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CLL Support

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All posts for July 2019

First post-diagnosis check

Had my first blood work done since being diagnosed in March, WBC is 19,000, and platelets are 203. Next check up in December, so far so good😀

Had my first blood work done since being diagnosed in March, WBC is 19,000, and ...

Nettoots

•5 years ago

3 Replies

Nulasta and a large Spleen

My husband came home from the Hospital last night. He had two treatments of Gayzena (sp) Now he is has another due on Friday. They are ant him to come in...

My husband came home from the Hospital last night. He had two treatments of Gay...

AuntHelen

•5 years ago

24 Replies

MSKCC Trial

Is anyone by chance on the Boven 3-agent trial at Sloan Kettering? It involves BGB31-11(Zanabrutinib), Gazyva and Venetoclax? Thanks

Is anyone by chance on the Boven 3-agent trial at Sloan Kettering? It involves B...

Awksom

•5 years ago

1 Reply

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Dealing with follicular lymphoma

B"H New here, would love to hear from others who are on "watchful waiting" after a follicular lymphoma diagnosis... does any one with such a diagnosis know...

B"H New here, would love to hear from others who are on "watchful waiting" aft...

levigsc

•5 years ago

7 Replies

Kimchi pro or con ?

I take Imbruvica for CLL. Any information about effects of KIMCHI pro or con ?

vog292

•5 years ago

14 Replies

Walking as much as I can

Managed to walk the seven sisters yesterday on a lovely sunny day. Over the years since diagnosis I have managed to keep walking Photo for those not as lucky...

Managed to walk the seven sisters yesterday on a lovely sunny day. Over the year...

Myrddin

•5 years ago

17 Replies

Itchy skin

Good morning, My husband is on imbruvica and has developed a severe rash all over his body. He is constantly scratching and often times causes it to bleed....

Good morning, My husband is on imbruvica and has developed a severe rash all ov...

spinning1

•5 years ago

6 Replies

Shingles always a concern with CLL

One of the things I learned is that with CLL shingles is always a concern. Shingles are usually painful little blisters that occur in a dermatomal pattern (one...

One of the things I learned is that with CLL shingles is always a concern. Shing...

LovecuresCLL

•5 years ago

21 Replies

Pomegranates

Can not find good info on pomegranates and imbruvica-my 2nd home is a tiny farm -finally a bumper crop of my pomegranates --Anybody know of or have info on...

Can not find good info on pomegranates and imbruvica-my 2nd home is a tiny farm ...

wilhoitaz

•5 years ago

13 Replies

Chapped lips on Imbruvica

Has anyone who is on Imbruvica had trouble with extremely chapped lips. My husband has been on Imbruvica about 16 months with minimal side effects but has...

Has anyone who is on Imbruvica had trouble with extremely chapped lips. My husb...

Sis1Ap3

•5 years ago

12 Replies

LGL Leukaemia

Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd love to hear from you.

Has anyone been diagnosed with large granular lymphocytic leukaemia, if so I'd l...

GrannyTWest

•5 years ago

7 Replies

Thank you all!!!

Hello, a short summary.. After FCR in 2015 and BR in 2017, our doctor suggested my husband to start Ibrutinib since his lymph nodes in abdomen are almost...

Hello, a short summary.. After FCR in 2015 and BR in 2017, our doctor suggested...

aylinozel

•5 years ago

16 Replies

Hair Loss

Has anyone experienced hair loss from being anaemic?

GrannyTWest

•5 years ago

13 Replies

Two history lessons- the first on 50 years of treating CLL and the 2nd on cellular therapies including transplant and CAR-T

Last week we published an interview with Prof. Hoffbrand...

bkoffman

CLL CURE Hero•5 years ago

3 Replies

IGVH V3-21 and IGHJ Family J4

The vote is not in yet about my diagnosis--CLL or more likely SMZL. Meantime one lab reported this morning that I am unmutated and the gobble degoop in my...

The vote is not in yet about my diagnosis--CLL or more likely SMZL. Meantime one...

Sunfishjoy

•5 years ago

11 Replies

Multiple calcified granulomata; Go to Port?

multiple calcified granulomata.. on x-ray.. am looking to get infusions in near future... bronchitic cold not responding to Rocephin...wondering if to go...

multiple calcified granulomata.. on x-ray.. am looking to get infusions in near...

Butitisme

•5 years ago

7 Replies

Duration of Ibrutinib’s cycle

Please, ¿what means “ a cycle “in Ibrutinib treatment? ¿ means 24 hours? It’s a question of my insurance. Thanks.

Please, ¿what means “ a cycle “in Ibrutinib treatment? ¿ means 24 hours? It’s...

ENAMP

•5 years ago

17 Replies

Infrared sauna

Hi Everyone , I am going to a spa next month and wanted feedback on whether an infrared sauna or certain massages or wraps (seaweed ,mud, ) were off limits to...

Hi Everyone , I am going to a spa next month and wanted feedback on whether an ...

nitram120

•5 years ago

18 Replies

Mouth Thrush?

Hi New Friends, Has anyone experienced problems with mouth thrush before? I've had some weird rash for about 3 weeks that has gone undiagnosed despite 3...

Hi New Friends, Has anyone experienced problems with mouth thrush before? I've ...

ETFitz1

•5 years ago

24 Replies

A Possible LDL Cholesterol and CLL connection

I have an appointment with my oncologist in a few weeks and plan to bring up the referenced article on a possible LDL and CLL connection. Am going to ask for...

I have an appointment with my oncologist in a few weeks and plan to bring up the...

markjeep51

•5 years ago

10 Replies

Worried about low platelets - do I have Chronic Lymphocytic Leukemia? (CLL/SLL) When will I need treatment?

Bruising easily, cuts bleeding readily and taking a long time to stop, small, flat, pinhead sized red, purple or brown dots under the skin (petechiae) are all...

Bruising easily, cuts bleeding readily and taking a long time to stop, small, fl...

AussieNeil

Administrator•5 years ago

15 Replies

Wow!

Forum membership! 13,000 members Congratulations everyone, for making the forum the GO TO place for CLL support. I know it has been amazing for me. Thank you...

Forum membership! 13,000 members Congratulations everyone, for making the forum...

JigFettler

Volunteer•5 years ago

17 Replies

Update on husband's cll

Hello all just an update Went heamotology yesterday with my hubby and his white cell count has gone up to 89 thousand he is slightly anemic has now gone to...

Hello all just an update Went heamotology yesterday with my hubby and his white ...

Nikkij81

•5 years ago

2 Replies

Ibrutinib Plus Venetoclax in Relapsed/Refractory Chronic Lymphocytic Leukemia: Update on The CLARITY Study

Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We have some members who are in this important CLARITY Study in UK. CLARITY is a...

Published on line July 11, 2019, Accepted by JCO May 31 2019 Dr P Hillmen We hav...

Jm954

Administrator•5 years ago

14 Replies

Phase 2 study of acalabrutinib in ibrutinib intolerant patients with relapsed/refractory CLL

This is another study reporting that Acalabrutinib is effective in patients who are intolerant of Ibruitnib. This Phase 2 trial evaluated acalabrutinib, a...

This is another study reporting that Acalabrutinib is effective in patients who ...

Jm954

Administrator•5 years ago

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Afternoon Tea

Anyone in the Daventry area on Saturday 10th Aug 2.30-4.30, we're holding an afternoon tea raising funds for Bloodwise in Preston Capes Village Hall. Please...

Anyone in the Daventry area on Saturday 10th Aug 2.30-4.30, we're holding an aft...

tubbing

•5 years ago

3 Replies

New to Site

I'm new to this site but knowingly living with and being treated for CLL for 12 years. I've been on Imbruvica for 5 years. This site was a great find as I'm...

I'm new to this site but knowingly living with and being treated for CLL for 12 ...

ETFitz1

•5 years ago

40 Replies

Experience with Fludarabine & Rituximab?

Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doctor recently told her that she needs to begin treatment. He recommended her to...

Hi, My mom (now 62 yrs old) was diagnosed with CLL about 5+ yrs ago, and her doc...

Dolce1

•5 years ago

12 Replies

Survey about treatment

Many of the questions are not relevant to me. I have not had any treatment and hope not to for many years. I am totally happy with the NHS.

Many of the questions are not relevant to me. I have not had any treatment and h...

kitchengardener

•5 years ago

6 Replies

Ibruvica

I'm on my 5th week and was wondering if I can swim in the pool and how much sun can I get. Naturally, I wont be in the sun for more than an hour or so.

I'm on my 5th week and was wondering if I can swim in the pool and how much sun ...

oso7672

•5 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2019

First post-diagnosis check

Nulasta and a large Spleen

MSKCC Trial

Dealing with follicular lymphoma

Kimchi pro or con ?

Walking as much as I can

Itchy skin

Shingles always a concern with CLL

Pomegranates

Chapped lips on Imbruvica

LGL Leukaemia

Thank you all!!!

Hair Loss

Two history lessons- the first on 50 years of treating CLL and the 2nd on cellular therapies including transplant and CAR-T

IGVH V3-21 and IGHJ Family J4

Multiple calcified granulomata; Go to Port?

Duration of Ibrutinib’s cycle

Infrared sauna

Mouth Thrush?

A Possible LDL Cholesterol and CLL connection

Worried about low platelets - do I have Chronic Lymphocytic Leukemia? (CLL/SLL) When will I need treatment?

Wow!

Update on husband's cll

Ibrutinib Plus Venetoclax in Relapsed/Refractory Chronic Lymphocytic Leukemia: Update on The CLARITY Study

Phase 2 study of acalabrutinib in ibrutinib intolerant patients with relapsed/refractory CLL

Afternoon Tea

New to Site

Experience with Fludarabine & Rituximab?

Survey about treatment

Ibruvica

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