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CLL Support

22,532 members • 38,709 posts

All posts for July 2020

Itching

I was diagnosed in 2017 with CLL and am on watch and wait since then. On July 1 2020 I started itching all over my body and so bad that I scratch till I...

I was diagnosed in 2017 with CLL and am on watch and wait since then. On July 1...

Txnocally

•4 years ago

28 Replies

Ibrutanib and BP

Can I ask a question regarding Ibrutanib? I'm coming to the end of my first month at 420mg per day. This last week or so I have noticed getting light headed...

Can I ask a question regarding Ibrutanib? I'm coming to the end of my first mont...

Nicebaps

•4 years ago

28 Replies

Pneumonia shots and Ibutinib treatment, should I get the shots?

Are Pneumonia shots recommended for patients under treatment with Ibutinib?

Tapps

•4 years ago

12 Replies

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Hip Joint Pain

I've been on 420 mg of Ibrutinib for about 5 years, and I've had some the usual side effects such as brittle nails, mouth sores, fungal infections, and...

I've been on 420 mg of Ibrutinib for about 5 years, and I've had some the usual ...

michaeledward

•4 years ago

7 Replies

ClassyLady3 introduction

Just learned about this group. I have CLL/SLL for 7 years without treatment. I am new on Imbruvica, and have had some side effects. The drug is working,...

Just learned about this group. I have CLL/SLL for 7 years without treatment. I a...

ClassyLady3

•4 years ago

16 Replies

Never-ending cycle of hope and disappointment.

My lovely OH is currently in Rehab in Toulouse, S France. He's been in hospital for over 16 weeks. He got Covid19 - we are ski instructors, he's managed to...

My lovely OH is currently in Rehab in Toulouse, S France. He's been in hospital...

shoppingtrolley

•4 years ago

30 Replies

Can Venetoclax/Obinituzimab reduce the risk of additional somatic mutations? - Not necessarily. The BTK inhibitors are excellent at....

Below is a repost from CLLSLL@groups.io ( permission granted by Dr. Furman) - I believe this hypothesis may be tested in a proposed clinical trial Dr. Furman...

Below is a repost from CLLSLL@groups.io ( permission granted by Dr. Furman) - I...

lankisterguy

Volunteer•4 years ago

26 Replies

Blood count bio chemistry question.

In RMH Sutton on 50mg Venetoclax. My bio chemistry abnormalities are Potassium 3.1. Glucose 3.9 Albumin 24 Calcium 1.68. How do those figures sound?

In RMH Sutton on 50mg Venetoclax. My bio chemistry abnormalities are Potassium ...

aloneifly

•4 years ago

2 Replies

Third Time Lucky????

Next Monday, I have been booked in to start my long delayed Venetoclax therapy. The 1st start was arranged for December last year but it was postponed because...

Next Monday, I have been booked in to start my long delayed Venetoclax therapy. ...

jaypax

•4 years ago

6 Replies

Treatment for COVID patients.

My thanks to everyone regarding my doctor not wanting to test me if I become infected. I have an appointment next week and I plan to talk with him to get...

My thanks to everyone regarding my doctor not wanting to test me if I become inf...

Professors

•4 years ago

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CLL / SLL

Still new to this SLL/CLL as I was diagnosed two month ago. Doctor said it is more of SLL than CLL since my CBC counts are within the normal limits. I am on...

Still new to this SLL/CLL as I was diagnosed two month ago. Doctor said it is m...

Egypt58

•4 years ago

13 Replies

Resistance-Associated Mutations in CLL Patients Treated With Novel Agents

This is slightly complex but good overview of the acquired resistance mechanisms to novel agents. In 80% of patients with ibrutinib failure, acquired mutations...

This is slightly complex but good overview of the acquired resistance mechanisms...

Jm954

Administrator•4 years ago

31 Replies

Bethlizzie

I have had CLL for about 2years! Watch and Wait! I seem to regularly produce enlarged lymph nodes and a CA 125 test which lead to ? Diagnosis of ovarian...

I have had CLL for about 2years! Watch and Wait! I seem to regularly produce en...

Artygolf

•4 years ago

3 Replies

HIGH MCV

Hi All, Hope all is staying safe and well. I had my Blood work the other day and noticed my MCV was high 101. Has anyone else had a high MCV and what does it...

Hi All, Hope all is staying safe and well. I had my Blood work the other day an...

Carrievc

•4 years ago

14 Replies

plantar fasciitis - corticosteroid

I have had plantar fasciitis for about 12 months and in that time have had one injection of a corticosteroid in the heal of the foot. The pain is now...

I have had plantar fasciitis for about 12 months and in that time have had one i...

RobertCLL

•4 years ago

44 Replies

Turning over a new ‘Leaf’ ?

Hello .. Sadly another ‘miserable’ headline in this mornings ‘Telegraph’ - ‘A new mutation of Covid-19 is now the most dominant strand of the virus globally...

Hello .. Sadly another ‘miserable’ headline in this mornings ‘Telegraph’ - ‘A ne...

Juliette02

•4 years ago

3 Replies

YOUR OPINION PLEASE - LONGER TERM REMISSION WITH IBRUTINIB OR SHORTER TERM WITH MORE TRADITIONAL TREATMENTS THAT HAVE LESS SIDE EFFECTS?

Hi all, back again. Husband doing great after treatment for AIHA. As I suspected since back in hands of our original doctor, he wants to start immediately on...

Hi all, back again. Husband doing great after treatment for AIHA. As I suspected...

Palmetto

•4 years ago

11 Replies

Ultra V - Cycle 2

Another quick and luckily boring update. Husband had day 1 infusion of Cycle 2 for Ultra V today. Cycle 1 passed pretty quickly with very little side...

Another quick and luckily boring update. Husband had day 1 infusion of Cycle 2...

WDSmith

•4 years ago

18 Replies

Outcomes of COVID-19 in Patients with CLL: A Multicenter, International Experience

This is the full report from ASH Publications Blood Journam yesterday by Dr Mayo et al. https://doi.org/10.1182/blood.2020006965...

This is the full report from ASH Publications Blood Journam yesterday by Dr Mayo...

Jm954

Administrator•4 years ago

76 Replies

Rash Side Effect. Imbruvica

Facial skin rash. Imbruvica

obtom2

•4 years ago

12 Replies

Help with format

Hi has anyone else’s format of this site changed in the last 2 weeks? I’m finding it very difficult to use on my Ipad

Hi has anyone else’s format of this site changed in the last 2 weeks? I’m findin...

Notmuchenergy

•4 years ago

2 Replies

Anyone else experiencing crushing headaches with this disease?

Just wondering if anyone else is experiencing severe headaches in addition to their cll diagnosis? Any ideas if they are common with CLL? My...

Just wondering if anyone else is experiencing severe headaches in addition to th...

sbkris1

•4 years ago

7 Replies

Fundraising from lockdown savings

I'm Braving the Shave for Macmillan tomorrow. I've missed out on three haircuts, so I donated that. Our charities can do with all the support we can give them.

I'm Braving the Shave for Macmillan tomorrow. I've missed out on three haircuts,...

knittingjardin

•4 years ago

2 Replies

Study on Covid for people with CLL

https://www.ajmc.com/newsroom/age-recent-treatment-appear-to-influence-severity-of-covid19-in-patients-with-cll It seems the good news is that the medicines...

https://www.ajmc.com/newsroom/age-recent-treatment-appear-to-influence-severity-...

Research123

•4 years ago

4 Replies

Watch and Wait Advice Needed please

Hi all, Hope you are keeping safe and well. My Dad, aged 79 is on W&W, but has recently been having some joint pain and episodes of feeling a bit more tired....

Hi all, Hope you are keeping safe and well. My Dad, aged 79 is on W&W, but has r...

ButterflyRose

•4 years ago

15 Replies

ANC very low

Hi I got my blood taken and I had a CAT scan on my lungs because they had found a shadow and it came out that it’s growing a little bit.. going to repeat test...

Hi I got my blood taken and I had a CAT scan on my lungs because they had found ...

littledab

•4 years ago

10 Replies

TESTING FOR COVID: a warning

Just wanted to tell you about my experience of being tested for COVID 19. Because I had symptoms (in fact it's just bronchitis), I went to have the dreaded...

Just wanted to tell you about my experience of being tested for COVID 19. Becaus...

CarmenfromParis

•4 years ago

7 Replies

Richter transformation after quitting ibrutinib: a diagnostic error

Hi all. The topic of the connection between Ibrutinib and the Richter transformation is getting very interesting. In the group that I have on Facebook every...

Hi all. The topic of the connection between Ibrutinib and the Richter transforma...

Priss69

•4 years ago

27 Replies

Drinking water whilst on Venetoclax

Little bit confused. How many litres a water is necessary each day? I am on day 4 of week one so initial dose. Do I need to drink copious amounts of water for...

Little bit confused. How many litres a water is necessary each day? I am on day...

aloneifly

•4 years ago

20 Replies

BUPA continuation agreements

Has anyone ever had a private employer Bupa plan transfer to personal, and what was the status to continue to cover cancer?

Has anyone ever had a private employer Bupa plan transfer to personal, and what ...

809123

•4 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2020

Itching

Ibrutanib and BP

Pneumonia shots and Ibutinib treatment, should I get the shots?

Hip Joint Pain

ClassyLady3 introduction

Never-ending cycle of hope and disappointment.

Can Venetoclax/Obinituzimab reduce the risk of additional somatic mutations? - Not necessarily. The BTK inhibitors are excellent at....

Blood count bio chemistry question.

Third Time Lucky????

Treatment for COVID patients.

CLL / SLL

Resistance-Associated Mutations in CLL Patients Treated With Novel Agents

Bethlizzie

HIGH MCV

plantar fasciitis - corticosteroid

Turning over a new ‘Leaf’ ?

YOUR OPINION PLEASE - LONGER TERM REMISSION WITH IBRUTINIB OR SHORTER TERM WITH MORE TRADITIONAL TREATMENTS THAT HAVE LESS SIDE EFFECTS?

Ultra V - Cycle 2

Outcomes of COVID-19 in Patients with CLL: A Multicenter, International Experience

Rash Side Effect. Imbruvica

Help with format

Anyone else experiencing crushing headaches with this disease?

Fundraising from lockdown savings

Study on Covid for people with CLL

Watch and Wait Advice Needed please

ANC very low

TESTING FOR COVID: a warning

Richter transformation after quitting ibrutinib: a diagnostic error

Drinking water whilst on Venetoclax

BUPA continuation agreements

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