Posts - CLL Support | HealthUnlocked

CLL Support

22,512 members • 38,667 posts

All posts for November 2020

Reclast for osteoporosis as CLL patient

Hi Folks, I had a Reclast injection last year to help with weak bones. It may be completely unrelated, but shortly after my CLL worsened, requiring...

Hi Folks, I had a Reclast injection last year to help with weak bones. It may ...

Emilerep

•3 years ago

8 Replies

Superfood Powders?

Nothing like real food! But what are your thoughts about Organic Superfood Powders? These are not like supplement pills... you don’t even know what’s in it!......

Nothing like real food! But what are your thoughts about Organic Superfood Powde...

Laura3mini

•3 years ago

19 Replies

Immune Booster

I am on W&W since 2017. I was just wondering would it be safe to take ProArgi9 as an immune booster. It says one of its side effects is blood abnormalities. It...

I am on W&W since 2017. I was just wondering would it be safe to take ProArgi9 a...

EPPL

•3 years ago

19 Replies

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Shingles vaccine

Are you getting the shingles vaccine?

Lem1

•3 years ago

38 Replies

Desperate for answers please...

Hi all. My 85yo Dad is now in a critical condition. He has rampant hemalosis, hemoglobin of 70, extreme fatigue and as of today, excrutiating pain in his back,...

Hi all. My 85yo Dad is now in a critical condition. He has rampant hemalosis, he...

TKB2020

•3 years ago

28 Replies

Neutropenia and Imbruvica

What happens when you are getting neutropenic while taking Imbruvica ? Is your dose is reduced, or Imbruvica is stopped until numbers improve, or something...

What happens when you are getting neutropenic while taking Imbruvica ? Is your d...

MikeOr

•3 years ago

5 Replies

Fenbendazol - worth a try?

I'm new here.....anyone have an opinion / experience using Fenbendazol (Panacur C, aka FebBen), per article in 'Alternatives' by Dr. David Williams (Vol. 22...

I'm new here.....anyone have an opinion / experience using Fenbendazol (Panacur ...

ElliptiGOuser

•3 years ago

9 Replies

Vaccination program training & guidance materials

https://www.gov.uk/government/publications/covid-19-vaccination-programme-guidance-for-healthcare-practitioners...

https://www.gov.uk/government/publications/covid-19-vaccination-programme-guidan...

zaax

•3 years ago

2 Replies

Obinutuzumab and Venetoclax

Hi all, Thought I’d give you an update since my last post. I had my consultation a couple of weeks ago and it was clear to my consultant that I needed...

Hi all, Thought I’d give you an update since my last post. I had my consultatio...

ALS27

•3 years ago

42 Replies

Remission after Venetoclax?

Just got off Venetoclax.. followed the Murano Trial. Now three weeks after being off medicine neck and armpits are a little sore. Don’t notice any lymph nodes...

Just got off Venetoclax.. followed the Murano Trial. Now three weeks after being...

Mav74

•3 years ago

12 Replies

COVID -19 Vaccinations for CLL patients ?

Here is an opinion from my CLL expert doctor copied from https://groups.io/g/CLLSLL/message/30481?reply=1 with permission from the writer Richard Furman MD ...

Here is an opinion from my CLL expert doctor copied from https://groups.io/g/CLL...

lankisterguy

Volunteer•3 years ago

18 Replies

Vaccine Covid 19

Hello CLL group, how are you after such a long time. I feel fine after 4 years on ibrutinib, so in that sense, that are good news for 17p CLL patients. In this...

Hello CLL group, how are you after such a long time. I feel fine after 4 years o...

Bixilon

•3 years ago

8 Replies

Leg Cramps

I was diagnosed in 2012. Multiple treatments, now on acalabrutinib with good results. Some headaches and dizziness are the side effects. My problem has been...

I was diagnosed in 2012. Multiple treatments, now on acalabrutinib with good res...

BallyB

•3 years ago

16 Replies

Sezary Syndrome

Does anyone know if there is a support group specific to this (Sezary Syndrome). Any info welcomed, thanks in advance.

Does anyone know if there is a support group specific to this (Sezary Syndrome)....

Mild-Rover

•3 years ago

2 Replies

14 day quarantine from child who has received live flu vaccine needed?

My 11 year old daughter, who lives with my ex is getting a flu jab tomorrow. The school nurse has advised us not to have contact for 14 days as it is a live...

My 11 year old daughter, who lives with my ex is getting a flu jab tomorrow. The...

Troglodytes

•3 years ago

13 Replies

Life Insurance

Hi, Have been lurking for some time now, always read the daily posts but don't remember if I have never posted before. I'm interested to hear if anyone has...

Hi, Have been lurking for some time now, always read the daily posts but don't ...

TonyH1329

•3 years ago

2 Replies

YIKES

Yikesssss! Now I went and made myself nervous! I've been advised by 2 doctors (my family doctor & my internist) to most definitely get the vaccine for...

Yikesssss! Now I went and made myself nervous! I've been advised by 2 doctors (m...

Oceanbly

•3 years ago

20 Replies

Expert Access Second Opinion from CLL Society - PRICELESS!

Husband and I were so fortunate this morning to have a consultation with our CLL expert Dr. Matthew Davids from Dana Farber in Boston. We will be forever...

Husband and I were so fortunate this morning to have a consultation with our CLL...

Palmetto

•3 years ago

25 Replies

Revisiting Ibrutinib , but then no Venetoclax?

I am a decade into the CLL journey with non mutated 11q deletion - woohoo! I went through FCR in 2014 and am now relapsing, so gearing up for the next round...

I am a decade into the CLL journey with non mutated 11q deletion - woohoo! I wen...

Me2AsWell

•3 years ago

3 Replies

Ibrutinib: Is it best used early in treatment, or after other treatment options have failed?

#CLLSociety During ASH 2019, our own Dr. Brian Koffman interviewed Dr. Paul Barr, Associate Professor of Medicine at the Wilmot Cancer Institute, in Rochester,...

#CLLSociety During ASH 2019, our own Dr. Brian Koffman interviewed Dr. Paul Barr...

bkoffman

CLL CURE Hero•3 years ago

4 Replies

LDH Results

I have been on impruvica since April 13 and after 4 or 5 months it was helping my blood counts . This past November 12 I needed mohs surgery to remove basil...

I have been on impruvica since April 13 and after 4 or 5 months it was helping m...

Kmegood

•3 years ago

2 Replies

High LDH

Hi guys has anyone here gotten a high ldh level mine been 889 and im a sickler "sickle cell" and been on voricanazole for 6 months for an infection.but also...

Hi guys has anyone here gotten a high ldh level mine been 889 and im a sickler "...

Heya26

•3 years ago

2 Replies

Venetoclax and Seville oranges

Apologies if this has been asked before, but I am just thinking about making a Christmas cake. I know people on venetoclax can’t eat Seville oranges or...

Apologies if this has been asked before, but I am just thinking about making a C...

Fowey2009

•3 years ago

16 Replies

Antibody Therapy vs Vaccine

With AstraZeneca's announcement today of positive high-level results from an interim analysis of clinical trials of their vaccine candidate AZD1222, I felt...

With AstraZeneca's announcement today of positive high-level results from an in...

gardening-girl

•3 years ago

9 Replies

5 months on Ibrutinib with side effects

My mum started Ibrutinb and seemed to be getting on OK for a while. She recently had palpitations and chest pain so was checked. Her heart is fine but her Dr...

My mum started Ibrutinb and seemed to be getting on OK for a while. She recently...

mouseygirl

•3 years ago

23 Replies

Nature

I took this picture yesterday on our walk, nature seems confused by the warm weather. The Camelias round here don't usually flower until at least February!!

I took this picture yesterday on our walk, nature seems confused by the warm wea...

Floxxy

•3 years ago

5 Replies

Increasing LDH

Hi everyone! I’m a longtime reader, first time poster. I was diagnosed with CLL at 45, waited and watched for one year, then started treatment due to...

Hi everyone! I’m a longtime reader, first time poster. I was diagnosed with CLL...

RSSpoke

•3 years ago

10 Replies

Difficult sleeping -Venteclax

Wife 2nd week venteclax. Taking at 7pm and having difficulty in sleeping. Any input on this side effect?

Wife 2nd week venteclax. Taking at 7pm and having difficulty in sleeping. Any in...

GL64

•3 years ago

15 Replies

Obinutuzumab and Venetoclax cleared for use in UK

If I read this right, it seems that this is the new go-to combination in the UK? I think I read somewhere that this is also sometimes combined with ibrutinib...

If I read this right, it seems that this is the new go-to combination in the UK?...

Research123

•3 years ago

2 Replies

85 year old not coping with nor responding to treatment

Hi, I am new. My Dad has CLL which has just become symptomatic after 5 years. He has had 3 treatments of Obinutuzimab and Chlorambucil , the first one made...

Hi, I am new. My Dad has CLL which has just become symptomatic after 5 years. H...

TKB2020

•3 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for November 2020

Reclast for osteoporosis as CLL patient

Superfood Powders?

Immune Booster

Shingles vaccine

Desperate for answers please...

Neutropenia and Imbruvica

Fenbendazol - worth a try?

Vaccination program training & guidance materials

Obinutuzumab and Venetoclax

Remission after Venetoclax?

COVID -19 Vaccinations for CLL patients ?

Vaccine Covid 19

Leg Cramps

Sezary Syndrome

14 day quarantine from child who has received live flu vaccine needed?

Life Insurance

YIKES

Expert Access Second Opinion from CLL Society - PRICELESS!

Revisiting Ibrutinib , but then no Venetoclax?

Ibrutinib: Is it best used early in treatment, or after other treatment options have failed?

LDH Results

High LDH

Venetoclax and Seville oranges

Antibody Therapy vs Vaccine

5 months on Ibrutinib with side effects

Nature

Increasing LDH

Difficult sleeping -Venteclax

Obinutuzumab and Venetoclax cleared for use in UK

85 year old not coping with nor responding to treatment

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