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CLL Support

22,618 members • 38,847 posts

All posts for February 2020

Australians have your say in getting CLL medicines approved

Hi everyone, I am just reaching out to Aussies on this site to let you know that the following 2 treatments are being considered in March for public funding in...

Hi everyone, I am just reaching out to Aussies on this site to let you know that...

lymphomaoz

•4 years ago

7 Replies

What to expect from v + o initial treatment

I am a 77 year old male about to start venetoclax + obinutuzumab. What should I be aware of during the first stages of the treatment? I'm obviously concerned...

I am a 77 year old male about to start venetoclax + obinutuzumab. What should I...

ronsolo306

•4 years ago

20 Replies

Ibrutinib

I am new to this site. I was diagnosed almost a year ago with CLL. I’m on Iburtinib and it works great for me. The first 3 weeks of taken Ibutinib was a none...

I am new to this site. I was diagnosed almost a year ago with CLL. I’m on Iburti...

Wcsailor

•4 years ago

4 Replies

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Richter’s Transformation - Preliminary results of the clinical trial with Mosunetuzumab

Preliminary results of the clinical trial with clinical Mosunetuzumab at the ASH2019 congress. The recruitment of patients with relapsed / refractory Richter...

Preliminary results of the clinical trial with clinical Mosunetuzumab at the ASH...

Priss69

•4 years ago

12 Replies

Can CLL treatment or CLL cause bladder cancer?

I had CLL (in remission) and was on IBR for 2 years. I recently have been treated for bladder cancer during the last 12 months or so and after treatment...

I had CLL (in remission) and was on IBR for 2 years. I recently have been treate...

barger1951

•4 years ago

9 Replies

Avadomide monotherapy in relapsed/refractory DLBCL: Safety, efficacy, and a predictive gene classifier

Treatment options for relapsed/refractory diffuse large B-cell lymphoma (R/R DLBCL) are limited with no standard of care; prognosis is poor, with 4- to 6-month...

Treatment options for relapsed/refractory diffuse large B-cell lymphoma (R/R DLB...

Priss69

•4 years ago

2 Replies

My first granddaughter!

Joy of my life that keeps me going!! My sunshine ☀️ Maria!!

littledab

•4 years ago

15 Replies

Latest blood draw

Hello, I was diagnosed with Cll in June 19 and I am 59yo. active male. I was exhausted all the time, lost 12 lbs in 2 months so my gp ran a myriad of tests to...

Hello, I was diagnosed with Cll in June 19 and I am 59yo. active male. I was exh...

jj401

•4 years ago

4 Replies

Remission on Acalabrutinib and Venetoclax

Hi everyone I’ve been on Ace cll 311 trial for 3 1/2 months after my latest CT scan my Dr has told me I am in remission I have to keep taking both tablets to...

Hi everyone I’ve been on Ace cll 311 trial for 3 1/2 months after my latest CT s...

Yidarmy69

•4 years ago

21 Replies

Love wins

Good morning everyone. This is Marriage Day(I heard) anyway, I’m not married but I’m posting anyway. Love everyone and smile your way through this trying time.

Good morning everyone. This is Marriage Day(I heard) anyway, I’m not married but...

Jaming

•4 years ago

2 Replies

Ibrutnib vs Acalabrutinib

Treatment starting soon and given option on 2 drugs Ibrutinib and Acalabrutinib by my hematologist, if one had to choose for first frontline treatment which...

Treatment starting soon and given option on 2 drugs Ibrutinib and Acalabrutinib ...

Carl123

•4 years ago

101 Replies

Dimly Lit Awakenings

Yesterday I uneventfully finished my 3rd infusion of Gazyva. Starting Venetoclax on Valentine’s Day. Feeling great, better than I have in years, as I’ve posted...

Yesterday I uneventfully finished my 3rd infusion of Gazyva. Starting Venetoclax...

DRM18

•4 years ago

28 Replies

VENETOCLAX

Just wondered how many of you about there are on VENETOCLAX? My husband was started on this med and was ramped up just before the increase to 200mg when he had...

Just wondered how many of you about there are on VENETOCLAX? My husband was star...

Gogldn

•4 years ago

16 Replies

Chilled Feeling

Have Ben on Imbruvica since September 2017. Last several months I get the chills in late afternoon and into the evening, even with heavy sweatshirt on or...

Have Ben on Imbruvica since September 2017. Last several months I get the chill...

Agatesup

•4 years ago

3 Replies

CLL and Hearing loss

I am 65 yo male. W&W. First diagnosed in Jan 2019. My hearing loss has accelerated in the past year and I don't think it's just because I'm getting older....

I am 65 yo male. W&W. First diagnosed in Jan 2019. My hearing loss has acceler...

The-Man-with-a-Plan

•4 years ago

29 Replies

Imbruvica MADE IN CHINA....How will the Coronavirus effect it?

Just checking in with a question. I understand that the Imbruvica (ibrutinib) pills many of us are taking are MADE IN CHINA or at least many of the ingredients...

Just checking in with a question. I understand that the Imbruvica (ibrutinib) pi...

jdolinger

•4 years ago

7 Replies

ACE CLL- 311 Update Acalabrutinib Venetaclax

Hi everyone I’ve been on this trial since October . I had a CTt scan last week got the results today all of my noades are now normal size bloods all good the...

Hi everyone I’ve been on this trial since October . I had a CTt scan last week g...

Yidarmy69

•4 years ago

22 Replies

Melanoma Diagnosis

I was first diagnosed with CLL back in 2011 and since then I have been on watch and wait with my blood results rising relatively slowly over the years my...

I was first diagnosed with CLL back in 2011 and since then I have been on watch ...

terrence

•4 years ago

12 Replies

New York City -- CLL Patient Support Group February 9 at 3:00pm.

New York City -- CLL Patient Support Group https://cllsociety.org/venue/patient-resource-center-library/ The CLL Society invites you to our support group...

New York City -- CLL Patient Support Group https://cllsociety.org/venue/patien...

lankisterguy

Volunteer•4 years ago

2 Replies

MBL

I was diagnosed with MBL 18 months ago. The hospital discharged me a year ago and I have 3 monthly blood tests at my GP surgery. My Lymphocytes are stable at...

I was diagnosed with MBL 18 months ago. The hospital discharged me a year ago an...

Ashleytown

•4 years ago

4 Replies

Update - Mistakes in specialists' reports

I am happy to say I found out yesterday the ENT doc did an addendum to my report which needed wrong symptoms deleted and one as a possible cause of my...

I am happy to say I found out yesterday the ENT doc did an addendum to my report...

marcyh

•4 years ago

1 Reply

High AST level on latest LFT test

Recent blood tests showed a higher than normal AST reading in LFT tests. Anyone had similar readings and what are the implications etc? Is Ibrutinib a...

Recent blood tests showed a higher than normal AST reading in LFT tests. Anyone...

danter

•4 years ago

2 Replies

FISH testing and chromosomes for dummies

I am betting most of us had a cll tabula rasa at diagnosis, that is, our knowledge of cll was a blank slate. When told I had cll, all I heard was the word...

I am betting most of us had a cll tabula rasa at diagnosis, that is, our knowled...

cajunjeff

•4 years ago

61 Replies

The Contrarian Who Cures Cancers

https://www.quantamagazine.org/nobel-laureate-james-p-allison-cures-cancers-with-immunotherapy-20200203

https://www.quantamagazine.org/nobel-laureate-james-p-allison-cures-cancers-wit...

zaax

•4 years ago

3 Replies

Still learning

I am new to CLL, have been reading posts a lot, and have a question. What is “mutated “ and “unmutated”? I see everyone talking about it a lot and I don’t...

I am new to CLL, have been reading posts a lot, and have a question. What is “m...

Dakota10

•4 years ago

5 Replies

Please share experience of venetoclax plus obinutuzimab or acalabrutinib treatment in a survey that may help others gain access?

Dear UK and international friends please can you help us as we press for access to new CLL treatments. UK patient groups & charities work together with...

Dear UK and international friends please can you help us as we press for access...

HAIRBEAR_UK

Founder Admin•4 years ago

2 Replies

Global survey into experience of CLL and Lymphoma care

Not sure if someone has already posted about this global survey ? In case not, here’s the link... Please take a look and complete the survey! Thank you....

Not sure if someone has already posted about this global survey ? In case not, h...

AR0613

•4 years ago

6 Replies

How important is it to have full time care taker when recovering from bone marrow transplant

I have to have bone marrow transplant. Problem is i live in New England. My family is out west(Seattle) , i only have my ex wife and 16 y.o son near me so i...

I have to have bone marrow transplant. Problem is i live in New England. My fami...

hossbball

•4 years ago

4 Replies

FISH Results

I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on...

I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FIS...

DylanPxxx

•4 years ago

3 Replies

O + V: Update One!

12 days (3 infusions, total of 2000mg) into Gazyva. Felt fantastic since the day of infusion 3 (01.31.20). Lots of energy, sleeping well, no more visible...

12 days (3 infusions, total of 2000mg) into Gazyva. Felt fantastic since the da...

DRM18

•4 years ago

9 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for February 2020

Australians have your say in getting CLL medicines approved

What to expect from v + o initial treatment

Ibrutinib

Richter’s Transformation - Preliminary results of the clinical trial with Mosunetuzumab

Can CLL treatment or CLL cause bladder cancer?

Avadomide monotherapy in relapsed/refractory DLBCL: Safety, efficacy, and a predictive gene classifier

My first granddaughter!

Latest blood draw

Remission on Acalabrutinib and Venetoclax

Love wins

Ibrutnib vs Acalabrutinib

Dimly Lit Awakenings

VENETOCLAX

Chilled Feeling

CLL and Hearing loss

Imbruvica MADE IN CHINA....How will the Coronavirus effect it?

ACE CLL- 311 Update Acalabrutinib Venetaclax

Melanoma Diagnosis

New York City -- CLL Patient Support Group February 9 at 3:00pm.

MBL

Update - Mistakes in specialists' reports

High AST level on latest LFT test

FISH testing and chromosomes for dummies

The Contrarian Who Cures Cancers

Still learning

Please share experience of venetoclax plus obinutuzimab or acalabrutinib treatment in a survey that may help others gain access?

Global survey into experience of CLL and Lymphoma care

How important is it to have full time care taker when recovering from bone marrow transplant

FISH Results

O + V: Update One!

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