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CLL Support

22,532 members • 38,709 posts

All posts for June 2022

International COVID-19 Blood Cancer Coalition campaign starts today. ICBCC

International COVID-19 Blood Cancer Coalition campaign starts today. We need your help to spead awareness of the impact of the pandemic on our blood cancer...

International COVID-19 Blood Cancer Coalition campaign starts today. We need yo...

Irishcll

•2 years ago

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Calamity strikes again

Well folks I had a fun day yesterday ... not! Whilst washing the kitchen floor yesterday morning I somehow fell with a kettle full of boiling water. I scalded...

Well folks I had a fun day yesterday ... not! Whilst washing the kitchen floor ...

kitchengardener2

•2 years ago

38 Replies

Contact consultant?

*update* have managed to contact nurse practitioner, they are arranging appointment thank you all so much for giving me confidence I was not being a drama...

*update* have managed to contact nurse practitioner, they are arranging appoint...

hogglez

•2 years ago

15 Replies

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Lymph glands

This is probably a really stupid question but, is there a way to get the lymph glands to get smaller? My WBC is 6.8. All other blood tests are normal, but my...

This is probably a really stupid question but, is there a way to get the lymph g...

Bunnie1

•2 years ago

5 Replies

Calquence anyone?

Interested to see who is on Calquence and if you have found a prescription plan that covers it with Medicare.

Interested to see who is on Calquence and if you have found a prescription plan ...

Sandlot

•2 years ago

23 Replies

Richter's syndrome - Update- Lecture by pathologist Elias Campo

Hello everyone Yesterday I had the pleasure of attending a conference given by the pathologist PR Elias Campo at the Oncopole hospital in Toulouse. The topic...

Hello everyone Yesterday I had the pleasure of attending a conference given by t...

Priss69

•2 years ago

11 Replies

Cost of CLL Treatment in Ontario

Hi all. I was diagnosed with CLL at age 48 and am now 52 and symptoms have progressed to the point where I expect treatment will be needed soonish. We are...

Hi all. I was diagnosed with CLL at age 48 and am now 52 and symptoms have prog...

Murphy63

•2 years ago

9 Replies

Travel with CLL

I am 81 years old, diagnosed with CLL in April 2019. I have been on ibrutinib since February 2020. I was getting a number of side effects, so cut my intake...

I am 81 years old, diagnosed with CLL in April 2019. I have been on ibrutinib s...

CCgroup

•2 years ago

18 Replies

Travelling out of the UK first time in 4 years - insurance and health care?

I'm going to visit Norway for a month with my wife, cat-sitting for her sister who just had a baby. Flat is all ours, high-quality masks and "extra legroom"...

I'm going to visit Norway for a month with my wife, cat-sitting for her sister w...

deveritt

•2 years ago

7 Replies

Purified water ? Missing minerals ?

Here in Florida, the local water for "drinking" and cooking which is available in supermarkets tastes awful. Water from other states and other countries is...

Here in Florida, the local water for "drinking" and cooking which is available i...

janvog

•2 years ago

14 Replies

My friend tested positive for Covid

I had a visit from a friend on Sunday, we sat outside in the garden for coffee and certainly didn't get close. We are still being extremely careful, don't let...

I had a visit from a friend on Sunday, we sat outside in the garden for coffee a...

kitchengardener2

•2 years ago

35 Replies

umbralisib

I know I have posted before about being in the Phase II trial with the drugs ublituximab, umbralisib, and 2 years of venetoclax. Again, the trial was...

I know I have posted before about being in the Phase II trial with the drugs ubl...

beanlake14

•2 years ago

11 Replies

Creatinine elevated on CLL

I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time as a year. Now my creatinine level start to increase. Did anyone have this...

I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time...

farber

•2 years ago

9 Replies

Low WBC on Venetoclax but feeling ok

Hey folks! I feel like I'm reading more these days trying to find answers to questions already asked. I believe l'm on a particular protocol sensitive to my...

Hey folks! I feel like I'm reading more these days trying to find answers to que...

KelseyNoelle

•2 years ago

19 Replies

3.30pm BST Fri 24th June - webinar - Are there ways to help cope with a leukaemia diagnosis?

The emotional impact of a leukaemia diagnosis can be just as debilitating as the physical effects, sometimes more so. Diagnosis does not only affect the...

The emotional impact of a leukaemia diagnosis can be just as debilitating as the...

HAIRBEAR_UK

Founder Admin•2 years ago

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Hand Foot and Mouth

Hi I was diagnosed with CLL in March this year so still trying to get my head round it all. But have learnt so much from this site. I’m on W&W and have blood...

Hi I was diagnosed with CLL in March this year so still trying to get my head ro...

Hilaryb93

•2 years ago

8 Replies

Dietary factors and risk of chronic lymphocytic leukemia and small lymphocytic lymphoma

I'm posting this in a separate thread for more people to see. The publication is freely accessible and covers a large array of people. I will not participate...

I'm posting this in a separate thread for more people to see. The publication is...

Yalokin

•2 years ago

4 Replies

Good news on vaccine efficacy for the 80%

A letter in "Cancer Cell" (sounds like a pretty malicious PP prison) from the Birmingham-based research team to whom we were sending blood. Topic: COVID-19...

A letter in "Cancer Cell" (sounds like a pretty malicious PP prison) from the Bi...

Me2AsWell

•2 years ago

11 Replies

CLL vs Prostate

Does CLL affect the prostate and cause high PSA numbers. I'm in stage 0 with WBC count averaging 17-20. My prostate is pretty freaking big and I'm searching...

Does CLL affect the prostate and cause high PSA numbers. I'm in stage 0 with WBC...

Happyhtr8

•2 years ago

11 Replies

Dostarlimab - Check point inhibitor

Some of you may have already read about a new check point inhibitor, Dostarlimab, which cured 100% of clinical trial patients (only 12 in advance stage) who...

Some of you may have already read about a new check point inhibitor, Dostarlimab...

nuji

•2 years ago

4 Replies

CLL & Covid

Sunday 06/12/22 CLL Unmutated Had all shots and booster, plus Evusheld Husband just now tested positive for Covid. I’m in a panic, daughter lives with us...

Sunday 06/12/22 CLL Unmutated Had all shots and booster, plus Evusheld Husband...

Tapps

•2 years ago

9 Replies

How do I know that my responses are actually going out?

As much as I like and perhaps even need the peer support that we give each other here, I find it still confusing, not certain if my replies to some of the...

As much as I like and perhaps even need the peer support that we give each other...

leopardo

•2 years ago

4 Replies

what provoked my CLL?

Educating myself about CLL, I read that prolonged stimulation of the immune system in combination with genetic mutations and / or predisposition leads to CLL....

Educating myself about CLL, I read that prolonged stimulation of the immune syst...

Yalokin

•2 years ago

122 Replies

Thank you to our co drivers

Thank you for co driving with us on this difficult journey though it is tough, you always stand by us, and you encourage us to go on a mile at a time. You...

Thank you for co driving with us on this difficult journey though it is tough, y...

AmCLL

•2 years ago

2 Replies

Podcast about our cancer journey and lives

Sean Brandow, chaplain for the Humboldt Broncos, interviewed me this last week about my story with Murray's life and CLL cancer journey. Here is the link to...

Sean Brandow, chaplain for the Humboldt Broncos, interviewed me this last week a...

Glees

•2 years ago

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Haemoglobin concerns

Thank you to everyone of you that has responded to my post. All been very helpful. 😊

Thank you to everyone of you that has responded to my post. All been very help...

Stavrou1

•2 years ago

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Evusheld and heart

I’m now eligible for Evusheld (in Australia), being recently finished Rituxamib. My wife & I have been very cautious and are Covid-free so far, but thinking...

I’m now eligible for Evusheld (in Australia), being recently finished Rituxamib....

Moggn

•2 years ago

11 Replies

EHA Updates coming thick and fast

As quickly as I'm posting them more are popping up on the VJHemOnc website so here's the link. There's an awful lot to read here and to keep up to date you...

As quickly as I'm posting them more are popping up on the VJHemOnc website so he...

Jm954

Administrator•2 years ago

3 Replies

EHA 2022 | LAVA-051: a novel bispecific T-cell engager for R/R hematological malignancies

Another novel bispecific T-cell engager for the R/R group of patients bringing hope to patients who have exhausted treatment options. This one targets a very...

Another novel bispecific T-cell engager for the R/R group of patients bringing h...

Jm954

Administrator•2 years ago

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From EHA June 2022. Treating hypertension in patients receiving BTK inhibitors

My own Ibrutinib induced hypertension has been tricky to treat and Losartan, which did suit me, had to be stopped as it was contraindicated. Now on...

My own Ibrutinib induced hypertension has been tricky to treat and Losartan, whi...

Jm954

Administrator•2 years ago

9 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2022

International COVID-19 Blood Cancer Coalition campaign starts today. ICBCC

Calamity strikes again

Contact consultant?

Lymph glands

Calquence anyone?

Richter's syndrome - Update- Lecture by pathologist Elias Campo

Cost of CLL Treatment in Ontario

Travel with CLL

Travelling out of the UK first time in 4 years - insurance and health care?

Purified water ? Missing minerals ?

My friend tested positive for Covid

umbralisib

Creatinine elevated on CLL

Low WBC on Venetoclax but feeling ok

3.30pm BST Fri 24th June - webinar - Are there ways to help cope with a leukaemia diagnosis?

Hand Foot and Mouth

Dietary factors and risk of chronic lymphocytic leukemia and small lymphocytic lymphoma

Good news on vaccine efficacy for the 80%

CLL vs Prostate

Dostarlimab - Check point inhibitor

CLL & Covid

How do I know that my responses are actually going out?

what provoked my CLL?

Thank you to our co drivers

Podcast about our cancer journey and lives

Haemoglobin concerns

Evusheld and heart

EHA Updates coming thick and fast

EHA 2022 | LAVA-051: a novel bispecific T-cell engager for R/R hematological malignancies

From EHA June 2022. Treating hypertension in patients receiving BTK inhibitors

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