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CLL Support

22,867 members • 39,229 posts

All posts for January 2020

Rough time.

Just got out of hospital after 2 weeks with fungal pneummia. Im neutropenic wbc is 1.6. Platelets are dangerously low. Meeting with my oncology team on...

Just got out of hospital after 2 weeks with fungal pneummia. Im neutropenic wbc...

hossbball

•5 years ago

8 Replies

Antibotics for headcold, diahrrea?

A headcold, diahrrea coming on... should I go to doctor or wait it out.?.. Haven't taken antibiotics in a year or so... have been on W&W for couple of years,...

A headcold, diahrrea coming on... should I go to doctor or wait it out.?.. Haven...

Butitisme

•5 years ago

5 Replies

Blood Thinners

Hi everyone, I’m not in treatment yet, as my WBC is 33, lymph’s 87, minor lymph nodes, platelets normal range, nevertheless I am concerned as I understand...

Hi everyone, I’m not in treatment yet, as my WBC is 33, lymph’s 87, minor lymph ...

Rhythmauthor1

•5 years ago

10 Replies

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Shingrix vacination

I suffer from CLL. I would like the Shingrix vacanation. It seems so difficult to obtain it in England. Does anybody has some information? Most appreciated....

I suffer from CLL. I would like the Shingrix vacanation. It seems so difficult t...

eggemma

•5 years ago

6 Replies

I'm new to this group. You have helped me find he the correct way to describe my fatigue. Thank you!

Here's what I am feeling: 1. my legs feel weak as if they can't support me any more sort of like jelly. 2. I get very tired going up stairs 3. I have...

Here's what I am feeling: 1. my legs feel weak as if they can't support me any m...

peggyp14

•5 years ago

13 Replies

Does anyone else have B-cell NHL-MALT?

I am currently in treatment beginning Dec 2018-May 2019 of Rituxan and Bendumustine. I completed second round yesterday. Did anyone have good results with...

I am currently in treatment beginning Dec 2018-May 2019 of Rituxan and Bendumust...

Kitton

•5 years ago

6 Replies

Travel Insurance

I am currently taking Ibrutinib as part of the Flair trial for CLL. I am hoping to go to Canada on holiday to celebrate my retirement but am struggling to find...

I am currently taking Ibrutinib as part of the Flair trial for CLL. I am hoping ...

Severest

•5 years ago

21 Replies

Variant CLL

Would anyone know what a variant of CLL means

Jenny2020

•5 years ago

12 Replies

CT Scan

Why do we need CT scans during treatment? Can't they just do a bone marrow biopsy? That will tell you how much cll is in the marrow, which is the bottom line....

Why do we need CT scans during treatment? Can't they just do a bone marrow biops...

12Caine12

•5 years ago

20 Replies

Are there different IgG formulations for IVIG ?

I thought I read a year or so ago that there may be different formulations of IgG; some better and some not as good. Would someone confirm whether this...

I thought I read a year or so ago that there may be different formulations of Ig...

markjeep51

•5 years ago

9 Replies

Imbruvica and Muscle Pain

I'm 5 years diagnosed and approaching 4 on imbruvica. All numbers are good, and until recently only the fingernail and split skin issues. In the last few...

I'm 5 years diagnosed and approaching 4 on imbruvica. All numbers are good, and ...

RJR1

•5 years ago

3 Replies

Imbruvica and BM issues

Imbruvica 280mg. Hello, Gooz here again, Started this med a few days ago. I was told loose stool is a very common and to take Imodium (4 max daily) to help...

Imbruvica 280mg. Hello, Gooz here again, Started this med a few days ago. I was ...

goooz

•5 years ago

6 Replies

My husband's blood still going in the right direction, but gets unexplained bruising.

Husband got CLL and went to the hospital for his chemo check up, and his blood going in the right direction, but he gets unexplained bruising which they made a...

Husband got CLL and went to the hospital for his chemo check up, and his blood g...

BayfieldAnnette

•5 years ago

4 Replies

B cell receptor, infographic and ClonoSEQ approval for CLL

Hi, Dr. Burger at iwCLL 2019, discusses the importance of the B cell receptor and blocking it in CLL. See:...

Hi, Dr. Burger at iwCLL 2019, discusses the importance of the B cell receptor an...

bkoffman

CLL CURE Hero•5 years ago

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Today I start taking Imbruvica

I'm a 65 YO male, in excellent physical condition with no other ailments other than CLL. I have all the good genetic markers. I've had the disease for...

I'm a 65 YO male, in excellent physical condition with no other ailments other t...

12Caine12

•5 years ago

6 Replies

Protein Kinase Inhibitors Promise to make CLL Chemotherapy more effective

My son just forwarded the following article to me. It's the second one that I've read (and posted here) about Protein Kinase Inhibitors being a new...

My son just forwarded the following article to me. It's the second one that I've...

HowardR

•5 years ago

1 Reply

5

Gooz here. Hello folks, I'm on my 2nd day of Imbruvica (280mg). Yesterday everything fine with the BM's, today was another story: very loose, very soft and...

Gooz here. Hello folks, I'm on my 2nd day of Imbruvica (280mg). Yesterday everyt...

goooz

•5 years ago

4 Replies

ITP and shingles

If you've had ITP, can you take acyclovir? As having been given these for shingles, but knowing that they lower your immune system,? Cheers

If you've had ITP, can you take acyclovir? As having been given these for shingl...

Mazmeadows

•5 years ago

2 Replies

Just got MRD negative 🎉

Excited to say I’m MRD negative 🎉🎉 🎉 I have been in clinical trial for relapsed CLL for 14 months and am on Ibrutinib and Venetoclax. I made it through the...

Excited to say I’m MRD negative 🎉🎉 🎉 I have been in clinical trial for relaps...

Catnap7

•5 years ago

77 Replies

Real-World Sequence Patterns of Novel Agents in CLL

In real-world settings, most (nearly 93%) of patients with chronic lymphocytic leukemia (CLL) receive novel-agent therapies — and they receive these most often...

In real-world settings, most (nearly 93%) of patients with chronic lymphocytic l...

Jm954

Administrator•5 years ago

2 Replies

Complete Remission

I was at the hospital on the 14th. After getting back my results my doctor told me that I was in complete remission, and no signs of any hemolytic Anemia left...

I was at the hospital on the 14th. After getting back my results my doctor told ...

habsrule

•5 years ago

33 Replies

Treatment With PI3K Inhibitors Is Associated With a Number of Adverse Events and Toxicities

Treatment with phosphatidylinositol 3-kinase (PI3K) inhibitors has been shown to improve survival in patients with B cell malignancies. However, according to a...

Treatment with phosphatidylinositol 3-kinase (PI3K) inhibitors has been shown to...

Jm954

Administrator•5 years ago

4 Replies

Study finds targeting nearby ‘normal’ cells could improve survival rates

Researchers found that lymphoma and leukaemia cells actually cause inflammation in stroma cells and that these cells also produce a protein, called kinase C...

Researchers found that lymphoma and leukaemia cells actually cause inflammation ...

Jm954

Administrator•5 years ago

5 Replies

why do i have new categories latest cbc/diff. test

my latest cbc/diff test has 3 new categories. META,MYELOCYTE,PROMYELOCYTE, i cannot really find a good answer on the web that i understand . just wondering.

my latest cbc/diff test has 3 new categories. META,MYELOCYTE,PROMYELOCYTE, i ...

Hidden

•5 years ago

5 Replies

Update to My Original Post Stopping Acalabrutinib

I had pneumonia dx mid Nov and had received antibiotics 3 times in 1 1/2 months, yet still was not well or improving. My GI tract was in an uproar, and I was...

I had pneumonia dx mid Nov and had received antibiotics 3 times in 1 1/2 months,...

Fulart

•5 years ago

11 Replies

TECHNICAL ISSUES WHEN USING SAFARI

Just an FYI, For the past 4 weeks or so, I haven't been able to get to any posts using my regular browser, Safari. I am able to access the sight using Firefox...

Just an FYI, For the past 4 weeks or so, I haven't been able to get to any posts...

Mrsminton

•5 years ago

8 Replies

Rash on hands (Erythematous rash to the hypothenar eminence)

Hello y'all....it has been some time since I have posted anything. My eight months on ibrutinib have provided terrific results with my WBC now down to 26 (from...

Hello y'all....it has been some time since I have posted anything. My eight mont...

jdolinger

•5 years ago

13 Replies

Breast Cancer/CLL

I thought I would give you an update. In December they removed the tumor with clear margins and clear lymph nodes. I was so excited until they told me I’m...

I thought I would give you an update. In December they removed the tumor with cl...

migirlusa

•5 years ago

15 Replies

Generosity

I’m doing the worlds greatest shave here in Australia for my husband and all you CLLers. The generosity of people- especially in light of the drought and...

I’m doing the worlds greatest shave here in Australia for my husband and all you...

catnapcrew

•5 years ago

1 Reply

$$$ HELP. Just need to know what these new drugs cost.

Just saw Ivotedfornixon's post and just realized how little I know about Ibrutinib and all the other pills out there. I did BR 10/16 to 2/17. According to NCCN...

Just saw Ivotedfornixon's post and just realized how little I know about Ibrutin...

louie48

•5 years ago

21 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2020

Rough time.

Antibotics for headcold, diahrrea?

Blood Thinners

Shingrix vacination

I'm new to this group. You have helped me find he the correct way to describe my fatigue. Thank you!

Does anyone else have B-cell NHL-MALT?

Travel Insurance

Variant CLL

CT Scan

Are there different IgG formulations for IVIG ?

Imbruvica and Muscle Pain

Imbruvica and BM issues

My husband's blood still going in the right direction, but gets unexplained bruising.

B cell receptor, infographic and ClonoSEQ approval for CLL

Today I start taking Imbruvica

Protein Kinase Inhibitors Promise to make CLL Chemotherapy more effective

5

ITP and shingles

Just got MRD negative 🎉

Real-World Sequence Patterns of Novel Agents in CLL

Complete Remission

Treatment With PI3K Inhibitors Is Associated With a Number of Adverse Events and Toxicities

Study finds targeting nearby ‘normal’ cells could improve survival rates

why do i have new categories latest cbc/diff. test

Update to My Original Post Stopping Acalabrutinib

TECHNICAL ISSUES WHEN USING SAFARI

Rash on hands (Erythematous rash to the hypothenar eminence)

Breast Cancer/CLL

Generosity

$$$ HELP. Just need to know what these new drugs cost.

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