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CLL Support

22,521 members • 38,683 posts

Devastated

I went to my first three month blood test today. I am at Rai 0. I feel great. My WBC and Lymphocytes doubled in 3 months. I am starting V and O on Monday. I am...

I went to my first three month blood test today. I am at Rai 0. I feel great. My...

EastBayDad

•4 days ago

94 Replies

CLL, Alcalabrutinib, Gout & Steroids

Hi I’ve Three years on Acalabrutinib, I’ve developed gout and had a few episodes, some are more severe than others. The doctor prescribed a course of...

Hi I’ve Three years on Acalabrutinib, I’ve developed gout and had a few episo...

Tomaljoe69

•23 hours ago

20 Replies

CLL questions

Are you living a normal life? Are you happy? Do you live in fear of what will be the next deadly disease?

Are you living a normal life? Are you happy? Do you live in fear of what will be...

Crablegs

•12 days ago

62 Replies

Can eye of newt and toe of frog help cure my cll?

Double, double toil and trouble; Fire burn and caldron bubble. Fillet of a fenny snake, In the caldron boil and bake; Eye of...

Double, double toil and trouble; Fire burn and caldron bubble. Fillet of a fen...

cajunjeff

•7 days ago

44 Replies

Is Septrin (Co-trimoxazole) a lifelong medication

Greetings. Septrin was part of the medication I started at the commencement of Ibrutinib. I take 1 tab 960 mg evey alternate days. Have been on it for about 6...

Greetings. Septrin was part of the medication I started at the commencement of I...

Oldscores1

•2 days ago

22 Replies

anemia

I have been on watch and wait for three years, I mostly had SLL, with alot of lymph node involvement. The last couple of months my hemoglobin and hematocrit...

I have been on watch and wait for three years, I mostly had SLL, with alot of ly...

Gino23

•2 days ago

19 Replies

Almost to the point of despair. Sorry for this.

Hello, everyone. Today's post is more in the form of despair because, frankly, that's how I feel. I'm only a few days away from starting the Obinutuzumab...

Hello, everyone. Today's post is more in the form of despair because, frankly, t...

BMFCDRW

•25 days ago

56 Replies

Joy in response to frustrating news

I had a bone marrow biopsy to see if I was at uMRD and could come off my second CLL treatment in 5 years. The tests were sent to the wrong location and after...

I had a bone marrow biopsy to see if I was at uMRD and could come off my second ...

skipro

•14 days ago

42 Replies

Great News on MSNBC

https://www.msn.com/en-my/health/other/joe-was-at-death-s-door-until-pill-beat-his-cancer-in-six-months/ar-AA1nn0Mz

https://www.msn.com/en-my/health/other/joe-was-at-death-s-door-until-pill-beat-h...

EastBayDad

•8 days ago

31 Replies

A mother

Can anyone suggest a top hematologist in or near Pittsburgh? My daughter is moving from Florida where she has been seen at Moffit for CLL/SLL to Pittsburgh....

Can anyone suggest a top hematologist in or near Pittsburgh? My daughter is mo...

conjoy

•5 days ago

21 Replies

Enlarged spleen CLL stage 0

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges now. My spleen has become very enlarged over the last 6 months so my...

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges ...

Redkatt

•17 days ago

40 Replies

bone joint and muscle pain

I’ve been reading the posts in another series and wanted to break this out. I’ve had a lot of muscle joint and bone pain including my back pelvis and legs as...

I’ve been reading the posts in another series and wanted to break this out. I’...

skipro

•1 month ago

52 Replies

severe covid vaccine reaction, & ibuprofen

After 4 or 5 covid vaccines with very minimal side effects , the most recent vaccine left me sick with fever and several lymph nodes swelling up within a few...

After 4 or 5 covid vaccines with very minimal side effects , the most recent vac...

humaniquarian

•5 days ago

19 Replies

Acalabrutinib, venetoclax and obinutuzumab in relapsed CLL: Phase 2 CLL2-BAAG trial results from the German CLL Study Group

Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations, who are wondering how they will fare with a subsequent treatment. This phase...

Some very encouraging news for those with unmutated IGHV and/or TP53 aberrations...

AussieNeil

Administrator•8 hours ago

5 Replies

CLL treatment

Hi, CLL watch and wait since 2020. My doctor(s) have recommended I start treatment. I’ve been given 2 options. First, Ventaclax and Gazyva. Treatment lasts...

Hi, CLL watch and wait since 2020. My doctor(s) have recommended I start trea...

Nana1961

•11 days ago

24 Replies

Richter’s Anxiety

Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am in my early 50s and am Trisomy 12 unmutated and recently diagnosed. Both of us...

Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am i...

EastBayDad

•1 month ago

40 Replies

Maybe we should start writing letters to politicians or otherwise putting pressure on the goons who are "scrutinizing the Chinese"

https://www.nytimes.com/2024/04/15/health/wuxi-us-drugs-congress.html this company apparently makes Imbruvica and is now being looked at ????

https://www.nytimes.com/2024/04/15/health/wuxi-us-drugs-congress.html this co...

GettinThruIt

•7 days ago

17 Replies

shingles

I havnt posted for ages mainly because I’m generally very fit and well and do vast amounts of excercise but hoping for some possible explanations. Diagnosed...

I havnt posted for ages mainly because I’m generally very fit and well and do va...

Coffeejenny

•14 days ago

24 Replies

Too Much Testing??

There has been numerous posts on Health Unlocked this week from younger, newly diagnosed CLL patients. There seems to be two type of people asking questions....

There has been numerous posts on Health Unlocked this week from younger, newly d...

EastBayDad

•27 days ago

33 Replies

Haemophilus influenzae

Has anyone been able to get immunised against haemophilus influenzae? I've just had a bad infection which has been hard to shake off and I don't want it again....

Has anyone been able to get immunised against haemophilus influenzae? I've just ...

1234emc

•5 days ago

14 Replies

Cll to Hodgkins lymphoma

My husband had Cll 11 years and started treatment in Oct, 2023 with Calquence. It was working, but not as effectively as desired. They then added Venclexta in...

My husband had Cll 11 years and started treatment in Oct, 2023 with Calquence. ...

Junebug20

•8 days ago

17 Replies

Starting to take acalabrutinib

My husband has relapsed after 9 years in remission ,his doctor is talking about starting him on acalabrutinib ,but he is worried about the side effects he...

My husband has relapsed after 9 years in remission ,his doctor is talking abo...

Takingchances

•20 days ago

27 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

•29 days ago

32 Replies

Increased side effects after 6-9 months on Venetoclax

Hi all. I'm happy with the positive results of the Gazyva/Venetoclax treatment I started last spring. I am less happy with the increase in the severity of...

Hi all. I'm happy with the positive results of the Gazyva/Venetoclax treatment ...

DMary

•1 month ago

35 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

•1 month ago

31 Replies

retinal bleed and Covid vaccination

good morning to all of you amazing members. I’m debating on getting my ninth Covid booster. Last fall I had a retinal bleed that occurred during a three...

good morning to all of you amazing members. I’m debating on getting my ninth C...

skipro

•10 days ago

16 Replies

Low vitamin d high serum ferritin

Hello My husband has been on watch and wait for 12 years. Due to a constant chronic cough he recently had a blood test which showed low vitamin D levels of 45...

Hello My husband has been on watch and wait for 12 years. Due to a constant chro...

Debs4

•6 days ago

12 Replies

21Bedlam21

Just had a text message from my Dr not my haematologist. Just had a chest x ray done. You have blunting round the edges of your lung fields. Is this anything...

Just had a text message from my Dr not my haematologist. Just had a chest x ray ...

21Bedlam21

•12 days ago

17 Replies

More Promising BCL-2's and a Trial opportunity

Fresh off the press from cllsociety.org, an insight about a new study with a BCL-2 drug called sonrotoclax in combination with zanubrutinib....

Fresh off the press from cllsociety.org, an insight about a new study with a BCL...

Smakwater

•20 days ago

22 Replies

WBC and Lymphocytes are increasing

Hello everyone, I am posting after a year. My wife was diagnosed with CLL in 2020. She is still in W&W form. Her WBC and Lymphocyte are climbing linearly....

Hello everyone, I am posting after a year. My wife was diagnosed with CLL in 20...

Sagarcanada

•3 days ago

8 Replies

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