Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for November 2017

Have Relapsed From FCR and looking for best choice for Round Two

Was diagnosed cll 6 yrs ago. At age 49 first time Id ever been to doctor in my life. Living in Canada. Never went back to Doctor for 4 yrs didn't want to take...

Was diagnosed cll 6 yrs ago. At age 49 first time Id ever been to doctor in my l...

CLLCOLIN

•7 years ago

47 Replies

Mantel Cell Lymphomia

My partner was diagnosed with MCL three years ago. He underwent chemo and then had stem cell transplant. Recently, a blood test has indicated that his white...

My partner was diagnosed with MCL three years ago. He underwent chemo and then ...

pollyg2016

•7 years ago

3 Replies

Mouth Sores cleared

Hi, I am on Imbruvica and like many of us suffered from mouth sores for more then a year. I tried many remedies from prescription magic liquids against fungi...

Hi, I am on Imbruvica and like many of us suffered from mouth sores for more the...

kohelet

•7 years ago

24 Replies

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Tired

Hi.. I’m cll stage 0 (discovered during blood work for knee replacement surgery). My red cell counts are normal, but I still feel fatigue often. I’m 4 months...

Hi.. I’m cll stage 0 (discovered during blood work for knee replacement surgery)...

Kimhice

•7 years ago

7 Replies

Night sweats on ibrutinib

Been on ibrutinib 7 month's doing well infact last week at my check up my consultant told me my bloods were near normal.but last night woke up with me night...

Been on ibrutinib 7 month's doing well infact last week at my check up my consul...

cartwheels

•7 years ago

3 Replies

CLL/Enlarged Lymph Nodes

I'm a 68 y.o. female diagnosed with CLL in 2007. So far no treatment needed however my iGg is low and I have to have 3 infusions spaced 28 days apart....

I'm a 68 y.o. female diagnosed with CLL in 2007. So far no treatment needed how...

Ladydi49

•7 years ago

16 Replies

WBC is 30 now

I went to my 3 month checkup with my oncologist today and my wbc went from 21 to 30. Hope I’m just fighting off something. Lymph nodes haven’t changed and...

I went to my 3 month checkup with my oncologist today and my wbc went from 21 to...

MichelleM61

•7 years ago

8 Replies

New diagnosis

My son in law 46. Was just diagnosed. I am trying to learn as much as possible about the disease

My son in law 46. Was just diagnosed. I am trying to learn as much as possible a...

Sammi63

•7 years ago

7 Replies

Diagnosis

After being told categorically by a junior docor 4 weeks ago that it WAS NOT CLL as I thought from the results, worrying about which other NHL is was going to...

After being told categorically by a junior docor 4 weeks ago that it WAS NOT CLL...

shellysexbomb

•7 years ago

1 Reply

CLL & Fatigue

Hi, I"m new to this support group. In the last 6 months my husband has been suffering from very debilitating mental and physical fatigue. In 2013 he was...

Hi, I"m new to this support group. In the last 6 months my husband has been suff...

Jade9

•7 years ago

10 Replies

Ibrutinib Dose Reduction - An ASH Abstract

In yesterday's discussion about the effect of ibrutinib on hair-texture, the topic of ibrutinib dose reduction was mentioned (...

In yesterday's discussion about the effect of ibrutinib on hair-texture, the top...

gardening-girl

•7 years ago

3 Replies

Looking for Venclexta Support

Happy to be in this group and read all your stories. They have been supportive. My husband was diagnosed with CLL in 2007 August. His counts were high then WBC...

Happy to be in this group and read all your stories. They have been supportive. ...

Hidden

•7 years ago

8 Replies

Nodes in neck.

I believe I have had CLL for at least 6 years, but diagnosed 3 years ago. I have always had small nodes in the neck; sometimes they bigger and other times...

I believe I have had CLL for at least 6 years, but diagnosed 3 years ago. I have...

mpaull

•7 years ago

2 Replies

Low Neutrophils

What is the best way to increase low neutrophils? Any supplements maybe? I read something about PeakImmune4 here. Anybody taking it and can give me some...

What is the best way to increase low neutrophils? Any supplements maybe? I read ...

Naka

•7 years ago

7 Replies

Drugs therepy or BMT

Had a good chat with my consultant following the good news that after 7 month's on ibrutinib with 17p I'm doing very well. Took the opportunity to discuss what...

Had a good chat with my consultant following the good news that after 7 month's ...

cartwheels

•7 years ago

22 Replies

Hair texture

Has any one on Imbrociva had a problem with there hair texture turning into like a brillo pad?

Has any one on Imbrociva had a problem with there hair texture turning into l...

betmaxbaby

•7 years ago

13 Replies

Stage 1/2 CLL and no follow-up visits?

Hello all! I have been a lurker for about a month. My 57 yo husband was recently diagnosed with CLL. Diagnosis was confirmed by flow cytometry. He has swollen...

Hello all! I have been a lurker for about a month. My 57 yo husband was recently...

wildred

•7 years ago

42 Replies

Anxiety

I have been on imbruvica for 1.5 years and have had anxiety off and on and increasd bp also all off and on mostly my life is much improved blood draws are...

I have been on imbruvica for 1.5 years and have had anxiety off and on and incre...

123tag

•7 years ago

8 Replies

Decreased WBC's

My husband started Imbruvica 5weeks ago , along with Allopurinol and an Infusion once a month of IVIG. The concern I have is that when he started his WBC's...

My husband started Imbruvica 5weeks ago , along with Allopurinol and an Infusion...

Chintzy

•7 years ago

5 Replies

Reading rest results

Fish test says expressing cd5, cd19,cd20 and cd23. Zap 70 positive Cb49d positive Ighv unmutated So what does this mean?

Fish test says expressing cd5, cd19,cd20 and cd23. Zap 70 positive Cb49d positiv...

aremmick

•7 years ago

4 Replies

The New Shingles Vaccine. What it means for CL patients may depend on where you live.

If you haven't had time to participate in our 2017 CLL Patient Survey, please consider doing it today. You can participate online or request a paper survey....

If you haven't had time to participate in our 2017 CLL Patient Survey, please co...

bkoffman

CLL CURE Hero•7 years ago

2 Replies

Ibrutinib at 1 month

Hi, So it has been a month and 2 days since I started Ibrutinib. My ONC first had me take just 2 pills daily for the first two weeks, the intention was to...

Hi, So it has been a month and 2 days since I started Ibrutinib. My ONC first ...

Mellyjake

•7 years ago

4 Replies

IBRUTINIB & Anxiety Attacks

Hi Everyone - So this is my second attempt on IB. My first started out with 5 days of severe headaches and then chest discomfort and stress. Turns out my blood...

Hi Everyone - So this is my second attempt on IB. My first started out with 5 da...

Roydeane

•7 years ago

33 Replies

CLL and Dizzy spells

My sister is 42 diagnosed with CLL unmutated in Sep 2017 she is on a watch and wait. We are new to trying to understand CLL and be in tune with her symptoms...

My sister is 42 diagnosed with CLL unmutated in Sep 2017 she is on a watch and w...

JessienPete

•7 years ago

14 Replies

CLLSA Conference London 7 Nov 2017 slides available

The slides from presentations given at the CLLSA conference in London at Bart's on the 7th of Nov 2017 are now available on the main site....

The slides from presentations given at the CLLSA conference in London at Bart's ...

Myrddin

•7 years ago

3 Replies

NICE publish guidance to enable NHS England commissioning of Venetoclax for treating CLL; within CDF managed access agreement.

Today The National Institute for Health and Care Excellence (NICE) have published technology appraisal guidance [TA487]......

Today The National Institute for Health and Care Excellence (NICE) have publishe...

HAIRBEAR_UK

Founder Admin•7 years ago

5 Replies

When will I need treatment? Is Watch and Wait still the best option with newer treatments?

Recent updates 2023: https://www.patientpower.info/cll-answers-now-should-i-still-watch-and-wait 2021:...

Recent updates 2023: https://www.patientpower.info/cll-answers-now-should-i-sti...

lankisterguy

Volunteer•7 years ago

13 Replies

Ibrutinib related issues

I am wondering if anyone here has info concerning what is next line of treatment if Ibrutinib dos no longer work or as my body seems to be developing...

I am wondering if anyone here has info concerning what is next line of treatme...

walkingspirit33

•7 years ago

23 Replies

Update on kidney stone.

Well all went well with the stent. Now on 400mg Ventoclax and apart from feeling tired all seems good. Hubby will go in overnight after Christmas to have...

Well all went well with the stent. Now on 400mg Ventoclax and apart from feeling...

Pat1954

•7 years ago

1 Reply

Need help reading test results - mutated vs unmutated

As I continue to educate myself it appears that mutated is better than unmutated. I have had both fish and flow tests and although I have just 13q deletion no...

As I continue to educate myself it appears that mutated is better than unmutated...

Superdad3

•7 years ago

28 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for November 2017

Have Relapsed From FCR and looking for best choice for Round Two

Mantel Cell Lymphomia

Mouth Sores cleared

Tired

Night sweats on ibrutinib

CLL/Enlarged Lymph Nodes

WBC is 30 now

New diagnosis

Diagnosis

CLL & Fatigue

Ibrutinib Dose Reduction - An ASH Abstract

Looking for Venclexta Support

Nodes in neck.

Low Neutrophils

Drugs therepy or BMT

Hair texture

Stage 1/2 CLL and no follow-up visits?

Anxiety

Decreased WBC's

Reading rest results

The New Shingles Vaccine. What it means for CL patients may depend on where you live.

Ibrutinib at 1 month

IBRUTINIB & Anxiety Attacks

CLL and Dizzy spells

CLLSA Conference London 7 Nov 2017 slides available

NICE publish guidance to enable NHS England commissioning of Venetoclax for treating CLL; within CDF managed access agreement.

When will I need treatment? Is Watch and Wait still the best option with newer treatments?

Ibrutinib related issues

Update on kidney stone.

Need help reading test results - mutated vs unmutated

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