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CLL Support

22,526 members • 38,690 posts

All posts for January 2022

Another Booster story

Interesting developments which I have briefly outlined as might be relevant for others. I never received the recent NHS letter regarding Priority PCR tests and...

Interesting developments which I have briefly outlined as might be relevant for ...

richardp

•2 years ago

10 Replies

Do Lym and Neu go down with ibrutinib ?

Hello friends, wishing good health to all, my father has been taking ibrutinib for ten months and now his wbc is 27k but his Neu 3.4 , Lymp 22.6 and Neu% 12.5...

Hello friends, wishing good health to all, my father has been taking ibrutinib f...

Elnaazz

•2 years ago

7 Replies

Difficulty Walking

Diagnosed CLL October 2017. On watch and wait. Since last wednesday I have found it increasingly difficult to walk. Today I booked a call with GP. He said it...

Diagnosed CLL October 2017. On watch and wait. Since last wednesday I have found...

shornoff

•2 years ago

15 Replies

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Antivirals in NZ

Just received this message from my GP after a query about availability of anti virals. Has anyone heard of this inhaler and whether or not it is effective?...

Just received this message from my GP after a query about availability of anti v...

Kiwidi

•2 years ago

13 Replies

Osteoporosis And Prolia

Hello just a quick question for all. Because of having osteoporosis,my doctor has recommended “PROLIA” the twice a year shot . I have read in the literature...

Hello just a quick question for all. Because of having osteoporosis,my doctor h...

Grandmajoanie

•2 years ago

22 Replies

Help make a drug to treat post-transplant CMV available to patients in Canada

If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cell Transplant, you can help Canadian patients gain access to this treatment by...

If you have experienced Cytomegalovirus (CMV) following your Allogeneic Stem-Cel...

CLL_Canada_Group

•2 years ago

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Antibodies after third or fourth covid vaccine

Hi Everyone, Wondering if anyone developed initial antibodies, or increased previous antibodies after a third or fourth covid vaccine while on BTK inhibitors...

Hi Everyone, Wondering if anyone developed initial antibodies, or increased pr...

Davidcara

•2 years ago

12 Replies

Tingling and numbness

Hi All Since I started my Gardening business in July 2021, Which is going really well I find that I get tingling and numbness in my hands while working but...

Hi All Since I started my Gardening business in July 2021, Which is going reall...

TheFlyer

•2 years ago

35 Replies

DOES IVERMECTIN SLOW CLL

I previously posted that my absolute lymphocyte count was steadily growing then after I had both vaccinations my counts rose 50% in a few months. I later got...

I previously posted that my absolute lymphocyte count was steadily growing then ...

mleo123

•2 years ago

23 Replies

CLL Patient on National Public Radio This Morning

Hi everyone, I was idly cooking breakfast with NPR Weekend Edition on in the background this morning (1.23), when this story, about a CLL patient's life during...

Hi everyone, I was idly cooking breakfast with NPR Weekend Edition on in the bac...

DRM18

•2 years ago

9 Replies

WBC & ALC dropped dramatically and I feel absolute rubbish

Can anyone offer me any information about this? It occurred during an illness and my specialist dismissed it as a 'lab didn't process it right' but has stayed...

Can anyone offer me any information about this? It occurred during an illness a...

wellbeingwarrior

•2 years ago

16 Replies

Ireland restrictions lifted

As restrictions are lifted in Ireland our patient community are left at even more risk. CLL patient Jan Rynne talks on Irish radio about what this means for...

As restrictions are lifted in Ireland our patient community are left at even mor...

Irishcll

•2 years ago

4 Replies

Research needed for vaxx/CLL

We need research to give us some idea of effect of vaccines on people with CLL compared to its effect on general population. So far no idea. I have never had...

We need research to give us some idea of effect of vaccines on people with CLL c...

onu1tadi2

•2 years ago

92 Replies

Did anyone have trouble logging in?

Did anyone have trouble logging into HealthUnlocked? I couldn’t sign in for like 2 weeks on my phone or computer.

Did anyone have trouble logging into HealthUnlocked? I couldn’t sign in for like...

Soundsinamotion

•2 years ago

1 Reply

CoPay Assistance from LLS (Leukemia & Lymphoma Society) USA

I just started taking Acalabrutinib / Calquence one week ago and the $2500 per month that my Medicare Part D does not pay is being covered by assistance from...

I just started taking Acalabrutinib / Calquence one week ago and the $2500 per ...

lankisterguy

Volunteer•2 years ago

25 Replies

CLL and Cholesterol

Good morning everyone. Looking some advice regarding the above. I am male, 57, UK(NI) on w+w (never treated). No symptoms with ALC of about 21. Routine GP...

Good morning everyone. Looking some advice regarding the above. I am male, 57, ...

Belfastbees

•2 years ago

29 Replies

Blood Count results and their direction!

Blood Count results and their direction! Hello everyone! I am caretaking of my wife as she is a CLL patient and she was diagnosed in November 2020. In the...

Blood Count results and their direction! Hello everyone! I am caretaking of my ...

Sagarcanada

•2 years ago

7 Replies

Frequency of MRD testing post trial

My I/V trial ended one year ago. Dr Coutre, my Stanford doctor never ordered MRD testing the entire year. Now the PA I was given wants to have one every four...

My I/V trial ended one year ago. Dr Coutre, my Stanford doctor never ordered MRD...

Catnap7

•2 years ago

24 Replies

Got Evusheld After 19 Phone Calls!

This is how it happened. If you want it, don’t give up! Started by calling the Cardiologist since my husband has afib and there can be cardiac side effects. He...

This is how it happened. If you want it, don’t give up! Started by calling the C...

Ibru

•2 years ago

12 Replies

To Test or Not to Test: Answering Your Questions About Testing for COVID-19- simple guidelines from Weill Cornell NY Presbyterian Hospital

To Test or Not to Test: Answering Your Questions About Testing for COVID-19...

lankisterguy

Volunteer•2 years ago

2 Replies

Weight Loss

Good Morning. I have been taking 600mg of Venclexta daily since November and my weight is down about 10 pounds from 168 to 158. I wish to gain the weight...

Good Morning. I have been taking 600mg of Venclexta daily since November and my...

brooklyn7672

•2 years ago

7 Replies

Troublesome skin rash

Hello everyone I haven’t posted for ages just trying to deal with multiple problems, I want to ask if anyone has any skin problems that has been linked to CLL...

Hello everyone I haven’t posted for ages just trying to deal with multiple probl...

Altindal22

•2 years ago

6 Replies

What’s going on ? Time for new treatment?

My husband George’s WCC has jumped from 28 to 60 in 6 weeks, Haemoglobin dropped from 127 To 118 & Lymphocytes from 22 to 55.6 & Platelets 87 to 67....

My husband George’s WCC has jumped from 28 to 60 in 6 weeks, Haemoglobin dropped...

Veebeegeebee

•2 years ago

8 Replies

Cll the unexpected-surgery

Well surgery was 3.5 hrs. Dr. Said he did well and went as expected. There was about 2 liters of blood in his abdomen but little lost during surgery. Had to...

Well surgery was 3.5 hrs. Dr. Said he did well and went as expected. There was a...

GrannyMyers

•2 years ago

5 Replies

Severe Neutropenia 2 months after reaching UMRD?

Many of you have heard my saga with husband's CLL journey. Was able to stop treatment in November when blood work and bone marrow biopsy confirmed he had...

Many of you have heard my saga with husband's CLL journey. Was able to stop trea...

Palmetto

•2 years ago

6 Replies

Treatment this week

I’m supposed to get a call to start acalbrutinib next week I’m 28. I also have a test to find out if I’m igvh mutated, just waiting on results. My WBC has gone...

I’m supposed to get a call to start acalbrutinib next week I’m 28. I also have a...

Palacialregalia

•2 years ago

16 Replies

My dad is newly diagnosed. ? About weight loss

My dad is 67 and was just diagnosed with CLL. We are waiting for information on staging. He went to the doctor because he has been losing weight. He has...

My dad is 67 and was just diagnosed with CLL. We are waiting for information o...

BethyBee99

•2 years ago

8 Replies

CLL IN 40s

I'm 43 and have three young children. I was recently (11/2021) diagnosed with CLL and began treatment with Gazyva. I am seeking out others in my age group to...

I'm 43 and have three young children. I was recently (11/2021) diagnosed with C...

halyard

•2 years ago

11 Replies

R-Chop failed with lymphoma, What's Next?

My wife (81 but in great physical shape) was diagnosed with stage 3 follicular lymphoma and began R-Chop therapy in August 2021, finished December. Pet scan...

My wife (81 but in great physical shape) was diagnosed with stage 3 follicular l...

ronsolo306

•2 years ago

4 Replies

Ibrutinib and covid vaccine

Hi, Do Ibrutinib have to be stopped before a covid vaccine?

Green202

•2 years ago

15 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2022

Another Booster story

Do Lym and Neu go down with ibrutinib ?

Difficulty Walking

Antivirals in NZ

Osteoporosis And Prolia

Help make a drug to treat post-transplant CMV available to patients in Canada

Antibodies after third or fourth covid vaccine

Tingling and numbness

DOES IVERMECTIN SLOW CLL

CLL Patient on National Public Radio This Morning

WBC & ALC dropped dramatically and I feel absolute rubbish

Ireland restrictions lifted

Research needed for vaxx/CLL

Did anyone have trouble logging in?

CoPay Assistance from LLS (Leukemia & Lymphoma Society) USA

CLL and Cholesterol

Blood Count results and their direction!

Frequency of MRD testing post trial

Got Evusheld After 19 Phone Calls!

To Test or Not to Test: Answering Your Questions About Testing for COVID-19- simple guidelines from Weill Cornell NY Presbyterian Hospital

Weight Loss

Troublesome skin rash

What’s going on ? Time for new treatment?

Cll the unexpected-surgery

Severe Neutropenia 2 months after reaching UMRD?

Treatment this week

My dad is newly diagnosed. ? About weight loss

CLL IN 40s

R-Chop failed with lymphoma, What's Next?

Ibrutinib and covid vaccine

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