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CLL Support

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All posts for July 2020

Osteoarthritis returned now Ibrutinib stopped!

Lots of people have said their arthritis has got worse since being on Ibrutinib. After taking it for 9 months I stopped taking it 2 weeks ago and already my...

Lots of people have said their arthritis has got worse since being on Ibrutinib....

Jooby59

•4 years ago

11 Replies

Covid tests

Hi just returned from my monthly infusion at the local piu, to be told everyone needs a covid swab to be clear before the appointment. They said they would...

Hi just returned from my monthly infusion at the local piu, to be told everyone ...

Wiganmc

•4 years ago

4 Replies

Venetoclax started

Further to my recent post. I am pleased to say I am now home after my three days at RMH The team expected me to have TLS due to the size of my lymph nodes....

Further to my recent post. I am pleased to say I am now home after my three days...

aloneifly

•4 years ago

4 Replies

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Stopping ibrutinib before a dental visit.

I started ibrutinib in September 2019. The hematologist told me to stop ibrutinib 3-5 days before a dental visit because of bleeding. I have a dental...

I started ibrutinib in September 2019. The hematologist told me to stop ibrutini...

U2me

•4 years ago

10 Replies

How on Earth will they manage Flu injections in the UK?

Discussed this with a few people recently. The flu jab programme in surgeries has been a cause of much irritation over the last few years. Some practices have...

Discussed this with a few people recently. The flu jab programme in surgeries ha...

Harvist

•4 years ago

23 Replies

Would anyone know if it is a common practice to add more time to a 2 year clinical trial ?

My Ibrutrinib/Venetoclax trial was supposed to end in November I’m not complaining I am just a bit disappointed as once I had a mandatory 2 or 3 week...

My Ibrutrinib/Venetoclax trial was supposed to end in November I’m not complain...

Catnap7

•4 years ago

23 Replies

Support for treatment with Ibutinib

Diagnosis in 2012, treatment with GAZYVA in 2015. Now starting Ibutinib. July 2020 IgVh Unmutated 17p negative Mouth sores already!

Diagnosis in 2012, treatment with GAZYVA in 2015. Now starting Ibutinib. July ...

Tapps

•4 years ago

13 Replies

Change away from FCR

https://www.onclive.com/view/dr-ghia-on-the-shift-from-chemotherapy-to-novel-agents-in-cll&ct. I guess this is the general and hopefully costs will come...

https://www.onclive.com/view/dr-ghia-on-the-shift-from-chemotherapy-to-novel-age...

Research123

•4 years ago

1 Reply

4 weeks on Ibrutinib blood work has shown P53 Mutation

Hello and thanks in advance to anyone that replies to this. My mum is 70 and was diagnosed in 2008. She has just had a follow up phone call with the DR who has...

Hello and thanks in advance to anyone that replies to this. My mum is 70 and was...

mouseygirl

•4 years ago

24 Replies

CLL Society Dr. Koffman's ASCO 2020 "Top 12" Picks #s 12, 11, 10

Dr. Koffman’s ASCO 2020 “Top 12” Picks The 2020 Annual Meeting of the American Society of Clinical Oncology (ASCO) was held virtually in May. While ASCO...

Dr. Koffman’s ASCO 2020 “Top 12” Picks The 2020 Annual Meeting of the American S...

bkoffman

CLL CURE Hero•4 years ago

6 Replies

CLL/SLL Roundtable: Updates on Patient Management (including low dose radiation treatment for early stage SLL)

Joshua Brody, MD, Richard Bakst, MD, and Amir Steinberg, MD, of the Icahn School of Medicine at Mount Sinai, New York City, discuss updates on the management...

Joshua Brody, MD, Richard Bakst, MD, and Amir Steinberg, MD, of the Icahn School...

AussieNeil

Administrator•4 years ago

6 Replies

About to start Venetoclax- what to expect.

In RMH Sutton in the UK as an inpatient. Comfortable and well looked after. Had a PET scan and now hooked up to saline drip for hydration. Venetoclax ramp up...

In RMH Sutton in the UK as an inpatient. Comfortable and well looked after. Had ...

aloneifly

•4 years ago

25 Replies

Bad teeth and CLL

to have a tooth extracted is it necessary to stop Ibrutinib 3 days before and after the procedure.? And stop low dose aspirin for 7 days.

to have a tooth extracted is it necessary to stop Ibrutinib 3 days before and a...

oldguy68

•4 years ago

25 Replies

The good and the not so....

Just checking in to give my friends an update. I had results come back from my flow cytometry yesterday. Happy to say I am MRD negative and no cll cells...

Just checking in to give my friends an update. I had results come back from my ...

Downriver555

•4 years ago

20 Replies

Bilirubin high from imbruvica

I have been on imbruvica for 1 year, my numbers are back to some normalcy, but my bilirubin is up due to the imbruvica. Possibly switching to Calquence, has...

I have been on imbruvica for 1 year, my numbers are back to some normalcy, but m...

Tweetybird1962

•4 years ago

6 Replies

Newbie in search of knowledge

Hi following my first post I am grateful to everyone who replied in such supportive and welcoming ways. Somewhere along the line I think I read that one of the...

Hi following my first post I am grateful to everyone who replied in such support...

Happygarden

•4 years ago

3 Replies

Holiday to Greece

I am currently shielding. I have a holiday to Greece in August that I booked in 2019. Shielding is lifted on 1st August. I am now very worried about the CV...

I am currently shielding. I have a holiday to Greece in August that I booked in ...

Miggins60

•4 years ago

10 Replies

vit D and C

so year seven heading to year eight. Again year eight is or can be the turn point for cll. For myself getting these sepsis attacks have been a real pain in the...

so year seven heading to year eight. Again year eight is or can be the turn poin...

Tonnross

•4 years ago

Be the first to reply

Going back to work ...

Hello. I have been shielding since the 23 rd of march and I have followed the NHS advice to the letter. I wasn't fourloughed but my employers were brilliant to...

Hello. I have been shielding since the 23 rd of march and I have followed the NH...

mfc86

•4 years ago

2 Replies

Health unlocked not received

Ihave not received the email from hu for the last two months. Can you please investigate why not and put me back on the email list. Thanks Eile

Ihave not received the email from hu for the last two months. Can you please inv...

speedyone

•4 years ago

4 Replies

Quarantined

Hi. Just wondering how everyone is handleing this cornovirus? Is anyone's Dr. telling them they can't go anywhere, socialize at all even at 6 feet with a mask?...

Hi. Just wondering how everyone is handleing this cornovirus? Is anyone's Dr. te...

Dcfrey6450

•4 years ago

26 Replies

Blood result anxiety

Hi all I wondered if you would be so kind to offer your thoughts/guidance/advice. My mum was diagnosed with MBL in January this year . We seem to have been...

Hi all I wondered if you would be so kind to offer your thoughts/guidance/advic...

Elsie89

•4 years ago

5 Replies

Remission, Day 4: Online Dating Question

I'm leaving this post unlocked. I don't know if people from other communities in HealthUnlocked can see and reply, but if you can, please do from the...

I'm leaving this post unlocked. I don't know if people from other communities in...

Lily_Pad_Master

•4 years ago

81 Replies

Ibrutinib or venetoclax-obinutuzumab

Ibrutinib or venetoclax-obinutuzumab? This will be my first treatment option following CLL diagnosis. Thanks. Happy to provide specific numbers from my chart...

Ibrutinib or venetoclax-obinutuzumab? This will be my first treatment option fol...

Hidden

•4 years ago

16 Replies

Covid-like symptoms every 5 months so far.

This happened to me twice this year. Wanted to know if anyone out there has experienced Covid like symptoms, fever, cough, shortness of breath and wheezing....

This happened to me twice this year. Wanted to know if anyone out there has expe...

wondering1

•4 years ago

6 Replies

CLL treatment prognosis

Hi all, I was told at my consult this week that because of the way my CLL was - the word immature was used - that I would not be one of the lucky people who...

Hi all, I was told at my consult this week that because of the way my CLL was - ...

HarryMet

•4 years ago

4 Replies

CLL and exercise article

https://medicalxpress.com/news/2020-07-prescription-cancer.html I came across this article. It surprises me the docs don't talk more about exercise for us lot....

https://medicalxpress.com/news/2020-07-prescription-cancer.html I came across th...

Research123

•4 years ago

28 Replies

CLL and Melanoma

Quick update. Post op appt was Wednesday and my sentinel lymph node biopsy was discussed. Unfortunately there was a small amount of melanoma present in a lymph...

Quick update. Post op appt was Wednesday and my sentinel lymph node biopsy was d...

Estate1

•4 years ago

2 Replies

Chronic pain in my groin and down my leg. Can lymph nodes press on nerves??

Hi guys. Does anyone struggle with shocking pain in their groin or nerve pain down their leg?? I have Cll but have also had back surgery and groin surgery in...

Hi guys. Does anyone struggle with shocking pain in their groin or nerve pain d...

ChuckyB

•4 years ago

14 Replies

Would Imbruvica lower immunity levels? For how long?

As I heard that one important side effect is that we are prone to serious infections

As I heard that one important side effect is that we are prone to serious infect...

AshGS

•4 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2020

Osteoarthritis returned now Ibrutinib stopped!

Covid tests

Venetoclax started

Stopping ibrutinib before a dental visit.

How on Earth will they manage Flu injections in the UK?

Would anyone know if it is a common practice to add more time to a 2 year clinical trial ?

Support for treatment with Ibutinib

Change away from FCR

4 weeks on Ibrutinib blood work has shown P53 Mutation

CLL Society Dr. Koffman's ASCO 2020 "Top 12" Picks #s 12, 11, 10

CLL/SLL Roundtable: Updates on Patient Management (including low dose radiation treatment for early stage SLL)

About to start Venetoclax- what to expect.

Bad teeth and CLL

The good and the not so....

Bilirubin high from imbruvica

Newbie in search of knowledge

Holiday to Greece

vit D and C

Going back to work ...

Health unlocked not received

Quarantined

Blood result anxiety

Remission, Day 4: Online Dating Question

Ibrutinib or venetoclax-obinutuzumab

Covid-like symptoms every 5 months so far.

CLL treatment prognosis

CLL and exercise article

CLL and Melanoma

Chronic pain in my groin and down my leg. Can lymph nodes press on nerves??

Would Imbruvica lower immunity levels? For how long?

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