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CLL Support

22,532 members • 38,709 posts

All posts for August 2021

Be Careful Out There

After remaining away from family gatherings since the world fell apart, I was about to attend a family gathering this past weekend. Although is was outdoors...

After remaining away from family gatherings since the world fell apart, I was ab...

jerard59

•3 years ago

3 Replies

I am new here and about to start venetoclax/rituximab treatment.

CLL diagnosed in 2012. No treatment for CLL so far other than rituximab to treat haemolytic anemia. My question is: Having just completed 4 weekly doses of...

CLL diagnosed in 2012. No treatment for CLL so far other than rituximab to treat...

RamsesII

•3 years ago

14 Replies

Vaccine Adverse Events

Interesting graphic. Vaccines are worse than SARS-CoV-2 for lymphadenopathy and no other common adverse events. - Eric Topol

Interesting graphic. Vaccines are worse than SARS-CoV-2 for lymphadenopathy and...

whmk

•3 years ago

35 Replies

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Lateral Flow Tests Timings (UK)

I tried to find the answer online but was unsuccessful. My question is, on day 1 you are exposed to covid, how long would it be for a lateral flow test to show...

I tried to find the answer online but was unsuccessful. My question is, on day 1...

RobertCLL

•3 years ago

5 Replies

Recently diagnosed

I have my first appointment next Tuesday with a Haematologist. I had Bowel surgery on 30th June for a stricture and now have a permanent Colostomy. Biopsies...

I have my first appointment next Tuesday with a Haematologist. I had Bowel surge...

Jam53

•3 years ago

5 Replies

Teacher with Leukemia dies for COVID

This is a very sad outcome when people refuse vaccines for non-medical reasons:...

This is a very sad outcome when people refuse vaccines for non-medical reasons:....

whmk

•3 years ago

32 Replies

Wait time after 2nd vaccine for booster jab

How long after receiving the first two Pfizer or Moderna jabs is the wait period before getting the third booster jab?

How long after receiving the first two Pfizer or Moderna jabs is the wait period...

CCgroup

•3 years ago

6 Replies

CT scan after 9 weeks of Obi +Ventoclax. Is this normal practice in the UK?

I started Obinutuzamab on 29th June & have introduced Ventoclax last week to the 400 mg ramp up max. aside from the normal day1 problems with Obi & have had...

I started Obinutuzamab on 29th June & have introduced Ventoclax last week to the...

Fergusaims

•3 years ago

20 Replies

Mum starting Calquence in 10 days

My mum starting Calquence in 10 days - be brilliant to hear positive stories :) Also she is probably going to have an operation i spring 2022 so interested...

My mum starting Calquence in 10 days - be brilliant to hear positive stories :) ...

Dazt

•3 years ago

4 Replies

Monoclonal Antibodies Treatments

Does anyone have any idea of the status of giving monoclonal antibodies as protection for those with no antibodies from the vaccine. Is this something that...

Does anyone have any idea of the status of giving monoclonal antibodies as prote...

Lindaan

•3 years ago

3 Replies

Pfizer vaccine response tests four months apart

I am participating in the LLS vaccine response study. I have CLL and I am taking Acalabrutinib. One month after my second Pfizer vaccine shot, on April 20th I...

I am participating in the LLS vaccine response study. I have CLL and I am taking...

zsuzsiB

•3 years ago

2 Replies

Vitamins and supplements

Any advice or cautions on using these vitamins and supplements?

210savannah

•3 years ago

2 Replies

mRNA vaccine research actually began in 1961

Vaccine hesitancy in the US has helped to fuel the spread of Covid-19. One of the most common reasons many refuse the vaccine is that they believe it was...

Vaccine hesitancy in the US has helped to fuel the spread of Covid-19. One of th...

neurodervish

•3 years ago

7 Replies

Encouraging

https://www.thetimes.co.uk/article/coronavirus-two-fifths-of-people-with-poor-immunity-have-little-or-no-antibodies-after-jabs-j2rvfhrnc

https://www.thetimes.co.uk/article/coronavirus-two-fifths-of-people-with-poor-im...

Hidden

•3 years ago

13 Replies

Feverfew Flower compound a potential cure?

Hello! Has anyone got info/experience with Feverfew flower as a potential treatment for CLL?...

Hello! Has anyone got info/experience with Feverfew flower as a potential treat...

nuji

•3 years ago

10 Replies

Anyone here on Duvelisib (Copiktra) or has taken it in the past, particularly from the UK?

NICE (for NHS England) has been asked to appraise Duvelisib for the treatment of relapsed or refractoryCLL/SLL following at least two previous therapies. We...

NICE (for NHS England) has been asked to appraise Duvelisib for the treatment of...

Jm954

Administrator•3 years ago

Be the first to reply

French research on the most grave Covid

Interesting post I found just now and wondered how it might be affected by CLL ..has anyone else seen anything about this? By O.S.F. Posted on 08/23/2021 at...

Interesting post I found just now and wondered how it might be affected by CLL ....

RosettaClapp

•3 years ago

5 Replies

What to expect now that CLL diagnosis has been confirmed?

Hi everyone, I've posted here before when I first found out about my dad's CLL diagnosis and everyone has been so kind in providing their personal experiences....

Hi everyone, I've posted here before when I first found out about my dad's CLL d...

Rubymom

•3 years ago

4 Replies

Forming a CLL support group in southeast florida

Hi, everyone- it’s been a while. I wondered if anyone would be interested in forming a CLL support group one in which we could meet, share and help each other....

Hi, everyone- it’s been a while. I wondered if anyone would be interested in for...

LisaAlice

•3 years ago

13 Replies

THIRD SHOT BUT NO LUCK

This post is only to update many of you; since, I have posted a good bit about getting a third shot before it was approved. My first two were Moderna in...

This post is only to update many of you; since, I have posted a good bit about g...

wizzard166

•3 years ago

22 Replies

Not for CLL but…

The FDA will decide on October 1st whether or not to approve a Gilead CAR-T treatment for refractory B-cell precursor Acute Lymphoblastic Leukemia. If nothing...

The FDA will decide on October 1st whether or not to approve a Gilead CAR-T trea...

Luap001

•3 years ago

1 Reply

Pfizer buys a company

They bought Trillium. I mention this because this company has a few blood cancer treatments in its pipeline including one that targets TP-53 mutation but for...

They bought Trillium. I mention this because this company has a few blood cancer...

Luap001

•3 years ago

2 Replies

Withdrawl symptoms

What experiences do you have with different drugs I know Ibrutinib can cause this once you are off the drug. Would like some Feedback

What experiences do you have with different drugs I know Ibrutinib can cause thi...

mickimauser11

•3 years ago

9 Replies

IGIV/SCIG and Low IgA

This is a follow-up question re: IGIV therapy. My IgG dropped from 451 to 383 in 17 months. My IgA level dropped from 27 to 17 during the same period. I've...

This is a follow-up question re: IGIV therapy. My IgG dropped from 451 to 383 in...

Jungle-Jim

•3 years ago

25 Replies

Irregular heart beat

Irregular heart beat issues. Anyone taking anything for it?

Gretsch6120

•3 years ago

2 Replies

Cll and Ulcer Colitis

Hi everyone, I’m about to have my first treatment for cll. I also have ulcer colitis. Has anyone else had the same situation? Be good to hear feedback on any...

Hi everyone, I’m about to have my first treatment for cll. I also have ulcer col...

Driverps1

•3 years ago

4 Replies

Can Venetoclax be used again if relapse?

Can someone go back on Venetoclax after the Murano trial? It's been a year and starting to get tired again and sore neck and armpits. Wondering if it's coming...

Can someone go back on Venetoclax after the Murano trial? It's been a year and s...

Mav74

•3 years ago

12 Replies

Can Ibrutinib be Paused 1 Year for pregnancy ?

2018 I got SLL now I'm 27. is it possible to Pause Ibrutinib for a year to try getting pregnant or not? Did it Happen before for someone my age?

2018 I got SLL now I'm 27. is it possible to Pause Ibrutinib for a year to try ...

Sally_LuLi

•3 years ago

4 Replies

Blacks eyes without injury

Had to go off treatment due to liver problems a few months ago. Have another ivig treatment soon. Just noticed I have bruises under and beside my eyes. Has...

Had to go off treatment due to liver problems a few months ago. Have another ivi...

Porter01

•3 years ago

9 Replies

Alternative/natural treatment

Anyone here have any success with natural treatments?

LadyWingshot

•3 years ago

34 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2021

Be Careful Out There

I am new here and about to start venetoclax/rituximab treatment.

Vaccine Adverse Events

Lateral Flow Tests Timings (UK)

Recently diagnosed

Teacher with Leukemia dies for COVID

Wait time after 2nd vaccine for booster jab

CT scan after 9 weeks of Obi +Ventoclax. Is this normal practice in the UK?

Mum starting Calquence in 10 days

Monoclonal Antibodies Treatments

Pfizer vaccine response tests four months apart

Vitamins and supplements

mRNA vaccine research actually began in 1961

Encouraging

Feverfew Flower compound a potential cure?

Anyone here on Duvelisib (Copiktra) or has taken it in the past, particularly from the UK?

French research on the most grave Covid

What to expect now that CLL diagnosis has been confirmed?

Forming a CLL support group in southeast florida

THIRD SHOT BUT NO LUCK

Not for CLL but…

Pfizer buys a company

Withdrawl symptoms

IGIV/SCIG and Low IgA

Irregular heart beat

Cll and Ulcer Colitis

Can Venetoclax be used again if relapse?

Can Ibrutinib be Paused 1 Year for pregnancy ?

Blacks eyes without injury

Alternative/natural treatment

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