Posts - CLL Support | HealthUnlocked

CLL Support

22,629 members • 38,856 posts

All posts for May 2021

Ciitizen

I saw someone mention about their concern on submitting driver's license or passport information online to Ciitizen, the organization that is coordinating the...

I saw someone mention about their concern on submitting driver's license or pass...

PSP52

•3 years ago

6 Replies

No Antibodies

My husband and myself are taking part in a National Office of Statistics study on which I and my husband are tested regularly for positivity of Covid19. Just...

My husband and myself are taking part in a National Office of Statistics study o...

kitchengardener2

•3 years ago

18 Replies

Question in general about CLL

Hello, new here. First off I'd like to wish everyone sustained health. Trying to gather some information on CLL as a family member has been diagnosed in...

Hello, new here. First off I'd like to wish everyone sustained health. Trying ...

Hidden

•3 years ago

4 Replies

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Update to my post about severe joint, muscle and bone pain

I wanted to update my post about severe joint, muscle and bone pain shortly after finishing last dose of obinutuzumab. I ended up at emergency a few days ago...

I wanted to update my post about severe joint, muscle and bone pain shortly afte...

Snorkeler2

•3 years ago

3 Replies

Iron overload??

Have a question. Ive had abdominal pain for months now, they can't figure out why. I've been left with having to fast for 16 hrs a day in order to not have the...

Have a question. Ive had abdominal pain for months now, they can't figure out wh...

Cfarrar

•3 years ago

13 Replies

In remission for CLL and COVID antibody test came back NEGATIVE

I have been told I am in remission for Chronic Lymphatic Leukemia (CLL). That's the good news. Recently I read on a CLL forum I'm on that many CLL patients,...

I have been told I am in remission for Chronic Lymphatic Leukemia (CLL). That's ...

jdolinger

•3 years ago

11 Replies

Does CLL treatment in the U.S. break the bank?

I am a 75 year old woman who has been at stage zero CLL since diagnosed 3 years ago. I’ve been reading about all the treatments that members of this group are...

I am a 75 year old woman who has been at stage zero CLL since diagnosed 3 years ...

Myfavoritecat

•3 years ago

31 Replies

You are invited to the next webinar: Thursday 20 May at 2.00pm London (10.00 am EST) Title: ‘Autoimmune complications of CLL'

Speaker: Dr. Helen Marr, Consultant Haematologist at the Freeman Hospital, Newcastle on Tyne. We know that CLL and SLL patients have compromised immune...

Speaker: Dr. Helen Marr, Consultant Haematologist at the Freeman Hospital, Newca...

pkguk2

Partner•3 years ago

2 Replies

Good webinar on Covid vaccines

Hi all, There have been a lot of questions here about Covid vaccines. Here is a new webinar on Covid vaccines in haematology patients including CLL. Dr Rob...

Hi all, There have been a lot of questions here about Covid vaccines. Here is...

guzzifan

•3 years ago

1 Reply

Follow Up on Dire Warning

He Y'all! My oncologist replied, "don't panic." She also shared a link that she says will be reassuring (I think she's right):...

He Y'all! My oncologist replied, "don't panic." She also shared a link that she ...

Jungle-Jim

•3 years ago

25 Replies

COVID antibody test

Been on w&w for three years my blood is getting slowly worse and have been prone to have prostrate infections. I have had my 2 doses of Astra Zeneca vaccine....

Been on w&w for three years my blood is getting slowly worse and have been prone...

Barney2866

•3 years ago

15 Replies

Safety from Covid when outside discussed

https://www.nytimes.com/2021/05/11/briefing/outdoor-covid-transmission-cdc-number.html?referringSource=articleShare If the link fails because I am using the...

https://www.nytimes.com/2021/05/11/briefing/outdoor-covid-transmission-cdc-numbe...

Yuck

•3 years ago

2 Replies

DIRE WARNING

I got my 1st COVID vax in Jan. 2021, and my 2nd in Feb. 2021. But since I've been reading a lot lately about the efficacy of COVID-19 vaccines with folks who...

I got my 1st COVID vax in Jan. 2021, and my 2nd in Feb. 2021. But since I've bee...

Jungle-Jim

•3 years ago

92 Replies

Does acalabrutnib cause nausea? I also have 2 kidney stones(4-5mg) in the ureter.

Nausea from acalabrutnib

Mackiec1108

•3 years ago

6 Replies

Lymphocytes

Can someone help my mom has 1,44 absolute lymphocytes count and 32% is this lymphpopenia some say the range is from 1 while others from 1,5 plz help

Can someone help my mom has 1,44 absolute lymphocytes count and 32% is this lymp...

Katmeg

•3 years ago

5 Replies

LLS Antibody Testing/No Labs available

I signed up on the LLS site to have blood drawn for the Antibody tests. However, there were no LabCorp Labs that showed up within a 100 mile radius. I live...

I signed up on the LLS site to have blood drawn for the Antibody tests. However,...

Cgolen99

•3 years ago

15 Replies

First Post about AIHA

Hi, Introducing myself, ( Charlie, 58 years young Male) I had an autoimmune disease ( PBC) hitch caused me to have a liver transplant in Nov 2014 .... a few...

Hi, Introducing myself, ( Charlie, 58 years young Male) I had an autoimmune dis...

PCBnPBC

•3 years ago

2 Replies

Losing weight constantly on Watch & Wait

I'm 63, reasonably fit, & was diagnosed in late 2020 & following a bone marrow biopsy (85% infiltration) & review of my bloods, it has been decided to start...

I'm 63, reasonably fit, & was diagnosed in late 2020 & following a bone marrow b...

Fergusaims

•3 years ago

6 Replies

Fever Spikes after covid vaccination?

About 2 weeks after my second covid shot, I developed spiking fevers (103F) which did not go away and took me to the ER upon advice of my oncologist. They kept...

About 2 weeks after my second covid shot, I developed spiking fevers (103F) whic...

Mumu1

•3 years ago

4 Replies

Australian current treatment legislation

Is it correct that in Australia currently for a SLL /CLL patient, if you are NOT 17p del but still unmutated igvh and mutated tp53 ( meaning FCR is unlikely...

Is it correct that in Australia currently for a SLL /CLL patient, if you are NO...

Waves01

•3 years ago

14 Replies

Severe Joint, Muscle and Bone Pain After Last Infusion of Obinutuzumab/Gazyva

I have SLL and started treatment on veneteclax and obinutuzumab last fall. I had a concerning " twitching" reaction after the 7th infusion of obinutuzumab but...

I have SLL and started treatment on veneteclax and obinutuzumab last fall. I had...

Snorkeler2

•3 years ago

8 Replies

Help needed to interpret report 🙏🏻🙏🏻🙏🏻

Hi Everyone, special shout-out to Jackie 🎤 My friend just received the attached report this morning; two months after V&O treatment. She is very anxious as...

Hi Everyone, special shout-out to Jackie 🎤 My friend just received the attache...

Seok

•3 years ago

4 Replies

Should you be minimizing your consumption of lipids?

I had my worst blood test on April 15 followed three weeks later (on May 5) by my best blood test in 15 months. The main difference was that my April 15 blood...

I had my worst blood test on April 15 followed three weeks later (on May 5) by m...

HowardR

•3 years ago

32 Replies

Good To Meet You

Hi, everyone. I've been lurking around for a while and thought I'd introduce myself. I am Jeremy. I am almost 40 and I've had CLL for the last 14 years or so....

Hi, everyone. I've been lurking around for a while and thought I'd introduce mys...

Jmiah717

•3 years ago

11 Replies

Covid and Pneumococcal vaccines

Hi Could someone please remind me of the suggested/recommended time interval between the Covid and Pneumococcal vaccines?

Hi Could someone please remind me of the suggested/recommended time interval bet...

RobertCLL

•3 years ago

5 Replies

to anybody with lower back pain.

My wife after suffering for years had rfa-radiofreqency ablation done, And it appears to have worked. . I finally have a happier wife. it;s not permanenent...

My wife after suffering for years had rfa-radiofreqency ablation done, And it a...

Smith123456

•3 years ago

29 Replies

Weight Loss

I'll preface this by saying that I probably should notify my Specialist; however, I don't want to do that before asking our group for their input. I don't...

I'll preface this by saying that I probably should notify my Specialist; however...

wizzard166

•3 years ago

30 Replies

Should FISH test be repeated?

Does anyone know if the FISH test is repeated for people with stage zero CLL? I had the test when I was first diagnosed in December 2017, and assume it hasn’t...

Does anyone know if the FISH test is repeated for people with stage zero CLL? I ...

Myfavoritecat

•3 years ago

2 Replies

My Antibody Test Was Negative Despite Pfizer Vaccine. I Am Wondering If I Should Try Another One.

I am two months into Ibrutinib, which is improving my blood counts with almost no side effects. Yay! I did not start Ibrutinib until after I was "fully...

I am two months into Ibrutinib, which is improving my blood counts with almost n...

cllboy

•3 years ago

26 Replies

Day Three Post-J&J

Hi Folks, I received the the J&J vax Friday morning at ten a.m. and I have to say, it’s been a rough ride. Still. Feel like I have a flu plus bone pain....

Hi Folks, I received the the J&J vax Friday morning at ten a.m. and I have to s...

Lily_Pad_Master

•3 years ago

25 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2021

Ciitizen

No Antibodies

Question in general about CLL

Update to my post about severe joint, muscle and bone pain

Iron overload??

In remission for CLL and COVID antibody test came back NEGATIVE

Does CLL treatment in the U.S. break the bank?

You are invited to the next webinar: Thursday 20 May at 2.00pm London (10.00 am EST) Title: ‘Autoimmune complications of CLL'

Good webinar on Covid vaccines

Follow Up on Dire Warning

COVID antibody test

Safety from Covid when outside discussed

DIRE WARNING

Does acalabrutnib cause nausea? I also have 2 kidney stones(4-5mg) in the ureter.

Lymphocytes

LLS Antibody Testing/No Labs available

First Post about AIHA

Losing weight constantly on Watch & Wait

Fever Spikes after covid vaccination?

Australian current treatment legislation

Severe Joint, Muscle and Bone Pain After Last Infusion of Obinutuzumab/Gazyva

Help needed to interpret report 🙏🏻🙏🏻🙏🏻

Should you be minimizing your consumption of lipids?

Good To Meet You

Covid and Pneumococcal vaccines

to anybody with lower back pain.

Weight Loss

Should FISH test be repeated?

My Antibody Test Was Negative Despite Pfizer Vaccine. I Am Wondering If I Should Try Another One.

Day Three Post-J&J

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