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CLL Support

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All posts for March 2019

Ibrutinib and increased white count

My aunt is on her fourth dose of ibrutinib. Her white count went from 33000 to 114000. She was told that this could be a normal side effect and that it will...

My aunt is on her fourth dose of ibrutinib. Her white count went from 33000 to 1...

Marisa50

•5 years ago

11 Replies

Curling 123

Imbruvica appears to be the preferred therapy from reading these posts. As a senior and in Ontario, I wonder if it is covered by OHIP or Ontario Drug Program....

Imbruvica appears to be the preferred therapy from reading these posts. As a sen...

Curling123

•5 years ago

16 Replies

Help for Lymphoplasmacytic Lymphoma (LPL)

Anyone out there been diagnosed with Lymphoplasmacytic lymphoma ... a bone marrow and lymph circulating IGM blood cancer? I'm trying to do as much as I can...

Anyone out there been diagnosed with Lymphoplasmacytic lymphoma ... a bone marro...

heal11purple

•5 years ago

3 Replies

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Australian trials ongoing combining Ibrutinib and Venetoclax?

Newly diagnosed CLL, full results later today with Hematologist. I was wondering if any of these great options are available in Australia? I am currently...

Newly diagnosed CLL, full results later today with Hematologist. I was wondering...

BrightOneOz

•5 years ago

13 Replies

Erosive lichen planus and CLL

Hi I'm new here and newly diagnosed. In searching the cause of my rash and ulcers in mouth and throat we discovered the CLL. I'm watch and wait. I'm currently...

Hi I'm new here and newly diagnosed. In searching the cause of my rash and ulcer...

Gizmo60

•5 years ago

2 Replies

Heat/Hot/Internal

Hi...Just Joined...I have been to many docs about this internal Heat!...It is so very aweful...I do not have CLL But...I have no idea what is causing this. Any...

Hi...Just Joined...I have been to many docs about this internal Heat!...It is so...

Redmal

•5 years ago

5 Replies

Sebaceous warts on face

Diagnosed with a 8 mm nodule on lung, too small to do a biopsy, so it goes on watch and weight with a new ct scan in 3 months. I have several sebaceous warts...

Diagnosed with a 8 mm nodule on lung, too small to do a biopsy, so it goes on wa...

clifflee

•5 years ago

6 Replies

Side effects from imbruvica

I started taking imbruvica a week ago. The side effects are awful. Every joint in my body has hurt, I just feel bad. Please someone tell me this is normal and...

I started taking imbruvica a week ago. The side effects are awful. Every joint i...

DRADCLIFF

•5 years ago

41 Replies

diagnosed SLL in 2014

I was diagnosed SLL in 2014. Did not have any treatment - was on wait and watch. All this time my Lymph nodes keep growing everywhere. Check up and Blood test...

I was diagnosed SLL in 2014. Did not have any treatment - was on wait and watch....

SLL2014

•5 years ago

9 Replies

Looking forward to spring.

Still walking for health England February 2019.

BobG40

•5 years ago

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Diagnosed with CLL then after 4 weeks they found Leptomenangeal..very heavy Chemo for 8 weeks and Leptomenangeal improved. Been on imbruvica

After Chemo settled down, very few side effects in the last 15 months , continue to have bloods checked bi-monthly ..To think 18 months ago was on a walker...

After Chemo settled down, very few side effects in the last 15 months , continue...

Rance2222

•5 years ago

4 Replies

Sharp pains in Spleen

I have been experiencing sharp pains in my spleen. These occur in the middle of the night after I roll over following a sound sleep. I see my oncologist on...

I have been experiencing sharp pains in my spleen. These occur in the middle of...

umpireman

•5 years ago

20 Replies

Temporarily lowering dosage

I’d like to hear from those of you who temporarily lowered the dosage of Imbrutinib/Imbruvica. Please tell me if that made your side effects stop. I’m taking...

I’d like to hear from those of you who temporarily lowered the dosage of Imbruti...

Hidden

•5 years ago

21 Replies

I am new to the post and to CLL

I am new here.I was Just diagnosed have CLL in Dec of 2018. I am trying to learn all I can about CLL.

I am new here.I was Just diagnosed have CLL in Dec of 2018. I am trying to learn...

JoeStash

•5 years ago

6 Replies

White count down

White blood count reading two years ago was 29 now dropped to 21. Red blood count still very good. No specific changes in lifestyle. Pleased. Very unsure about...

White blood count reading two years ago was 29 now dropped to 21. Red blood coun...

Jasondorian

•5 years ago

4 Replies

I am CLL patient previusly treate with FR. I need to be treated again. I need some advice please.

I am a CLL patient. I have been previously treated with FR regimen for CLL. (Rituximaba plus Fludarabina) After 2.5 years, the WBC are around 30 K/ul, and...

I am a CLL patient. I have been previously treated with FR regimen for CLL. (Ri...

tropicsurvivor

•5 years ago

16 Replies

Low Hb and Neutrophils post FCRchemo for CLL

Just wondering if others have experienced low HB and neutrophils post chemo. Finished chemo Sept 2018. Had a number of infections since which caused my...

Just wondering if others have experienced low HB and neutrophils post chemo. Fin...

Kingfisher20

•5 years ago

4 Replies

Bio Resonant Frequencies

HI, I was just watching a video on Ted about resonance frequencies that are used to treat cancer and even talk about Leukemia, by doing a more thorough search...

HI, I was just watching a video on Ted about resonance frequencies that are use...

C3PO1

•5 years ago

13 Replies

Still fighting mouthsores

After one year on Imbruvica, I’m still battling mouthsores. I take Selunium and Folic Acid (both dr recommend), use a salt water rinse, have tried a couple...

After one year on Imbruvica, I’m still battling mouthsores. I take Selunium and ...

Survivor1951

•5 years ago

12 Replies

Blocked sinuses...again

This is the 3rd time in 6 months. My sinuses and nose are so plugged that literally, no air is getting through. Xray of sinus in January showed NO airspace at...

This is the 3rd time in 6 months. My sinuses and nose are so plugged that litera...

Hilomom

•5 years ago

4 Replies

CLL Patient and Caregiver Educational Forum at MDACC in Houston this Saturday

Hi, Crazy travel schedule. in the last few weeks, I have been to Charlotte, Boston, Seattle, Portland, Philadelphia, and this Saturday, I‘ll be in Houston at...

Hi, Crazy travel schedule. in the last few weeks, I have been to Charlotte, Bost...

bkoffman

CLL CURE Hero•5 years ago

1 Reply

Pain swallowing and tongue sores

I started taking 420 mg Imbruvica in December. After about two weeks of many side effects, I felt fine. Then these past few days I’ve had pain swallowing and...

I started taking 420 mg Imbruvica in December. After about two weeks of many sid...

Hidden

•5 years ago

9 Replies

New to this community - CLL diagnosis Feb 2018

I was diagnosed with CLL in February 2018, following a period of feeling very tired, low Hb, shortness of breath and night sweats. After numerous blood tests,...

I was diagnosed with CLL in February 2018, following a period of feeling very ti...

Kingfisher20

•5 years ago

8 Replies

WBC GOING UP ON IMBRUVICA

Hi all, benn on imbuvica for a month now, wbc was at 111 when diagnosed on jan 13. continues to go up. All my lymph nodes are back to normal, neck, arm pits...

Hi all, benn on imbuvica for a month now, wbc was at 111 when diagnosed on jan 1...

randya

•5 years ago

9 Replies

Ibrutinib and hair color/perms

Has anybody taking ibrutinib had any problems with getting their hair colored or permed?

Has anybody taking ibrutinib had any problems with getting their hair colored or...

Marisa50

•5 years ago

11 Replies

Concerned 38 year old. Could I have CLL!

Hi all I’m writing for advice really. I was a nurse so have a little knowledge (not of CLL) Without wanting to sound like a hypochondriac I am a little...

Hi all I’m writing for advice really. I was a nurse so have a little knowledge (...

1980loobylou

•5 years ago

10 Replies

Curling 123

Anyone from Ontario know if OHIP now covers Imbruvica? What I have found out about it is dated 2014 and since an oral drug, may not be covered. Get with it...

Anyone from Ontario know if OHIP now covers Imbruvica? What I have found out abo...

Curling123

•5 years ago

12 Replies

11q deletion, my experience and short story

I just finished reading a post concerning an 11q deletion being mutated or not. I have the 11q deletion, and have had it since first diagnosed in 2009 at age...

I just finished reading a post concerning an 11q deletion being mutated or not. ...

steve5441

•5 years ago

4 Replies

Weight loss

Has anyone lost weight on venetoclax?

Deweydog

•5 years ago

3 Replies

Split Skin on Fingertips... Newly Found Treatment

I’m quite lucky as I’ve experienced only a few of the common Imbruvica side effects. A minor but very troublesome one being severe cracks in the skin on my...

I’m quite lucky as I’ve experienced only a few of the common Imbruvica side effe...

RJR1

•5 years ago

34 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for March 2019

Ibrutinib and increased white count

Curling 123

Help for Lymphoplasmacytic Lymphoma (LPL)

Australian trials ongoing combining Ibrutinib and Venetoclax?

Erosive lichen planus and CLL

Heat/Hot/Internal

Sebaceous warts on face

Side effects from imbruvica

diagnosed SLL in 2014

Looking forward to spring.

Diagnosed with CLL then after 4 weeks they found Leptomenangeal..very heavy Chemo for 8 weeks and Leptomenangeal improved. Been on imbruvica

Sharp pains in Spleen

Temporarily lowering dosage

I am new to the post and to CLL

White count down

I am CLL patient previusly treate with FR. I need to be treated again. I need some advice please.

Low Hb and Neutrophils post FCRchemo for CLL

Bio Resonant Frequencies

Still fighting mouthsores

Blocked sinuses...again

CLL Patient and Caregiver Educational Forum at MDACC in Houston this Saturday

Pain swallowing and tongue sores

New to this community - CLL diagnosis Feb 2018

WBC GOING UP ON IMBRUVICA

Ibrutinib and hair color/perms

Concerned 38 year old. Could I have CLL!

Curling 123

11q deletion, my experience and short story

Weight loss

Split Skin on Fingertips... Newly Found Treatment

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