the dentist practice or if I need to...

I am advised by my dentist that I need a back molar extracted. She is questioni...

RobertCLL

•2 years ago

9 Replies

Looking for a new CLL doctor

I live in the Chicago area. 12 years ago I was diagnosed 12 trisomy and was on W and W until 2020. I've been on ibrutinib for 3 yrs now My doctor from...

I live in the Chicago area. 12 years ago I was diagnosed 12 trisomy and was on ...

villaben

•2 years ago

6 Replies

Platelets at 93

My platelets are at 93 and I am on watch and wait. They have been slowly but consistently dropping over the past few years. Is there an alternative that would...

My platelets are at 93 and I am on watch and wait. They have been slowly but con...

Baffin

•2 years ago

2 Replies

A trial and some tribulations

After final screening on February 14 (Valentine's Day!), a week later, I started the NCT05536349 trial , "Time-limited Triplet Combination of Pirtobrutinib,...

After final screening on February 14 (Valentine's Day!), a week later, I started...

SeymourB

•2 years ago

25 Replies

LLS.org (USA) is proud to partner with Dollar For to help reduce or eliminate medical debt- YOU MAY NOT HAVE TO PAY THAT HOSPITAL BILL

.YOU MAY NOT HAVE TO PAY THAT HOSPITAL BILL U.S. law requires non-profit hospitals to offer “charity care” programs that reduce or eliminate bills for...

.YOU MAY NOT HAVE TO PAY THAT HOSPITAL BILL U.S. law requires non-profit hospit...

lankisterguy

Volunteer•2 years ago

2 Replies

New drug: MS-553 inhibitor for CLL/SLL who develop resistance to BTK inhibitors

MS-553 is a protein kinase C-beta (PKCß) inhibitor designed to be an alternative treatment option for patients with CLL/SLL who develop resistance to BTK...

MS-553 is a protein kinase C-beta (PKCß) inhibitor designed to be an alternative...

spi3

•2 years ago

16 Replies

I need to calm down.

Good evening to you all. I am currently in a state where my anxiety levels are through the roof. i was diagnosed a year ago and have been on W&W ever since. I...

Good evening to you all. I am currently in a state where my anxiety levels are t...

Typhoon770

•2 years ago

24 Replies

Travel insurance within the UK.

I'm travelling from Essex to Belfast next month and am looking for travel insurance. With belfast being in the UK I wonder if I actually need cover anyway. I...

I'm travelling from Essex to Belfast next month and am looking for travel insura...

Kraskie1915

•2 years ago

9 Replies

Constant skin rashes

As some may know I have been fighting constant skin rash since November, antibiotics help clear it up along with steroid cream but not quite get rid of it ....

As some may know I have been fighting constant skin rash since November, antibio...

cartwheels

•2 years ago

15 Replies

Easy breathe masks

I am not sure if it is because we are wearing masks still, sometimes for quite long periods but I am noticing that my breathing isn't as good as it was. When...

I am not sure if it is because we are wearing masks still, sometimes for quite l...

kitchengardener2

•2 years ago

77 Replies

Travel Insurance for Kiwis (NZers)

Hi I have an update on my post below from a few weeks ago Much to my surprise I have been successful in being offered travel insurance to cover my existing...

Hi I have an update on my post below from a few weeks ago Much to my surprise I...

Moorsa

•2 years ago

2 Replies

Is anyone on Zanubrutinib?

helenolton

•2 years ago

6 Replies

Been on Calquence for 4 months and have itching and hives

Been on Calquence for 4 months and have itching and hives. My counts are almost normal except for my platelets. I still have side effects of my ears ringing....

Been on Calquence for 4 months and have itching and hives. My counts are almost...

helenolton

•2 years ago

8 Replies

Rituxan

Hi I had 4 treatments with Rituxan. All but the first were well tolerated. During the first treatment I experienced intense itching starting at the right...

Hi I had 4 treatments with Rituxan. All but the first were well tolerated. Duri...

akirsch973

•2 years ago

1 Reply

Anaemia or CLL? Time for re-referral?

Surfacing after periscope depth for some time. Well...... over the past 3 years my wife has suffered Covid, Shingles, breast cancer and a cardiac arrest in...

Surfacing after periscope depth for some time. Well...... over the past 3 yea...

NavyDavy

•2 years ago

31 Replies

What is available as treatment after Venetaclex finishes in 11 months for me if I relapse?

What is available for me when I finish this course of Venetaclex in 11 months time if I relapse? I’ve had almost 4 years of Ibrutinib prior to this regimen....

What is available for me when I finish this course of Venetaclex in 11 months ti...

Veebeegeebee

•2 years ago

11 Replies

Can anyone figure out my MRD

Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. ComponentYour ValueStandard Range Interpretation Flow cytometric...

Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. ...

johnliston

•2 years ago

3 Replies

Losing Weight

My partner, CLL in remission for 4 years this month after only 3 cycles of B & R, has lost 6 pounds in the last two weeks. He has not changed his eating habits...

My partner, CLL in remission for 4 years this month after only 3 cycles of B & R...

Dancelu

•2 years ago

4 Replies

Do I need a Specialist

I was diagnosed w/ CLL in 2008. My Hematologist/Oncologist says I'm in the W&W stage. I am 77.y y.o. I exercise 10 hrs/per wk, am vegan, WBC 12.0 (4.6-10.2),...

I was diagnosed w/ CLL in 2008. My Hematologist/Oncologist says I'm in the W&W s...

PurplePotato69

•2 years ago

12 Replies

Referral

I am on watch with cll but suspect the time for treatment is approaching. My physician is a hematologist who has been satisfactory. I would have preferred...

I am on watch with cll but suspect the time for treatment is approaching. My phy...

Baffin

•2 years ago

2 Replies

Starting V&O - how strict should I be with contacts/travel/work?

Hey everyone, I am starting treatment next week and was interested to know how cautious people were with meeting people, using public transport and...

Hey everyone, I am starting treatment next week and was interested to know h...

Our_wes123

•2 years ago

15 Replies

Doubling Lymphocytes

My Lymphocytes were 16-4 in feb 2022 and 32.8 beginning of March this year does that mean a more agressive treatment I have been looking on google and got...

My Lymphocytes were 16-4 in feb 2022 and 32.8 beginning of March this year do...

Kiwi77

•2 years ago

8 Replies

Memory

Is anyone else having memory problems? , am on watch and wait.

Shiresboy

•2 years ago

10 Replies

Teeth!

Has anyone found that CLL complications or treatment affected their teeth?! Following three months of intermittent neutropenia, steroids and 1 month of...

Has anyone found that CLL complications or treatment affected their teeth?! Fol...

Greenbunnies

•2 years ago

8 Replies

I’m scared of treatment

Venetoclax and Obinutuzumab My Haematologist has suggested that I may need to start treatment with these drugs and Calquence. I’ve been on Watch & Wait since...

Venetoclax and Obinutuzumab My Haematologist has suggested that I may need to s...

tigerbeauty

•2 years ago

24 Replies

Has anyone had to deal with mouth sores? If so, what was your process?

I have been on Venclexta for about 2 months and am about to do my 3rd round of Rituxan next week. Though I’ve had a few hiccups, they side effects seemed to...

I have been on Venclexta for about 2 months and am about to do my 3rd round of R...

StormySeas_2_0

•2 years ago

29 Replies

Remission cycles: I would discussion and feedback please

hello all CLL fellows and experts, I am going to ask a very general but important in my opinion. At least for me, I assume important! I have read many posts...

hello all CLL fellows and experts, I am going to ask a very general but importa...

Sagarcanada

•2 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2023

fluoroscopic procedure?

CLL symptoms and Obin reactions

Further problems with allergy - what to do?

TOOTH EXTRACTION

Looking for a new CLL doctor

Platelets at 93

A trial and some tribulations

LLS.org (USA) is proud to partner with Dollar For to help reduce or eliminate medical debt- YOU MAY NOT HAVE TO PAY THAT HOSPITAL BILL

New drug: MS-553 inhibitor for CLL/SLL who develop resistance to BTK inhibitors

I need to calm down.

Travel insurance within the UK.

Constant skin rashes

Easy breathe masks

Travel Insurance for Kiwis (NZers)

Is anyone on Zanubrutinib?

Been on Calquence for 4 months and have itching and hives

Rituxan

Anaemia or CLL? Time for re-referral?

What is available as treatment after Venetaclex finishes in 11 months for me if I relapse?

Can anyone figure out my MRD

Losing Weight

Do I need a Specialist

Referral

Starting V&O - how strict should I be with contacts/travel/work?

Doubling Lymphocytes

Memory

Teeth!

I’m scared of treatment

Has anyone had to deal with mouth sores? If so, what was your process?

Remission cycles: I would discussion and feedback please

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