Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for April 2020

Valtrex?

Hi everybody, I’m currently 2 months into O + V treatment; it’s going well, no side effects, bloodwork good. My doctor said I’m not at high risk, but he’ll...

Hi everybody, I’m currently 2 months into O + V treatment; it’s going well, no...

DRM18

•4 years ago

18 Replies

I found this during Covid lockdown but NOT because of it.

Probably one of the neatest apps I’ve ever seen. It’s fun & free. Zoom in on the green dots or your street. 😀 Open the following link. You will see the...

Probably one of the neatest apps I’ve ever seen. It’s fun & free. Zoom in on the...

Sepsur

•4 years ago

28 Replies

Timelines:plastic (3days) glass (5)

https://www.usatoday.com/in-depth/news/2020/03/25/coronavirus-survives-on-metal-plastic-cardboard-common-objects/2866340001/ Great chart and article for...

https://www.usatoday.com/in-depth/news/2020/03/25/coronavirus-survives-on-metal-...

Yuck

•4 years ago

18 Replies

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Shielding letters update

On today’s 5pm briefing Prof Whitty said rest of letters going out between today and end of week Also said may be some who get letters and don’t want to be...

On today’s 5pm briefing Prof Whitty said rest of letters going out between toda...

Jsk1950

•4 years ago

12 Replies

Canada begins clinical trial of experimental COVID-19 treatment using plasma from recovered individuals

A team of blood transfusion experts from across Canada is planning the world’s largest clinical trial of a potential treatment for COVID-19. The study, which...

A team of blood transfusion experts from across Canada is planning the world’s l...

Jm954

Administrator•4 years ago

6 Replies

Umbralisib & Ibrutinib Clinical Trial

Please message me if you are also in this very small U.S. trial run out of Dana Farber in Boston, but at others sites too. Thank you! ~ Yuck

Please message me if you are also in this very small U.S. trial run out of Dana ...

Yuck

•4 years ago

3 Replies

How Safe are Grocery Deliveries ?

I am at the W&W stage of CLL. We have managed to get deliveries booked with Tesco. But how safe will the good be that are delivered ? What is best practice ?...

I am at the W&W stage of CLL. We have managed to get deliveries booked with Tesc...

FairweatherSailor

•4 years ago

9 Replies

CLL Society's Expert Access Online Free 2nd Opinion/ No office visit involved

These days, when home is safer than the CLL doctor's office, an online HIPPA-compliant Expert 2nd Opinion from CLL Society's Access Program is just what you...

These days, when home is safer than the CLL doctor's office, an online HIPPA-com...

bkoffman

CLL CURE Hero•4 years ago

Be the first to reply

I'm new here; question about ibrutinib and rash

Unfortunately, I had to start treatment with Ibrutinib on March 8 2020, after 3 years of watch and wait. Two weeks after starting the Ibrutinib I broke out in...

Unfortunately, I had to start treatment with Ibrutinib on March 8 2020, after 3 ...

CDavis

•4 years ago

6 Replies

Bone Marrow Biopsy Options?

It seems a bone marry biopsy is the "gold standard" for determining RMD. Are there any less invasive (painful) options to a BMB? Thanks

It seems a bone marry biopsy is the "gold standard" for determining RMD. Are the...

CLLBGone

•4 years ago

64 Replies

Skin manifestations of COVID19

Skin manifestations were observed in about one-fifth of a group of patients with COVID-19 in the Alessandro Manzoni Hospital in Lecco, in northern Italy. Of 88...

Skin manifestations were observed in about one-fifth of a group of patients with...

Jm954

Administrator•4 years ago

8 Replies

Go to the hospital with Covid or not?

I have some decisions to make. In the US can I leave the hospital once in ICU to die at home? Many hospitals are allowing no visitors. I have CLL, COPd, RA,...

I have some decisions to make. In the US can I leave the hospital once in ICU t...

Pamer

•4 years ago

15 Replies

Neck pain

Hi All, I was diagnosed with CLL in October 2019 and stumbled across this site. It has been a great source of information for me. I’m on watch and wait but...

Hi All, I was diagnosed with CLL in October 2019 and stumbled across this site. ...

Pav545

•4 years ago

4 Replies

Superfoods

Do the super immunity boosting foods such as: Red bell pepper Garlic Spinach Chick peas Broccoli Have any benefit to people with CLL? Thanks Steve

Do the super immunity boosting foods such as: Red bell pepper Garlic Spinach Chi...

steve_canada

•4 years ago

19 Replies

Tocilizumab may be Helpful for the Cytokine Storm if our Immune Systems over react to COVID19

The 42-year-old man arrived at a hospital in Paris on March 17 with a fever, cough and the “ground glass opacities” in both lungs that are a trademark of...

The 42-year-old man arrived at a hospital in Paris on March 17 with a fever, cou...

Jm954

Administrator•4 years ago

13 Replies

Venetoclax and low white count

I've been on venetoclax for about two months. I had a difficult time with the ramp up keeping all my blood counts very low. I was in the hospital 17 days....

I've been on venetoclax for about two months. I had a difficult time with the ra...

Jamstev71

•4 years ago

15 Replies

No letter ??

On the same vein as before is there anyone living in Wales who has received a letter regarding shielding . It would be helpful to know whether the NHS in...

On the same vein as before is there anyone living in Wales who has received a l...

Hilo13

•4 years ago

6 Replies

Good News! BTK inhibitor therapy is effective in patients with CLL resistant to venetoclax

3rd April 2020 Blood Key points to note: BTK inhibitor therapy achieves durable disease control for patients with CLL after progression on venetoclax....

3rd April 2020 Blood Key points to note: BTK inhibitor therapy achieves durable ...

Jm954

Administrator•4 years ago

5 Replies

Swallowing

Anyone else having issues swallowing pills and food...everything seems to get struck in my throat. Could this be another side effect of ibrutinib?

Anyone else having issues swallowing pills and food...everything seems to get st...

Imbub

•4 years ago

21 Replies

If you want to learn about CLL text or video

The following is a long list of links and resources, too many to read and understand without dedicated effort. So please treat it like a smorgasbord buffet or...

The following is a long list of links and resources, too many to read and unders...

lankisterguy

Volunteer•4 years ago

5 Replies

Virtual Community Meeting April 3 at 11 AM PT on COVID-19 for CLL patients and caregivers

One last reminder before tomorrow's meeting. CLL Society is hosting a COVID-19 Virtual Community Meeting at 11 AM PT / 2 PM ET on Friday, April 3, 2020. For...

One last reminder before tomorrow's meeting. CLL Society is hosting a COVID-19 V...

bkoffman

CLL CURE Hero•4 years ago

2 Replies

Sainsburys in Wales, Scotland and NI

If you are over 70 years of age, or you’re extremely vulnerable and live in Wales, Scotland or Northern Ireland, you can get access to priority home delivery...

If you are over 70 years of age, or you’re extremely vulnerable and live in Wal...

DuckyLucky

•4 years ago

Be the first to reply

Covid-19

I am a 69 yr old male. I have CLL and Coronary Artery Disease. What could I do now to boost my immunity and my odds of survival should I become infected with...

I am a 69 yr old male. I have CLL and Coronary Artery Disease. What could I do n...

Estate1

•4 years ago

7 Replies

Richter syndrome. Ganglion below the neck

Hello friends A month ago I wrote, because a small node had grown out from under my jaw. I did an ultrasound and they found a 4X3 millimeter node. Do not call...

Hello friends A month ago I wrote, because a small node had grown out from under...

Priss69

•4 years ago

30 Replies

Osteoporosis caused by Imbruvica

Hi everyone: I was wondering if anyone has been told that taking Imbruvica resulted in osteoporosis. My oncologist has made this connection. I have been taking...

Hi everyone: I was wondering if anyone has been told that taking Imbruvica resul...

ettie18

•4 years ago

7 Replies

how to cure herpes Zoster? my sister had that , how to cure it??

pls i need help my sister , have herpes Zoster i think ,. how to cure it?

julznapa

•4 years ago

2 Replies

Blood results

Hi, all just had my blood results back - I was diagnosed in 2016 and the white count was 8 these are my current results below. I am on watch and wait. White...

Hi, all just had my blood results back - I was diagnosed in 2016 and the white c...

TOMMOHOODIE

•4 years ago

3 Replies

N H S LETTER

Good morning , yesterday as my husband had not had a text or letter i rang his hematology specialist nurse and was told as he was in remission he would not be...

Good morning , yesterday as my husband had not had a text or letter i rang his h...

very

•4 years ago

5 Replies

Bump on Elbow

Good Morning, I have been on 280mg of Imbruvica for 6 months and have had little issues, however; for the past few days I've developed this bump on my arm...

Good Morning, I have been on 280mg of Imbruvica for 6 months and have had littl...

brooklyn7672

•4 years ago

4 Replies

The impact of dose modification and temporary interruption of ibrutinib on outcomes of CLL patients in routine clinical practice

This paper in Cancer Medicine (18/03/2020) reports on a retrospective study of 209 consecutive CLL patients treated with Ibrutinib outside the context of a...

This paper in Cancer Medicine (18/03/2020) reports on a retrospective study of 2...

Jm954

Administrator•4 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2020

Valtrex?

I found this during Covid lockdown but NOT because of it.

Timelines:plastic (3days) glass (5)

Shielding letters update

Canada begins clinical trial of experimental COVID-19 treatment using plasma from recovered individuals

Umbralisib & Ibrutinib Clinical Trial

How Safe are Grocery Deliveries ?

CLL Society's Expert Access Online Free 2nd Opinion/ No office visit involved

I'm new here; question about ibrutinib and rash

Bone Marrow Biopsy Options?

Skin manifestations of COVID19

Go to the hospital with Covid or not?

Neck pain

Superfoods

Tocilizumab may be Helpful for the Cytokine Storm if our Immune Systems over react to COVID19

Venetoclax and low white count

No letter ??

Good News! BTK inhibitor therapy is effective in patients with CLL resistant to venetoclax

Swallowing

If you want to learn about CLL text or video

Virtual Community Meeting April 3 at 11 AM PT on COVID-19 for CLL patients and caregivers

Sainsburys in Wales, Scotland and NI

Covid-19

Richter syndrome. Ganglion below the neck

Osteoporosis caused by Imbruvica

how to cure herpes Zoster? my sister had that , how to cure it??

Blood results

N H S LETTER

Bump on Elbow

The impact of dose modification and temporary interruption of ibrutinib on outcomes of CLL patients in routine clinical practice

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