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CLL Support

23,337 members•40,046 posts

All posts for January 2020

2 weeks of Imbruvica update

I had some intestinal issues with beginning of week one but they have gone away. No side effects to speak of. I felt good before I started taking it and still...

I had some intestinal issues with beginning of week one but they have gone away....

12Caine12

•5 years ago

6 Replies

Disruption of Blood Cancer Cells by Ultrasound

This article may be of interest to people like us: https://physicsworld.com/a/tuned-ultrasound-selectively-disrupts-the-structure-of-cancer-cells

This article may be of interest to people like us: https://physicsworld.com/a/tu...

shornoff

•5 years ago

5 Replies

Why Is the Immunoglobulin Heavy Chain Gene Mutation Status a Prognostic Indicator in CLL? - Dr Keating

A complex but interesting read Acta Haematol August 2018;140:51–54 The immunoglobulin heavy chain gene (IgHV) mutation status correlates with the clinical...

A complex but interesting read Acta Haematol August 2018;140:51–54 The immunogl...

Jm954

Administrator•5 years ago

12 Replies

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Unmutated

Today I was told by my Onc that my IGHV was unmutated. The rest of my markers were normal, but the IGHV being unmutated isnt the only indicator but the...

Today I was told by my Onc that my IGHV was unmutated. The rest of my markers we...

JayPay

•5 years ago

22 Replies

IGHV inconclusive

My FISH report shows negative result, chromosome analysis shows no changes good or bad - normal, and ighv is inconclusive. Is there anyone else who has these...

My FISH report shows negative result, chromosome analysis shows no changes good ...

May1270

•5 years ago

6 Replies

going downhill

My husband has CLL dx in 2013. Ok until this last year. Now has gone downhill. He is not to computer friendly so I am doing this. He was started on VENETOCLAX...

My husband has CLL dx in 2013. Ok until this last year. Now has gone downhill. H...

Gogldn

•5 years ago

5 Replies

On imbruvica for two months

Just went to the oncologist today blood work is good white blood cells are down to 45,000 bloodwork looks good this pill is A miracle besides the common side...

Just went to the oncologist today blood work is good white blood cells are down ...

littledab

•5 years ago

14 Replies

Imbruvica Bone Pain

Good Morning, I have been on 280 mg of Imbruvica for almost 4 months and most of the side effects are manageable. However, I am getting sporadic pain and...

Good Morning, I have been on 280 mg of Imbruvica for almost 4 months and most of...

brooklyn7672

•5 years ago

8 Replies

Bright vs dim CD20 and bright lambda light chain

Hello. Has anyone had a bright CD20 and Bright Lambda light chain on BMB and if so, how has that effected your W&W or treatments

Hello. Has anyone had a bright CD20 and Bright Lambda light chain on BMB and i...

Madison1995

•5 years ago

1 Reply

All normal fish report. No deetions

Can you still have a good prognosis and possible long W&W with no deletions on the fish report, I realize it’s good to have 13q but mine was normal as well...

Can you still have a good prognosis and possible long W&W with no deletions on t...

Madison1995

•5 years ago

33 Replies

Ok previously known as Jenny 2020, but had to change my user name and password

Now it is Madison1995. Craziness. So all the messages everyone sent to me I can’t see. 😢

Now it is Madison1995. Craziness. So all the messages everyone sent to me I ...

Madison1995

•5 years ago

7 Replies

Does anyone know how to change the password

I can’t see any of my pm or messages any longer

Madison1995

•5 years ago

1 Reply

Bone marrow looking for MRD getting a surprise in the blood test, plus Dr. Kipps on fixed duration front line therapy

I just blogged on how my recent blood work and bone marrow biopsy looking for MRD status could have a big impact on everything. See:...

I just blogged on how my recent blood work and bone marrow biopsy looking for MR...

bkoffman

CLL CURE Hero•5 years ago

30 Replies

Anyone in their 40 on this form.

Good morning. I was just wondering if anyone that has CLL on this forum is my age that would be willing to discuss their fears and concerns about there...

Good morning. I was just wondering if anyone that has CLL on this forum is my ...

Jenny2020

•5 years ago

45 Replies

Any Complementary Therapies or Practitioners to assist RITUXAN therapy for Low Platelets caused by Virus?

Background: 5 years W&W CLL, however, regular severe infections and finally a severe viral-induced ITP in October resulting in 1 platelet and 9 day...

Background: 5 years W&W CLL, however, regular severe infections and finally a se...

jawdfs

•5 years ago

3 Replies

3 weeks on Ibrutinib

Saw my doctor today after 3 weeks on ibrutinib. WBC doubled again in 6 weeks and is now 101.70 up from 53. Needless to say I am a little nervous but my...

Saw my doctor today after 3 weeks on ibrutinib. WBC doubled again in 6 weeks and...

Marber

•5 years ago

7 Replies

Protection Mask

Hi...Does anyone know which mask works best when traveling on an airplane. I have a compromised immune system due to CLL. Not in remission yet. Thanks you.

Hi...Does anyone know which mask works best when traveling on an airplane. I hav...

dcfrey

•5 years ago

7 Replies

New to CLL and questions

Hi, I have been lurking and reading up on CLL but haven't really found what I am looking for. I have learned more about CLL and that has been extremely...

Hi, I have been lurking and reading up on CLL but haven't really found what I am...

Dutchbunch5

•5 years ago

9 Replies

Which foods should you eat together and which separately?

I'm at the wait-and-see stage with my CLL and have been hoping to delay treatment by eating anti-cancer foods. I'm a researcher with a PhD, so my first...

I'm at the wait-and-see stage with my CLL and have been hoping to delay treatmen...

HowardR

•5 years ago

25 Replies

‘The time to worry is now’: The coronavirus in China could threaten pharma’s ingredient sourcing - STAT - January 27, 2020

As if we don't already have enough to worry about. From the article: Roughly 80% of active ingredients used by commercial sources to produce...

As if we don't already have enough to worry about. From the article: Roughly 80...

cujoe

•5 years ago

2 Replies

Final diagnosis

Hi I just wanted to reach out to all of you who helped me the past month with all of the unknowns. I saw the specialist today and I was diagnosed with...

Hi I just wanted to reach out to all of you who helped me the past month with ...

Jenny2020

•5 years ago

37 Replies

Video interviews; CLL 'Hot Topics and Maturing Data' ASH 2019: Prof John Gribben, Prof Pete Hillmen, Dr George Follows & Dr Renata Walewska

In December, the Leukaemia Care Patient Advocacy team attended the annual American Society of Hematology (ASH) conference in Florida, where the latest research...

In December, the Leukaemia Care Patient Advocacy team attended the annual Americ...

HAIRBEAR_UK

Founder Admin•5 years ago

5 Replies

Beta glucan

Here is a study you may find interesting https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4573786/#S1title

Here is a study you may find interesting https://www.ncbi.nlm.nih.gov/pmc/artic...

tom9676

•5 years ago

10 Replies

I was diagnosed 8 years ago today

I was diagnosed 8 years ago today, as a matter of fact, and I completed my sixth phase of therapy a few weeks ago when I had to get off of Acalabrutinib...

I was diagnosed 8 years ago today, as a matter of fact, and I completed my sixth...

KevinCLLITP

•5 years ago

13 Replies

CLL and anemia (DX of pure red cell aplasia)

My husband's CLL began increasing quickly last fall, and hemoglobin/RBC's started falling (Doc said b/c WBC's were crowding out the bone marrow back then......

My husband's CLL began increasing quickly last fall, and hemoglobin/RBC's starte...

CLLcaregiver-CO

•5 years ago

1 Reply

DUBSET positive

Hi. Does anyone know what SUBSET positive means in lamen terms? I was Subset positive for cd10,cd23,cd 5 on bmb. Just don’t understand the terminology...

Hi. Does anyone know what SUBSET positive means in lamen terms? I was Subset p...

Jenny2020

•5 years ago

2 Replies

Turkey Tail Mushrooms for Cancer Treatment

I understand that Turkey Tail Mushrooms are a recognized cancer treatment in China and Japan. Does anyone have experience with this treatment for CLL/SLL? If...

I understand that Turkey Tail Mushrooms are a recognized cancer treatment in Chi...

TaiPan4

•5 years ago

17 Replies

Myalgia and arthralgia

Anyone experience these issues 6 months after starting Ibrutinib?

Beezerdmd

•5 years ago

10 Replies

Head cold and aching body

Hi what do you all do if you just get the normal cold and generally not feel great? I don’t want to bother doctor with just a cold but hubby always says you...

Hi what do you all do if you just get the normal cold and generally not feel gre...

robertsw

•5 years ago

5 Replies

Platelets and neutrophils dropping

Hi everybody. After my taking Ibrutinib and venetoclax for 15 months my wbc are within normal range and my lymph nodes are normal. Now my platelets are...

Hi everybody. After my taking Ibrutinib and venetoclax for 15 months my wbc are ...

Ninagram

•5 years ago

2 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2020

2 weeks of Imbruvica update

Disruption of Blood Cancer Cells by Ultrasound

Why Is the Immunoglobulin Heavy Chain Gene Mutation Status a Prognostic Indicator in CLL? - Dr Keating

Unmutated

IGHV inconclusive

going downhill

On imbruvica for two months

Imbruvica Bone Pain

Bright vs dim CD20 and bright lambda light chain

All normal fish report. No deetions

Ok previously known as Jenny 2020, but had to change my user name and password

Does anyone know how to change the password

Bone marrow looking for MRD getting a surprise in the blood test, plus Dr. Kipps on fixed duration front line therapy

Anyone in their 40 on this form.

Any Complementary Therapies or Practitioners to assist RITUXAN therapy for Low Platelets caused by Virus?

3 weeks on Ibrutinib

Protection Mask

New to CLL and questions

Which foods should you eat together and which separately?

‘The time to worry is now’: The coronavirus in China could threaten pharma’s ingredient sourcing - STAT - January 27, 2020

Final diagnosis

Video interviews; CLL 'Hot Topics and Maturing Data' ASH 2019: Prof John Gribben, Prof Pete Hillmen, Dr George Follows & Dr Renata Walewska

Beta glucan

I was diagnosed 8 years ago today

CLL and anemia (DX of pure red cell aplasia)

DUBSET positive

Turkey Tail Mushrooms for Cancer Treatment

Myalgia and arthralgia

Head cold and aching body

Platelets and neutrophils dropping

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