Posts - CLL Support | HealthUnlocked

CLL Support

22,516 members • 38,673 posts

All posts for May 2022

Evusheld - Do the risks outweigh the benefits?

Hi everyone, I’m just asking for some advice. My husband finished 12 months of Obinutuzumab/Venetoclax in April and we’ve done our own research and discovered...

Hi everyone, I’m just asking for some advice. My husband finished 12 months of O...

Gretriever

•2 years ago

33 Replies

CLL cronic cough

Hi to you all. Watch and wait 11 years,no treatment just daily doxycycline to help with antibodies. Over the past five years have had a mostly dry cough three...

Hi to you all. Watch and wait 11 years,no treatment just daily doxycycline to he...

mickyboy63

•2 years ago

14 Replies

Evusheld Secod Dose

Wondering if anyone has received a second full dose of Evusheld, or have heard any guidance for re-dosing? Got mine at the beginning of March, with 1197...

Wondering if anyone has received a second full dose of Evusheld, or have heard a...

Davidcara

•2 years ago

5 Replies

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Wellness poster for my stay at hospital

I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use...

I am due to have a stem cell transplant and have prepared myself for my stay at ...

Kraskie1915

•2 years ago

12 Replies

Covid time period

For those that have had Covid, how many days passed between your first positive result to your first negative result?

For those that have had Covid, how many days passed between your first positive ...

17Pisme

•2 years ago

29 Replies

Tachycardia and Ibrutinib

So after 2 1/2 years with pretty much zero side effects on Ibrutinib, I ended up in A&E with Tachycardia. My heart raced to 178 and BP was 165/110. It would...

So after 2 1/2 years with pretty much zero side effects on Ibrutinib, I ended up...

MovingForward4423

•2 years ago

17 Replies

ENTROPION Lower eyelid turned inwards)

Has anyone with CLL had such a nuisance? If so, please LMK how it was treated 🤔

Has anyone with CLL had such a nuisance? If so, please LMK how it was treated 🤔...

unairdefamille

•2 years ago

21 Replies

T CELL's Mechanically Engineered.

Hi All, some time ago I read a very interesting article, (It may even have been on this Website.) It was regarding a Trail done many years ago, in one of the...

Hi All, some time ago I read a very interesting article, (It may even have been ...

Vindicatrix

•2 years ago

8 Replies

Calquence headaches

Hello everyone, just started taking Calquence a little over a week ago and having terrible headaches. My brother suggested drinking coffee which helped...

Hello everyone, just started taking Calquence a little over a week ago and havin...

PokeyPig

•2 years ago

26 Replies

Thanks

Thanks so much for the warm welcome!

PokeyPig

•2 years ago

Be the first to reply

Avoiding covid in London

Do people in London wear masks? Is it difficult to eat outdoors there? Are there resources available? My husband, who’s recently had surgery, needs to go...

Do people in London wear masks? Is it difficult to eat outdoors there? Are th...

Atds

•2 years ago

9 Replies

Female Issues ?

Hey friends! 11q mutated here. I'm 3 months into my Calquence and just starting thr 2nd week of the Venetoclax. Tiredness and headaches have been my main...

Hey friends! 11q mutated here. I'm 3 months into my Calquence and just starting...

KelseyNoelle

•2 years ago

17 Replies

Gluten

GLUTEN is good or not good for cll ?

tms99532

•2 years ago

23 Replies

Prognostic factors identify 11q deletion and unmuted status

I just received result of my CLL prognostics markers. Unfortunately, I am positive for 11q deletion and am unmutated. From what I understand, 11q deletion is...

I just received result of my CLL prognostics markers. Unfortunately, I am positi...

peacethruthestorm

•2 years ago

47 Replies

fungal infections

I developed toenail fungus. I have been on Ibrutinib low dose for about 6 years. I just read a Journal article stating that Ibrutinib causes fungal...

I developed toenail fungus. I have been on Ibrutinib low dose for about 6 years...

MsChief

•2 years ago

48 Replies

CLL drugs covered in Ontario

Can anyone direct me to a list, or tell me which first line treatment targeted therapy drugs are covered (paid for or reimbursable)? i.e., Ibrutinib,...

Can anyone direct me to a list, or tell me which first line treatment targeted ...

Cave123

•2 years ago

10 Replies

LDH Lactate Dehydrogenase Off The Charts - Why?

I completed my 12 months Obinutuzumab/Venclexta treatment regimen March 1st. I go tomorrow (Friday, May 27, 2022) for my first doctor visit since ending...

I completed my 12 months Obinutuzumab/Venclexta treatment regimen March 1st. I...

DanBro1

•2 years ago

5 Replies

Jab 'n' spray, bugs away

Maybe this is how we'll be dealing with Covid and its successors in the future...

Maybe this is how we'll be dealing with Covid and its successors in the future.....

bennevisplace

•2 years ago

11 Replies

Any news of STATIC?

Just coming to the end of my time on the FLAIR trial, and am faced with the prospect of stopping Ibrutinib. Is there any news of the proposed follow on trial,...

Just coming to the end of my time on the FLAIR trial, and am faced with the pros...

Bikerambler

•2 years ago

5 Replies

Acalabrutinib versus Covid19?

Various reports suggest that CLL patients in clinical trials prescribed Acalabrutinib who contract covid 19 are surviving well due the anti inflammatory impact...

Various reports suggest that CLL patients in clinical trials prescribed Acalabru...

spanish36

•2 years ago

28 Replies

The role of ibrutinib in COVID-19 hyperinflammation: A case report April 2021

In case anyone missed this when posted a year+ ago https://www.sciencedirect.com/science/article/pii/S1201971221001429

In case anyone missed this when posted a year+ ago https://www.sciencedirect.com...

zaax

•2 years ago

1 Reply

O&V treatment - a positive update from ‘The Kitchen’

Hello everyone, Cycle #2 of O was a pleasure, I was treated to a relaxing aromatherapy reflexology session. Hats off to Guy’s Cancer Centre, you really know...

Hello everyone, Cycle #2 of O was a pleasure, I was treated to a relaxing aromat...

Miu48

•2 years ago

6 Replies

CLL and environmental allergies

This morning i woke up with such swollen nodes in my throat and in my chest by airway where the majority of my nodes are , I was actually panicked! But I also...

This morning i woke up with such swollen nodes in my throat and in my chest by a...

JerrysGirl3

•2 years ago

16 Replies

Hello, new diagnosed Cll and have questions

I am 50. B cell. Swollen lympnodes in stomach area. 15.5 cm swollen spleen. Non Hodgkins. Indolent? I think I heard. I'm not clear on "living a long time"...

I am 50. B cell. Swollen lympnodes in stomach area. 15.5 cm swollen spleen. Non...

Diagnosedat50

•2 years ago

11 Replies

Venclexta Rash

Good Morning, Has anyone broken out in a rash on their hand or elsewhere from taking Venclexta. I am taking 600mg daily and have been since November of 2021....

Good Morning, Has anyone broken out in a rash on their hand or elsewhere from t...

brooklyn7672

•2 years ago

6 Replies

Vaccines After Treatment

When I was first diagnosed with CLL I was given 'top-up' vaccines for the normal childhood illnesses. In addition in the last two years I have had Shingrix...

When I was first diagnosed with CLL I was given 'top-up' vaccines for the norma...

GerryPL

•2 years ago

6 Replies

Cost Effective Venetoclax from India or elsewhere

Hi Everyone. Does anyone have experience successfully importing an effective Venetoclax from India? Here in NZ the drug would cost over $ 100, 000 which I...

Hi Everyone. Does anyone have experience successfully importing an effective Ven...

dj02

•2 years ago

10 Replies

Can anyone with a blood cancer register?

I have a friend in my support group who could use the resources in this community. Her blood cancer is rare. Can she register her?

I have a friend in my support group who could use the resources in this communit...

unairdefamille

•2 years ago

3 Replies

Actual date

Why do we not see the actual dates of posts? Sometimes I am reading old ones and the treatment has already improved.

Why do we not see the actual dates of posts? Sometimes I am reading old ones an...

seoul1949

•2 years ago

5 Replies

UK Patients: Can you help with your opinion about treatment options. Have you received Ibrutinib + Venetoclax as your first treatment?

Can you help us to provide evidence of the patient experience of treatments in CLL and specifically, of this treatment for a UK NICE technology appraisal in...

Can you help us to provide evidence of the patient experience of treatments in C...

Jm954

Administrator•2 years ago

10 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2022

Evusheld - Do the risks outweigh the benefits?

CLL cronic cough

Evusheld Secod Dose

Wellness poster for my stay at hospital

Covid time period

Tachycardia and Ibrutinib

ENTROPION Lower eyelid turned inwards)

T CELL's Mechanically Engineered.

Calquence headaches

Thanks

Avoiding covid in London

Female Issues ?

Gluten

Prognostic factors identify 11q deletion and unmuted status

fungal infections

CLL drugs covered in Ontario

LDH Lactate Dehydrogenase Off The Charts - Why?

Jab 'n' spray, bugs away

Any news of STATIC?

Acalabrutinib versus Covid19?

The role of ibrutinib in COVID-19 hyperinflammation: A case report April 2021

O&V treatment - a positive update from ‘The Kitchen’

CLL and environmental allergies

Hello, new diagnosed Cll and have questions

Venclexta Rash

Vaccines After Treatment

Cost Effective Venetoclax from India or elsewhere

Can anyone with a blood cancer register?

Actual date

UK Patients: Can you help with your opinion about treatment options. Have you received Ibrutinib + Venetoclax as your first treatment?

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