Posts - CLL Support | HealthUnlocked

CLL Support

23,139 members • 39,744 posts

All posts for August 2020

Shingrex?

I am due for a booster shot for shingrex tomorrow. I in formed my doctor today and she advised me against it, the last doctors appointment was with a different...

I am due for a booster shot for shingrex tomorrow. I in formed my doctor today a...

Moqua

•4 years ago

35 Replies

Acalabrutinib query

Hi, I’ve just been told that I will be put on acalabrutinib ....this will be the first treatment i have received as up until now I have been on watch and wait....

Hi, I’ve just been told that I will be put on acalabrutinib ....this will be the...

Cheeseandchips

•4 years ago

25 Replies

Final week of Venetoclax ramp up

Yesterday I took my first 400mg of Venetoclax - ramp up has been going well but with a few side effects. Last week’s blood test showed my sodium levels had...

Yesterday I took my first 400mg of Venetoclax - ramp up has been going well but ...

Jooby59

•4 years ago

8 Replies

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Hospital appointment

A bit of reassurance needed here please. During lockdown a breast lump appeared, not actually in the breast but to the side. It felt like a lymph node so I...

A bit of reassurance needed here please. During lockdown a breast lump appeared,...

Pinkdark2018

•4 years ago

7 Replies

Question about lymph nodes

To the people with SSL representation, how do your lymph nodes feel when you palpate them?...

To the people with SSL representation, how do your lymph nodes feel when you pal...

Dgdr

•4 years ago

22 Replies

Study on covid/CLL

Study on covid/CLL https://www.targetedonc.com/view/covid-19-severity-in-cll-correlates-with-3-disease-characteristics

Study on covid/CLL https://www.targetedonc.com/view/covid-19-severity-in-cll-cor...

Research123

•4 years ago

3 Replies

Schematic for CLL treatment?

Is there a decision chart or list of questions somewhere on this forum for how docs make their decisions?(am not talking the nhs system who seem to just offer...

Is there a decision chart or list of questions somewhere on this forum for how d...

Research123

•4 years ago

10 Replies

Night sweats

How to tell the difference between night sweats and hot flashes

ANA4

•4 years ago

7 Replies

Final treatment free day

I have one last day before starting FCR. The to do list includes a coastal bike ride, a conquer of a hill and the making of a large Sherry trifle plus a full...

I have one last day before starting FCR. The to do list includes a coastal bike ...

HarryMet

•4 years ago

17 Replies

Leg lumps

I am on the Flair Trial Ibrutinib/venetoclax for about 20 months had numerous side effects all manageable however these last few months I have developed a...

I am on the Flair Trial Ibrutinib/venetoclax for about 20 months had numerous s...

Farmers

•4 years ago

2 Replies

UK CLL Forum - updated post lockdown guidance for the management of CLL

During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown...

During the height of the COVID19 pandemic the UK CLL Forum issued guidance on ma...

Jm954

Administrator•4 years ago

13 Replies

How to tell young children

Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38)....

Hi, my husband is in the stages of being confirmed to have CLL. He already has C...

Savage27

•4 years ago

8 Replies

Mask anger

This post is partly inspired by a recent posting about masks in supermarkets. It unfortunately won't show me in a particularly good light but I feel a need to...

This post is partly inspired by a recent posting about masks in supermarkets. It...

ornstin

•4 years ago

75 Replies

Rituxan

Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of...

Hi everybody! I had an infusion today, and my doctor said my lymph nodes are ge...

Vintagemama

•4 years ago

6 Replies

Abbreviations?

Hi, I am new to this forum and would like to know the correct terms for all your abbreviations, if possible? Thank you in advance, Michael

Hi, I am new to this forum and would like to know the correct terms for all your...

Moqua

•4 years ago

5 Replies

They're off! Now how long is the course?

A comprehensive tracker of runners and riders in the Covid19 Stakes - worth adding to Favourites!...

A comprehensive tracker of runners and riders in the Covid19 Stakes - worth addi...

bennevisplace

•4 years ago

1 Reply

Why won’t my post go? Keep talking

Every time I want to post something on this site a message comes up saying I can’t. Can you help please.

Every time I want to post something on this site a message comes up saying I can...

keeptalking

•4 years ago

4 Replies

Ibrutinib and Tylenol with codeine

Beastly toothache for 4 days and extra strength Tylenol isn't doing a thing to cut the pain. Can I safely take Tylenol with codeine until I am able to get...

Beastly toothache for 4 days and extra strength Tylenol isn't doing a thing to c...

Imbub

•4 years ago

11 Replies

Cataract Operation

Currently taking Imbrutinb and my bloods are good. Most operations require you abstain from taking Imbrutinb typically for seven...

Currently taking Imbrutinb and my bloods are good. M...

fossicker

•4 years ago

7 Replies

Hello, I'm new and happy to have come across Health Unlocked.

I was diagnosed with CLL in 2011 and after a relapse my hematologist started me late May on Acalabrutinib (Calquence). Initially I had issues with oral blood...

I was diagnosed with CLL in 2011 and after a relapse my hematologist started me ...

Drago1941

•4 years ago

28 Replies

The coronavirus is mutating, no cause for alarm...but keep an eye on D614G

This is a good readable summary. https://www.abc.net.au/news/health/2020-08-15/coronavirus-new-strains-mutation-vaccine-headlines/12519576

This is a good readable summary. https://www.abc.net.au/news/health/2020-08-15/c...

bennevisplace

•4 years ago

8 Replies

SF3B1 Mutations

We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are...

We've had a couple of members mention that they are positive for SF3B1 Mutation...

Jm954

Administrator•4 years ago

17 Replies

Excited

Hi, I would like to share my excitement with you all .I have been on Venetoclax and Ibrutanib for 18 months now and have just been told my bone marrow and...

Hi, I would like to share my excitement with you all .I have been on Venetoclax ...

Workers

•4 years ago

65 Replies

FCR oral versus iv

Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral...

Hi I have read that cyclophosphamide and fludarabine can be given orally instead...

CarpeDiem03

•4 years ago

20 Replies

Worried About Your CLL? A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! (Applies to USA Residents only)

https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - We...

https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Pro...

lankisterguy

Volunteer•4 years ago

2 Replies

Is It Time to Treat Your CLL? What You Need to Know

Topic: Is It Time to Treat Your CLL? What You Need to Know Description: When it’s time to move forward with a chronic lymphocytic leukemia (CLL) treatment...

Topic: Is It Time to Treat Your CLL? What You Need to Know Description: When...

lankisterguy

Volunteer•4 years ago

12 Replies

Venetoclax Weight Gain

i have just finished my sixth week on Venetoclax. My initial bloodwork results are astoundingly good, seems it has taken us 8 years to find the right drug....

i have just finished my sixth week on Venetoclax. My initial bloodwork result...

KevinCLLITP

•4 years ago

25 Replies

Coronavirus Podcast Trilogy

This is the first of three podcasts covering the topic of the Coronavirus. Prof John Potter is an excellent communicator of scientific information. He is also...

This is the first of three podcasts covering the topic of the Coronavirus. Prof ...

seelel

•4 years ago

9 Replies

Does FCR cause hair loss?

Drear group Does FCR cause hairs doss? And is FCR pain full ? Thank you

Nour80Leen2011

•4 years ago

14 Replies

Hair loss on Ibrutinib

I started taking Ibrutinib on July 4th. I also started taking 10,000 mg of Biotin. My hair seems to be breaking off. Is this a temporary side effect or a...

I started taking Ibrutinib on July 4th. I also started taking 10,000 mg of Bioti...

Kyranbigeyes

•4 years ago

30 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2020

Shingrex?

Acalabrutinib query

Final week of Venetoclax ramp up

Hospital appointment

Question about lymph nodes

Study on covid/CLL

Schematic for CLL treatment?

Night sweats

Final treatment free day

Leg lumps

UK CLL Forum - updated post lockdown guidance for the management of CLL

How to tell young children

Mask anger

Rituxan

Abbreviations?

They're off! Now how long is the course?

Why won’t my post go? Keep talking

Ibrutinib and Tylenol with codeine

Cataract Operation

Hello, I'm new and happy to have come across Health Unlocked.

The coronavirus is mutating, no cause for alarm...but keep an eye on D614G

SF3B1 Mutations

Excited

FCR oral versus iv

Worried About Your CLL? A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! (Applies to USA Residents only)

Is It Time to Treat Your CLL? What You Need to Know

Venetoclax Weight Gain

Coronavirus Podcast Trilogy

Does FCR cause hair loss?

Hair loss on Ibrutinib

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