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CLL Support

22,532 members • 38,709 posts

All posts for October 2019

Starting Treatment

I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I...

I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My nu...

12Caine12

•5 years ago

16 Replies

CLL, the marathon, and me: I did it!

Hi everyone, I promised to update you. I finished the Yorkshire marathon last Sunday, in 6hrs 17min 40sec, 10 minutes better than London. I have shown what...

Hi everyone, I promised to update you. I finished the Yorkshire marathon last S...

Davdow

•5 years ago

11 Replies

MD Anderson doctors for CLL

Hi all, I try to make an appointment with Dr Wierda at MD Anderson but he’s not available at least for a month. Do you recommend any other doctors? Dr...

Hi all, I try to make an appointment with Dr Wierda at MD Anderson but he’s not...

writepa

•5 years ago

13 Replies

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10-23-19 update

We had an appointment today with the oncologist. He was happy with my husband progress on the Gazyva. My husband will have Two more infusions this year. Dr....

We had an appointment today with the oncologist. He was happy with my husband pr...

AuntHelen

•5 years ago

4 Replies

Medicare Advantage (some ins. co call it Plan C) U.S.

Here is the clearest information on MA I have seen recently--or maybe my head is a bit clearer today. You can use the list beside the article to choose any...

Here is the clearest information on MA I have seen recently--or maybe my head is...

cllady01

Former Volunteer•5 years ago

3 Replies

Vecabrutinib clinical trial?

Does anyone have any experience on the vecabrutinib clinical trial from a company called sunesis? I believe it is being developed for those who are or have...

Does anyone have any experience on the vecabrutinib clinical trial from a compan...

Asclepiusone

•5 years ago

7 Replies

Sequential and combination treatments with novel agents in chronic lymphocytic leukemia (including target illustration) - Oct 2019

This paper by Moritz Fürstenau, Michael Hallek and Barbara Eichhorst, per the recent post by avzuclav, provides a very readable overview of the current...

This paper by Moritz Fürstenau, Michael Hallek and Barbara Eichhorst, per the re...

AussieNeil

Administrator•5 years ago

4 Replies

Does anyone know if Medicare Part D covers venetoclax?

Does medicare part D cover venetoclax?

Lulu8581

•5 years ago

8 Replies

Soy beans (edamame) ?

I wonder what is known about soy beans (edamame) in the diet, if one has CLL and takes Imbruvica ? (Also in general the pro and con in relation to soy)

I wonder what is known about soy beans (edamame) in the diet, if one has CLL and...

vog292

•5 years ago

4 Replies

ASH 2019

The 2019 ASH meeting is approximately two months away. Is there any exciting news anticipated at this year’s meeting? Perhaps my memory is incorrect but it...

The 2019 ASH meeting is approximately two months away. Is there any exciting new...

HopeME

•5 years ago

6 Replies

Remission should be the holy grail

My wife is 13q mutated and started Ibrutinib as a first line treatment in January at 48 years old after 5 years of W&W This choice was made over chemo because...

My wife is 13q mutated and started Ibrutinib as a first line treatment in Januar...

Sergi

•5 years ago

42 Replies

PJP prophylaxis may be unnecessary for CLL patients on BTK inhibitors

From a report from the recent Edinburgh iWCLL 2019, "Routine empiric prophylaxis against pneumocystis jiroveci pneumonia (PJP) may be unwarranted in chronic...

From a report from the recent Edinburgh iWCLL 2019, "Routine empiric prophylaxis...

AussieNeil

Administrator•5 years ago

3 Replies

Accelerated Dental Decay

Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP, intrathecal methraxoate)? Is this likely to be an effect of the cancer; a...

Any info on accelerated dental decay following CLL, lymphoma and/or chemo (RCHOP...

MaitreD

•5 years ago

12 Replies

Boosting low platelet count

Came across the Himalaya product the other day. Has anyone taken this and if so was it useful? Thanks

Came across the Himalaya product the other day. Has anyone taken this and if so ...

MarmiteCLL

•5 years ago

15 Replies

Final BMB on AVO Trial Tomorrow

Hi friends, Well, it’s been a great 14 months on the Dana-Farber Acalabrutinib, Obinutuzumab, and Venetoclax trial. I’ve been MRD- (blood and marrow) since...

Hi friends, Well, it’s been a great 14 months on the Dana-Farber Acalabrutinib,...

Lily_Pad_Master

•5 years ago

18 Replies

Leg and shoulder pain

Hi is there any advice for leg cramps and shoulder pain my boyfriend suffers really bad docs won't do nothing he's on w&w 2 yrs now with his lymph nodes...

Hi is there any advice for leg cramps and shoulder pain my boyfriend suffers rea...

Hidden

•5 years ago

18 Replies

Pip

Has anyone on here claimed personal independence payment for cll?

Hidden

•5 years ago

6 Replies

Bumps

I have CLL for about 20 years , and my first treatment was about one year ago. I’m on IMBRUVICA 420 mg. Has anyone ever experienced little red itchy bumps on...

I have CLL for about 20 years , and my first treatment was about one year ago. I...

Jaming

•5 years ago

51 Replies

Cyst-like lump on chin

Hi everyone, apologies if there have been posts about this before (searched but couldn’t find any), but is anyone suffering from cyst-like lumps on their...

Hi everyone, apologies if there have been posts about this before (searched but...

JackieMcC

•5 years ago

8 Replies

Zanubrutinib, Obinutuzumab and Venetoclax. Front line Clinical Trial.

For those who may have an interest, I started on the BOVEN clinical trial at Sloan Kettering. Trial aim is to achieve MRD with a long remission. People at...

For those who may have an interest, I started on the BOVEN clinical trial at Sl...

Awksom

•5 years ago

40 Replies

Symptoms

Hi Everyone I'm starting treatment for first time next week. Afraid of the unknown. I will be receiving Obinutuzumab and Venetoclax. What are the main...

Hi Everyone I'm starting treatment for first time next week. Afraid of the unkn...

booper57

•5 years ago

11 Replies

MD Anderson/Mayo or Peter MacCallum for treatment?

Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, enlarged spleen 20 cm and enlarged liver 17 cm. 70% lymphocytes in bone marrow....

Hi all, My husband is just diagnosed with CLL with WBC at 49, Platelet at 77, e...

writepa

•5 years ago

67 Replies

Ibrutinib / Venetoclax Journey

I visited the Chrisite yesterday for my three monthly checkup. This time it was to the haematology department. For those new on here I’m on the Clarity trial...

I visited the Chrisite yesterday for my three monthly checkup. This time it was...

Oleboyredw-uk

•5 years ago

12 Replies

Shingles and watch and wait

I am 7 years into watch and wait- no symptoms other than steadily increasing wbc(. 200now) . Last week diagnosed with shingles and got antiviral medication ,...

I am 7 years into watch and wait- no symptoms other than steadily increasing wbc...

Drayton1

•5 years ago

6 Replies

Global blood supply runs low - and that's a worry for those with CLL

A study funded by the National Institutes of Health reports that "Nearly two-thirds of countries worldwide have an insufficient supply of blood for...

A study funded by the National Institutes of Health reports that "Nearly two-thi...

AussieNeil

Administrator•5 years ago

5 Replies

CLL RISE

Hello everyone 😊. I am new here and found your comments interesting. I also have CLL for 6 years now, where since June 2019 it's taken a conciderable rise. I...

Hello everyone 😊. I am new here and found your comments interesting. I also hav...

tamerfilly

•5 years ago

3 Replies

First line treatment?

I went to a CLL specialist seminar on CLL a few days ago , this apparently the treatment plans if youre ready to be treated. Any comments ?

I went to a CLL specialist seminar on CLL a few days ago , this apparently the t...

Canuck901

•5 years ago

15 Replies

First line treatment?

I went to a CLL specialist seminar on CLL a few days ago , this apparently the treatment plans if youre ready to be treated. Any comments ?

I went to a CLL specialist seminar on CLL a few days ago , this apparently the t...

Canuck901

•5 years ago

4 Replies

When Venetoclax is used in Canada.

Any comments , this is when they recommend Venetoclax in Canada, The cost is 100% covered by healthcare

Any comments , this is when they recommend Venetoclax in Canada, The cost is 10...

Canuck901

•5 years ago

16 Replies

Starting Treatment Dilemma

I saw my Oncologist yesterday and was told that I should expect to have treatment starting sometime in the upcoming year. I kinda thought I was doing pretty...

I saw my Oncologist yesterday and was told that I should expect to have treatmen...

Par3

•5 years ago

37 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for October 2019

Starting Treatment

CLL, the marathon, and me: I did it!

MD Anderson doctors for CLL

10-23-19 update

Medicare Advantage (some ins. co call it Plan C) U.S.

Vecabrutinib clinical trial?

Sequential and combination treatments with novel agents in chronic lymphocytic leukemia (including target illustration) - Oct 2019

Does anyone know if Medicare Part D covers venetoclax?

Soy beans (edamame) ?

ASH 2019

Remission should be the holy grail

PJP prophylaxis may be unnecessary for CLL patients on BTK inhibitors

Accelerated Dental Decay

Boosting low platelet count

Final BMB on AVO Trial Tomorrow

Leg and shoulder pain

Pip

Bumps

Cyst-like lump on chin

Zanubrutinib, Obinutuzumab and Venetoclax. Front line Clinical Trial.

Symptoms

MD Anderson/Mayo or Peter MacCallum for treatment?

Ibrutinib / Venetoclax Journey

Shingles and watch and wait

Global blood supply runs low - and that's a worry for those with CLL

CLL RISE

First line treatment?

First line treatment?

When Venetoclax is used in Canada.

Starting Treatment Dilemma

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