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CLL Support

22,611 members • 38,830 posts

All posts for January 2022

Level of immunity

Sorry r cusher have had 2 A Z and a Pfizer and have another ? awaiting 4th which will be a few months away. Have my PCR test kit and many flow tests and will...

Sorry r cusher have had 2 A Z and a Pfizer and have another ? awaiting 4th which...

Krodney

•2 years ago

7 Replies

Sudden Lymph Node Enlargement

I am a 58 year old female and was diagnosed a year ago. I have great bloodwork and have been without symptoms until a month ago & now have an enlarged lymph...

I am a 58 year old female and was diagnosed a year ago. I have great bloodwork ...

StrengthHopeLove

•2 years ago

14 Replies

Treatment advice after calquence fails? Pain relief advice?

Hi I'm new in here. My mum has CLL. She was 80 on new years day. She was previously diagnosed with sarcoidosis about 7 years ago and then CLL in March 2018....

Hi I'm new in here. My mum has CLL. She was 80 on new years day. She was previou...

SimmiP

•2 years ago

6 Replies

Want to take advantage of all our features? Just log in!

So what should I ask my new specialist?

Am a 50s male diagnosed with CLL less than one year ago. Recently, ALC doubling rate has progressed to <3 months, up to 48 k/uL recently. Platelets have...

Am a 50s male diagnosed with CLL less than one year ago. Recently, ALC doublin...

scryer99

•2 years ago

6 Replies

Obinutuzumab and a bit of worry.

Obinutuzumab and a bit of worry. I had the first two parts of Obinutuzumab last week, Tuesday and Weds. First day was rough as was the second night and...

Obinutuzumab and a bit of worry. I had the first two parts of Obinutuzumab last ...

Nama-8

•2 years ago

16 Replies

CLL the unexpected.

Well my husband started Imbruvica on Oct 5 with wbc at 300,00. The week of Dec 20 his hands, fingers, and wrist broke out with an inflamed almost like a blood...

Well my husband started Imbruvica on Oct 5 with wbc at 300,00. The week of Dec 2...

GrannyMyers

•2 years ago

25 Replies

Platelets

Hi friends. Since my anticovid 2 vaccination began with Sinophar and an Astrazeneca booster, my platelets began to drop. I had 230 and reached 170 in 8...

Hi friends. Since my anticovid 2 vaccination began with Sinophar and an Astraze...

Bixilon

•2 years ago

4 Replies

CLL Global Research Foundation Town Hall - Dr. Keating, Dr. Wierda, Dr. Ferrajoli replay of Jan 13, 2022 webinar & ASH 2021 highlights.

Video Replay of the Jan 13 presentations- lots of good information on recent research study results on CLL especially from ASH 2021 -...

Video Replay of the Jan 13 presentations- lots of good information on recent res...

lankisterguy

Volunteer•2 years ago

9 Replies

Priority PCR test and SNOMED coding

Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse...

Thank you for all your replies and empathy. my GP surgery is lovely but they don...

Greencyclist

•2 years ago

7 Replies

USA- Last Chance to Enroll in 2022 Health Coverage Through the ACA! - Spanish Language Digital Support Community Now Available

See live webpage https://cancersupportcommunity.salsalabs.org/1-14digest?wvpId=dca94fc6-fa5c-45a6-b437-4bcc4a5a40e1 - The period to purchase health insurance...

See live webpage https://cancersupportcommunity.salsalabs.org/1-14digest?wvpId...

lankisterguy

Volunteer•2 years ago

Be the first to reply

Anyone receive Benedryl or Prednisone along with Monocolonal Antibodies or Evusheld?

Has anyone who got monoconal antibodies for Covid treament or Evusheld for covid prevention received Benedryl or prednisone to counter any infusion reaction?

Has anyone who got monoconal antibodies for Covid treament or Evusheld for covid...

Ibru

•2 years ago

7 Replies

Uk What is the exact SNOMED code for CLL to get priority PCR test kit and letter?

In the continuing saga of trying to get a priority PCR test and letter does anybody know the exact SNOMED code For CLL that has to be on your medical records...

In the continuing saga of trying to get a priority PCR test and letter does anyb...

Greencyclist

•2 years ago

42 Replies

Evusheld

Just received Evusheld injections in Westchester county NY hospital. 1 injection simultaneously given in each buttock. Uneventful observable response. Feel a...

Just received Evusheld injections in Westchester county NY hospital. 1 injectio...

desti

•2 years ago

7 Replies

4th Moderna (Booster) Shot is Kicking My @$$

Yesterday 1/13 I got the Moderna Booster exactly 5 months after receiving third full dose of Moderna. I was curious how I would react, as I had pretty...

Yesterday 1/13 I got the Moderna Booster exactly 5 months after receiving third ...

kc1953

•2 years ago

2 Replies

4th dose - to take or not take?

I've had three rounds of the Pfizer COVID vaccine and my GP has kindly offered me another dose. I have negligible immunoglobulin and so am likely to generate...

I've had three rounds of the Pfizer COVID vaccine and my GP has kindly offered m...

Me2AsWell

•2 years ago

9 Replies

Pneumonia

Diagnosed with cll 2013, had my first round of pneumonia October 2021, took antibiotics got over it. Shortly after that had appointment with oncologist we...

Diagnosed with cll 2013, had my first round of pneumonia October 2021, took anti...

Tgw61

•2 years ago

18 Replies

The Priority PCR SAGA: A Never Ending Story

I have been ringing/mailing 119, my GP, my local CCG, NHS contact centre and my specialist for the whole of this week. Like everyone else has said, 119 people...

I have been ringing/mailing 119, my GP, my local CCG, NHS contact centre and my ...

Harvist

•2 years ago

6 Replies

CLL

My husband was diagnosed 5 year's ago with CLL and still going in the right direction, and on ibruvinib. Got his next chemo check up next month, and speaks to...

My husband was diagnosed 5 year's ago with CLL and still going in the right dire...

BayfieldAnnette

•2 years ago

3 Replies

Ibrutinib and antibodies

Just been told by the hospital that despite 3rd jab hubby has no antibodies. I know some people on Ibrutinib were advised to stop taking it prior to their...

Just been told by the hospital that despite 3rd jab hubby has no antibodies. I k...

tubbing

•2 years ago

5 Replies

SARS-CoV-2 Omicron Variant Neutralization in Serum from Vaccinated and Convalescent Persons

https://www.nejm.org/doi/full/10.1056/NEJMc2119236?query=TOC&cid=NEJM%20eToc,%20January%2013,%202022%20DM619499 Figure 1, E through H illustrate the point:...

https://www.nejm.org/doi/full/10.1056/NEJMc2119236?query=TOC&cid=NEJM%20eToc,%20...

bennevisplace

•2 years ago

2 Replies

Accessing new treatments against COVID19 and priority PCR home test kits

Blood Cancer UK have sent me a survey "With an increase in Omicron cases, we know it's an understandably worrying time for people with blood cancer. That's...

Blood Cancer UK have sent me a survey "With an increase in Omicron cases, we kn...

Sumoldbloke

•2 years ago

14 Replies

Skin wounds while taking ibrutinib

Hello friends, my father has been taking ibrutinib with protective drugs for a year, now my father's skin, especially his neck, is dry and small wounds...

Hello friends, my father has been taking ibrutinib with protective drugs for a ...

Elnaazz

•2 years ago

4 Replies

Evusheld and Gratitude

My twin sister got her 2 consecutive injections of Evusheld today in Los Angeles. She feels fine. I’m incredibly grateful to this wonderful CLL support group....

My twin sister got her 2 consecutive injections of Evusheld today in Los Angeles...

Twin21

•2 years ago

1 Reply

Fcr not improving symptoms

Have cll and started fcr treatment. Went to have 4th treatment yesterday. Was tired and weak since last treatment. On discovering this they have delayed any...

Have cll and started fcr treatment. Went to have 4th treatment yesterday. Was ti...

Kitty

•2 years ago

7 Replies

Parking lot 10, elevator B, floor 8 - venetoclax edition

Some people on here who treat at MD Anderson (MDA) or have read my previous reports of my visits there will recognize the 8th floor as the leukemia ward at...

Some people on here who treat at MD Anderson (MDA) or have read my previous repo...

cajunjeff

•2 years ago

58 Replies

Info management

How can I delete some saved posts ? Some cleaning of older posts would enhance my CLL 'education'.

How can I delete some saved posts ? Some cleaning of older posts would enhance ...

chif888

•2 years ago

4 Replies

Update on curcumin/EGCG?

Hey, folks, wondering -- are those out there taking supplemental curcumin and/or EGCG (from green tea) finding any beneficial responses? Are your liver...

Hey, folks, wondering -- are those out there taking supplemental curcumin and/or...

Vlaminck

•2 years ago

11 Replies

The 119 "help" line story continues. and continues. and continues

Been through the process with 119 (very helpful lady etc. etc) and the final statement after 30 mins and lots of references to supervisors was: I (and...

Been through the process with 119 (very helpful lady etc. etc) and the final sta...

Harvist

•2 years ago

11 Replies

Evusheld vs 4th Pfizer ?

Thus far 3 Pfizer’s zero antibodies. Do I get 4th Pfizer now, or hope for Evusheld within the next two weeks? If I get Pfizer now, per protocol, cannot have...

Thus far 3 Pfizer’s zero antibodies. Do I get 4th Pfizer now, or hope for Evush...

Davidcara

•2 years ago

29 Replies

ORAL ANTICOVID TREATMENT ON IBRUTINIB

On reading about Paxlovid or Molnupiravir in patients on Ibrutinib, its recommended it should not be take because of toxicity , are there any recomendations as...

On reading about Paxlovid or Molnupiravir in patients on Ibrutinib, its recommen...

JJSI

•2 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2022

Level of immunity

Sudden Lymph Node Enlargement

Treatment advice after calquence fails? Pain relief advice?

So what should I ask my new specialist?

Obinutuzumab and a bit of worry.

CLL the unexpected.

Platelets

CLL Global Research Foundation Town Hall - Dr. Keating, Dr. Wierda, Dr. Ferrajoli replay of Jan 13, 2022 webinar & ASH 2021 highlights.

Priority PCR test and SNOMED coding

USA- Last Chance to Enroll in 2022 Health Coverage Through the ACA! - Spanish Language Digital Support Community Now Available

Anyone receive Benedryl or Prednisone along with Monocolonal Antibodies or Evusheld?

Uk What is the exact SNOMED code for CLL to get priority PCR test kit and letter?

Evusheld

4th Moderna (Booster) Shot is Kicking My @$$

4th dose - to take or not take?

Pneumonia

The Priority PCR SAGA: A Never Ending Story

CLL

Ibrutinib and antibodies

SARS-CoV-2 Omicron Variant Neutralization in Serum from Vaccinated and Convalescent Persons

Accessing new treatments against COVID19 and priority PCR home test kits

Skin wounds while taking ibrutinib

Evusheld and Gratitude

Fcr not improving symptoms

Parking lot 10, elevator B, floor 8 - venetoclax edition

Info management

Update on curcumin/EGCG?

The 119 "help" line story continues. and continues. and continues

Evusheld vs 4th Pfizer ?

ORAL ANTICOVID TREATMENT ON IBRUTINIB

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