Posts - CLL Support | HealthUnlocked

CLL Support

22,514 members • 38,671 posts

All posts for March 2024

Foliculitis in legs

That used to be normal with LLC and treatment with Ibrutinib?

Denisguay

•27 days ago

15 Replies

Activating lipid nanoparticles can streamline the production of CAR T-cells for cancer immunotherapy

A bio- engineering breakthrough is reported here https://phys.org/news/2024-03-method-car-cells-lipid-nanoparticles.html and the article includes a link to the...

A bio- engineering breakthrough is reported here https://phys.org/news/2024-03-m...

bennevisplace

•27 days ago

3 Replies

Influenza A while on W & W,-- the price for not wanting a vaccine

I decided to put my pride and lack of articulate writing skills aside to share a my learning experience . It was in Jan of 23 when I was told over the phone...

I decided to put my pride and lack of articulate writing skills aside to share a...

Seeker090260

•27 days ago

4 Replies

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CLL + Bladder cancer + prostate cancer

I've been diagnosed with Cll since 2016 and been on Acalabrutinib for 2 years which is working really well along with monthly plasma ivig infusions. I'm 63 and...

I've been diagnosed with Cll since 2016 and been on Acalabrutinib for 2 years wh...

Brucex100

•27 days ago

13 Replies

My constant source of strength, peace and everything good

This was last Fall, but I ran across it the other day and wanted to share. I stand truly amazed at God and His beautiful creations. Today, I am most...

This was last Fall, but I ran across it the other day and wanted to share. I ...

skipro

•27 days ago

32 Replies

What to watch to indicate treatment?

I am probably just terrible at searching but I can't find anything! I read it's not wbc, it's not alc, it could be symptoms, it might be.... WHAT is it that...

I am probably just terrible at searching but I can't find anything! I read it's ...

Butterfinger77

•28 days ago

5 Replies

Kidney issues because of CLL

Hello all! Anyone had kidney issues related to CLL? I will do the treatment not because of my lab results but because CLL filled my kidneys with white cells...

Hello all! Anyone had kidney issues related to CLL? I will do the treatment not ...

BMFCDRW

•29 days ago

22 Replies

glue ear with CLL

hi. I have glue ear. Anyone any experience? It’s really tiring. Only had it a few days. Should I force myself out to walk etc. Will it go away ??

hi. I have glue ear. Anyone any experience? It’s really tiring. Only had it ...

Corin850

•29 days ago

4 Replies

My first COVID positive test ever came up twice positive

I thought I had a cold coming Wednesday night while at work at the local hospital, then yesterday had my rutuximab at the local chemo unit told them about my...

I thought I had a cold coming Wednesday night while at work at the local hospita...

Stewie_1968

•29 days ago

18 Replies

CD 38 marker

Hi, I read that the CD38 marker was bad prognostic. Can someone tell me more precisely what to expect (disease course, life expectancy)? The cll is at stage...

Hi, I read that the CD38 marker was bad prognostic. Can someone tell me more p...

22malbec

•29 days ago

2 Replies

another quick update

I am now back home . My gall bladder has calmed down so the plan is to have it removed in next 10 weeks ( that’s the waiting time ) My biggest concern now...

I am now back home . My gall bladder has calmed down so the plan is to have it r...

Hilo13

•30 days ago

10 Replies

Does reducing blood sugar help?

I am wondering what happens if cll patients just eat foods that cut out sugar spikes? Does that help? I see lots of studies showing that fasting is generally...

I am wondering what happens if cll patients just eat foods that cut out sugar sp...

Research123

•30 days ago

31 Replies

CLL RESEARCH

I was contacted by a research company wanting to interview people in treatment for CLL. I'm currently W&W but thought others here might want to be paid to...

I was contacted by a research company wanting to interview people in treatment f...

Safel

•1 month ago

3 Replies

Acute kidney failure - creatinine is climbing

My hubby's treatment is venetoclax and acalabrutinib (he previously had obinutuzumab too). He is also taking sulfameth trimeth (for ammonia) and valacyclivor...

My hubby's treatment is venetoclax and acalabrutinib (he previously had obinutuz...

spi3

•1 month ago

7 Replies

Privigen 45g/4weeks !!!

I was diagnosed in November 7th 2019 following a bone marrow biopsy. Was on Wait & Wacht until November26th 2023 when they started GAMMA IV...

I was diagnosed in November 7th 2019 following a bone marrow biopsy. Was on W...

doc1947g

•1 month ago

15 Replies

Chronic Pain (Muscle and Joint Pain)

Recent Harvard Health Letter, Volume 49, Number 6, April 2024 (Harvard Medical School) This newsletter mentions a site:...

Recent Harvard Health Letter, Volume 49, Number 6, April 2024 (Harvard Medical ...

Katie-LMHC-Artist

•1 month ago

6 Replies

Update on Ven & Obin protocol

I’m all the way through the ramp up on Venetaclax - just started 400 mg and have 2-3 more Obin infusions. Here is what I’ve found: 1. Insist on anti nausea...

I’m all the way through the ramp up on Venetaclax - just started 400 mg and have...

SunnyCA

•1 month ago

11 Replies

Emails

I have realised I am not getting emails anymore and I havent unsubscribe!!Has the system changed please or can someone explain why they have stopped. Thanks.

I have realised I am not getting emails anymore and I havent unsubscribe!!Has th...

Westie11-

•1 month ago

10 Replies

Emergency use authorization of a new pre-exposure prophylaxis (PrEP) for COVID-19, PEMGARDA™ (VYD222)

Hi, Great news for the immunocompromised community including us. Invivyd announced late last week the emergency use authorization of their new pre-exposure...

Hi, Great news for the immunocompromised community including us. Invivyd annou...

bkoffman

CLL CURE Hero•1 month ago

6 Replies

Falling platelet counts after achieving Undetectable Minimal Residual Diseaese

Hello folks I completed a course of Venetoclax & Obinituzumab (Gazyva) last March, and happily achieved UMRD (undetectable minimal residual disease). I'm...

Hello folks I completed a course of Venetoclax & Obinituzumab (Gazyva) last Mar...

DinosaurDad

•1 month ago

10 Replies

New drug authorized to protect immune compromised from Covid-19

I guess this is brand new...called Pemgarda. https://www.statnews.com/2024/03/22/covid-immunocompromised-antibody-protection-invivyd/

I guess this is brand new...called Pemgarda. https://www.statnews.com/2024/...

DinosaurDad

•1 month ago

1 Reply

Remission but suddenly extreme night sweats

I received the good news that I am in complete remission......no cancer cells in my blood.... but unfortunately I was just diagnosed with Gastritis due to the...

I received the good news that I am in complete remission......no cancer cells in...

MalcT

•1 month ago

8 Replies

uMRD 6

I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a...

I have been living for the one year point on V plus O to get the clonal sequenc...

skipro

•1 month ago

10 Replies

skiing with a fellow CLLer

grateful for the invite by a fellow CLLer on treat as well to ski

skipro

•1 month ago

Be the first to reply

more ski pics

in honor of one of ours who is no longer able to ski

skipro

•1 month ago

Be the first to reply

Skiing with a fellow CLL patient who is also treatment

I am posting this series of pictures for a fellow CLL patient who is not able to ski right now due to bone pain. I’m so grateful that I can get out there and...

I am posting this series of pictures for a fellow CLL patient who is not able t...

skipro

•1 month ago

5 Replies

Fatigue only when running.

My husband is in early 70's and has been in wait and watch stage for 8 years. This past year he is noting a new fatigue: getting out of breath after running...

My husband is in early 70's and has been in wait and watch stage for 8 years. ...

Snowgoddess

•1 month ago

6 Replies

Fatigue.. bloods good. Is remission over and SLL back?

SLL 2016 - bloods good, bulky lymph nodesBR x6 rounds 2019 Remission 2024: bloods all good - bad fatigue is back Is remission over, or is it something else?...

SLL 2016 - bloods good, bulky lymph nodesBR x6 rounds 2019 Remission 2024: blood...

Shedman

•1 month ago

10 Replies

mid-year covid vaccine

the CDC has recommended we immuno-suppressed get a second covid vaccine this year. i am getting mine tomorrow, six months after the 2023-24 first dose....

the CDC has recommended we immuno-suppressed get a second covid vaccine this yea...

ElMaga

•1 month ago

10 Replies

Background

I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to...

I appreciate the interest in knowing more of my "back story" and my CLL "markers...

leftysfsl1945

•1 month ago

25 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2024

Foliculitis in legs

Activating lipid nanoparticles can streamline the production of CAR T-cells for cancer immunotherapy

Influenza A while on W & W,-- the price for not wanting a vaccine

CLL + Bladder cancer + prostate cancer

My constant source of strength, peace and everything good

What to watch to indicate treatment?

Kidney issues because of CLL

glue ear with CLL

My first COVID positive test ever came up twice positive

CD 38 marker

another quick update

Does reducing blood sugar help?

CLL RESEARCH

Acute kidney failure - creatinine is climbing

Privigen 45g/4weeks !!!

Chronic Pain (Muscle and Joint Pain)

Update on Ven & Obin protocol

Emails

Emergency use authorization of a new pre-exposure prophylaxis (PrEP) for COVID-19, PEMGARDA™ (VYD222)

Falling platelet counts after achieving Undetectable Minimal Residual Diseaese

New drug authorized to protect immune compromised from Covid-19

Remission but suddenly extreme night sweats

uMRD 6

skiing with a fellow CLLer

more ski pics

Skiing with a fellow CLL patient who is also treatment

Fatigue only when running.

Fatigue.. bloods good. Is remission over and SLL back?

mid-year covid vaccine

Background

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