Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for February 2020

Zicam

I know to talk to my doctor but it’s after 5 and I know it’s important to start right away to shorten duration. I’m on Ibrutinib, obintuzinab, and venetoclax.

I know to talk to my doctor but it’s after 5 and I know it’s important to start ...

•4 years ago

Right hand and wrist swelling

I have been on 420mg Imbrutinib for a little over a year and have just started having swelling and pain in right hand and wrist. I have also noticed swelling...

I have been on 420mg Imbrutinib for a little over a year and have just started h...

•4 years ago

Post chemo CLL information

My dad is detected with CLL ,fourth stage.the wbc count was 7.2 lacs..after first chemo it went dwn to 2.88 almost.But after second chemo ,it again went up to...

My dad is detected with CLL ,fourth stage.the wbc count was 7.2 lacs..after firs...

•4 years ago

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MRD - clonoSEQ new test approved by Medicare

Has anyone had this new lab measurement? It is more precise than FLOW. Thank you Dr Koffman - CLLSociety for the link & update. Diana...

Has anyone had this new lab measurement? It is more precise than FLOW. Thank y...

•4 years ago

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Richter Transformation Testimonials. Survivors

Hi. As some of you will know, last week I formed a Facebook group to try to locate all possible Ricther and tell us your case. With your permission, I want to...

Hi. As some of you will know, last week I formed a Facebook group to try to loca...

•4 years ago

Cold sores

Is anyone else being bothered by cold sores,??i have sll on watch and wait and have cold sores all if a sudden dang

Is anyone else being bothered by cold sores,??i have sll on watch and wait and...

•4 years ago

Venclexta 600 mg

Hi everyone! Is anyone on 600 mg of Venclexta? My father is on Venclexta for almost two years now. Rituxan one infusion every three months was added in January...

Hi everyone! Is anyone on 600 mg of Venclexta? My father is on Venclexta for alm...

•4 years ago

Long Wait and Watch time

Can anyone share stories of having CLL Unmutated and being on W&W for a long time? I just need a booster today. Please.

Can anyone share stories of having CLL Unmutated and being on W&W for a long tim...

•4 years ago

Update to Ibrutinib

This is my first update to a post I made roughly 2 weeks ago. I see the oncologist every 2 weeks for a blood stick and office visit since being put on...

This is my first update to a post I made roughly 2 weeks ago. I see the oncologi...

•4 years ago

Negative CD 38

Hi. I had 2 flow cytometry one by blood and one by bmb. Both are negative for CD38. I haven’t been tested for IGHV but curious if anyone has heard that...

Hi. I had 2 flow cytometry one by blood and one by bmb. Both are negative for ...

•4 years ago

Coping with anxiety

Just one addition to the great suggestions. In addition to meditation, painting, and exercise when I can, I watch programs that make me laugh. Doc Martin is a...

Just one addition to the great suggestions. In addition to meditation, painting...

•4 years ago

Critically low white cell count

My husband is in hospital after endless coughing than fever showed RSV virus and a bit of pneumonia in one lung. He's been anemic for months (very low...

My husband is in hospital after endless coughing than fever showed RSV virus and...

•4 years ago

What to do

How do I know if my husbands sx are from the VENETOCLAX or the CLL. He is ext. fatigued, no interest. No appetite. He has been on the med for 3 wks. Prior to...

How do I know if my husbands sx are from the VENETOCLAX or the CLL. He is ext. f...

•4 years ago

So Much Money in the Drawer

after all of this I find myself with a half sleeve of Ibrutinib and a full sleeve of the same, value about $17k and 3 weeks worth of Acalabrutinib worth about...

after all of this I find myself with a half sleeve of Ibrutinib and a full sleev...

•4 years ago

Alpha Lipoic Acid: MD Anderson

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=2ahUKEwi3q8WQhrTnAhVYl3IEHfdGAJ4QFjAAegQIAhAB&url=https%3A%2F%2Fclinicaltrials.gov%2Fct2%2Fs

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=2ahUKEwi3q8W...

•4 years ago

Is it time to switch to acalabrutinib?

My WBC rose from 7.5 to 13.5 over the past few years, and I've been on ibrutinib for five years. Should i be worried. Should i try acalabrutinib?

My WBC rose from 7.5 to 13.5 over the past few years, and I've been on ibrutinib...

•4 years ago

Low Grade Fever

My apologies if this seems like a small issue but it’s the first time I’ve had a fever since receiving my diagnosis. I have a low grade fever of 99.2. I...

My apologies if this seems like a small issue but it’s the first time I’ve had a...

•4 years ago

Return of symptoms after starting on I & V four months ago

Hi, I was diagnosed with SLL/CLL in Jan 2018. Enlarged lymph nodes just about everywhere including a big one in the mesentery (back of abdomen) that could...

Hi, I was diagnosed with SLL/CLL in Jan 2018. Enlarged lymph nodes just about ...

•4 years ago

Azacitidine and Venclexta

I am new to this forum. After having been on Azacitidine for over 3 years, a couple of weeks ago my doctor added Venclexta with a short ramp-up .....

I am new to this forum. After having been on Azacitidine for over 3 years, a co...

•4 years ago

LEF-1

Hello. I was curious if anyone diagnosed with CLL had a negative LEF-1 or knew anything about LeF 1 and what significance it plays with the disease. Mine was...

Hello. I was curious if anyone diagnosed with CLL had a negative LEF-1 or knew ...

•4 years ago

Started Treatment (O + V)

Hi everybody. 1st post here. Was diagnosed in August, 2018, W&W. Last summer (May), things changed: bit by a brown-recluse spider, staph infections, blood...

Hi everybody. 1st post here. Was diagnosed in August, 2018, W&W. Last summer (M...

•4 years ago

Ibrutinib/Acalabrutinib and Neuropathy

it’s quite public that i had had a myriad of issues since starting with the BTKs. Most recently it was cardiac issues which I have been dealing with for two...

it’s quite public that i had had a myriad of issues since starting with the BTKs...

•4 years ago

BLOOD replace may work?.........................................,...........................................................................

Dear my Brothers & Sisters, I had small doubt in my mind if mistake plz sorry.Iam not Dr.but just i had doubt i.e if our WBC is abnormal is it possible to...

Dear my Brothers & Sisters, I had small doubt in my mind if mistake plz sorry.Ia...

•4 years ago

ASH2019 Interviews

Hi all - been a while since I’ve posted. I was lucky enough to go to ASH in December on behalf of Lymphoma Australia and the Lymphoma Coalition. Lots of...

Hi all - been a while since I’ve posted. I was lucky enough to go to ASH in Dec...

•4 years ago

Hysterectomy

Hi. I tried to find info regarding this and could not, when I found out about my lymphocytosis was during a female exam where we were discussing having a...

Hi. I tried to find info regarding this and could not, when I found out about m...

•4 years ago

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