Posts - CLL Support | HealthUnlocked

CLL Support

22,623 members • 38,852 posts

All posts for September 2019

Metformin and early stage cll

Hi I just got diagnosed with cll and am at watch and wait stage - white blood count just come down from 40000 to 26000. Anyone any idea if metformin is helpful...

Hi I just got diagnosed with cll and am at watch and wait stage - white blood co...

Research123

•5 years ago

15 Replies

Second day of the CLL Advocates Network Meeting, CLL Horizons 2019

Great conference here in Edinburgh. Reports to follow from fabulous speakers, Dr Lamanna has just started to speak. Jackie

Great conference here in Edinburgh. Reports to follow from fabulous speakers, Dr...

Jm954

Administrator•5 years ago

6 Replies

Does anyone here suffer from Dehydration and Fatigue?How do you handle this? I have CLL, on inbruvitca

wanna keep my job

kollock93

•5 years ago

11 Replies

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MOUTH SORES

I have just started DA+REPOCH after R-CHOP and RICE for N-H Lymphoma (after dealing with CLL for a few years) . These new treatment has given way to mouth...

I have just started DA+REPOCH after R-CHOP and RICE for N-H Lymphoma (after deal...

FeisalH

•5 years ago

3 Replies

Cll pain

Hi....has anyone experienced chest back and throat pain with CLL? Feels like a muscle spasm.....I have many large lymph nodes and just started treatment....I...

Hi....has anyone experienced chest back and throat pain with CLL? Feels like a m...

dcfrey645

•5 years ago

14 Replies

CLL sweats/menopause

CLL , Sweats : Is it likely that CLL is the culprit I am 52 yrs old, female. Could pre-menopause also be contributing to these. I get these during the day...

CLL , Sweats : Is it likely that CLL is the culprit I am 52 yrs old, female. C...

Carmen11

•5 years ago

12 Replies

Explanation for a child

Hi, I haven’t written here in a long time, but have checked in and kept up with posts. My husband was diagnosed 3 years ago and is on watch and wait. We are...

Hi, I haven’t written here in a long time, but have checked in and kept up with ...

Loves2walk

•5 years ago

35 Replies

Up&down

On monday I was on 3mo check up. My WBC and ALC were a little bit higher then in June. WBC was 17,4 (13,35 in June), ALC was 12,9 (9,95 in June). In April WBC...

On monday I was on 3mo check up. My WBC and ALC were a little bit higher then in...

tomster

•5 years ago

9 Replies

Mouth sores

I am on 4th cycle of Obinituzimab and Ibrutinib and now have 3 large sores on sides of mouth. Oral hygiene good. Have products for chemo patients. Neutrophils...

I am on 4th cycle of Obinituzimab and Ibrutinib and now have 3 large sores on si...

CLLmoxie

•5 years ago

27 Replies

Bilateral knee pain - Ibrutinib???

I am on 4th cycle of Obinituzimab + Ibrutinib and just started having bilateral knee pain (L>R). Since I am very sedentary and have not injured it, is it...

I am on 4th cycle of Obinituzimab + Ibrutinib and just started having bilateral ...

CLLmoxie

•5 years ago

3 Replies

Second opinion suggestions

My relative has not been doing well. His redblood cells are good quality, but much too few. His blood proteins are high. He has little CLL In his blood marrow....

My relative has not been doing well. His redblood cells are good quality, but mu...

Odale

•5 years ago

2 Replies

News from iwCLL, what it means for you

Dear CLL friends. In Edinburgh, Scotland this weekend CLL experts from around the world will meet to compare notes. A week later, Sat. 9/28, Patient Power will...

Dear CLL friends. In Edinburgh, Scotland this weekend CLL experts from around th...

andrewschorr

•5 years ago

5 Replies

Ibrutinib Shown to Cross the Blood-Brain Barrier in CNS Lymphoma

CNS CLL is very rare but this is good news for those unfortunate to have it. At 560mg it's a higher dose than CLL patients would normally have but necessary...

CNS CLL is very rare but this is good news for those unfortunate to have it. At...

Jm954

Administrator•5 years ago

5 Replies

Bone marrow test ?

Hi everybody My wife was diagnosed with CLL five years ago , she’s 13q delation mutated and started Imbruvica in January with excellent results since her...

Hi everybody My wife was diagnosed with CLL five years ago , she’s 13q delation...

Sergi

•5 years ago

29 Replies

Side effects of IMBRUVICA

I am 2 weeks in Imbruvica. Did someone say facial blotches can be a side-effect? What did they look like? Also my ankle is all bruised and swollen but I’m not...

I am 2 weeks in Imbruvica. Did someone say facial blotches can be a side-effect?...

dantetheinferno1

•5 years ago

22 Replies

Potential Early Drivers of Disease in Treatment-Naive CLL Identified

This study reinforces others regarding mutations that predict a short time to first treatment. I think those of us that are 11qdel are aware of the...

This study reinforces others regarding mutations that predict a short time to fi...

Jm954

Administrator•5 years ago

11 Replies

Do you know if imbruvica affects the reaction in the mosquito bites?

My brother is taking imbruvica for 15 months, and somes mosquitos bites his hand, and creates a great reaction, what its happen? Its normal? He dont have...

My brother is taking imbruvica for 15 months, and somes mosquitos bites his han...

Cgr2018

•5 years ago

16 Replies

Rosacea during IV treatment

I’m wondering if anyone else has had rosacea crop up well into treatment. I’m glancingly familiar with cutaneous B cell malignancies around the face so...

I’m wondering if anyone else has had rosacea crop up well into treatment. I’m g...

Psalm22-3

•5 years ago

12 Replies

Anyone in Melbourne Aus that have CLL interested in starting a support group where we meet once in a while?

If there are any others out there who live in Melbourne Australia with CLL- I noticed other places around the world have support groups that actually meet. Do...

If there are any others out there who live in Melbourne Australia with CLL- I n...

roszika

•5 years ago

3 Replies

Watch and Wonder, but Do-no matter what stage!!!

Time to post the wondrous things! The gratitude for all the new treatments out there, the friendship we discover on the website and the support we find with...

Time to post the wondrous things! The gratitude for all the new treatments out ...

Chic789

•5 years ago

12 Replies

Can I get a flu vaccination ?

I have CLL and take Imbruvica. After 10 cycles the Imbruvica produced excellent improvement, near normal range WBC 11, platelets 175 . Question: Can I get a...

I have CLL and take Imbruvica. After 10 cycles the Imbruvica produced excellent ...

vog292

•5 years ago

10 Replies

Is anyone in the EA9161 trial NCT03701282?

Hi Everyone, My numbers are really increasing- I’m scheduled to do the 3rd CBC in less than 3 weeks. The talks are getting more serious about starting a drug...

Hi Everyone, My numbers are really increasing- I’m scheduled to do the 3rd CBC i...

aquafinn

•5 years ago

5 Replies

Good news.

Hi All. Ken and I had our joint 3 monthly appointments on Thursday and glad to report that we are both doing well on Ibrutinib, my bloods are all back in...

Hi All. Ken and I had our joint 3 monthly appointments on Thursday and glad to r...

june65

•5 years ago

15 Replies

Use of MRD Status Following Obinutuzumab/Ibrutinib to Guide Subsequent Intensification of Therapy in CLL

August 6, 2019 In this 2-part, single-arm, open-label, multicenter trial (Clinical Trials.gov Identifier: NCT02666898), medically fit, adult patients with...

August 6, 2019 In this 2-part, single-arm, open-label, multicenter trial (Clinic...

Jm954

Administrator•5 years ago

13 Replies

Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place

Published: Saturday, Sep 14, 2019 During a presentation at the 2019 Society of Haematological Oncology Annual Meeting, Dr Jain said recent clinical trial...

Published: Saturday, Sep 14, 2019 During a presentation at the 2019 Society of H...

Jm954

Administrator•5 years ago

12 Replies

CLLAN Horizon and iwCLL Biannual Meeting

I am off to Scotland for the CLLAN meeting of CLL advocacy organizations from around the world where I am privileged to serve on the steering committee. Let me...

I am off to Scotland for the CLLAN meeting of CLL advocacy organizations from ar...

bkoffman

CLL CURE Hero•5 years ago

4 Replies

Murano trial

Does anybody know something about Murano-trial?

tomster

•5 years ago

2 Replies

Duvelisib Dosing Modification Does Not Compromise Efficacy in Heavily Pretreated CLL/SLL

Reducing or interrupting duvelisib (Copiktra) treatment does not increase toxicity or reduce outcomes with relapsed/refractory chronic lymphocytic...

Reducing or interrupting duvelisib (Copiktra) treatment does not increase toxici...

Jm954

Administrator•5 years ago

11 Replies

Mum newly diagnosed

My mum is 81 and has been diagnosed with CLL. She has no energy at all and after more tests is due to start on IB. Will her energy levels improve and what can...

My mum is 81 and has been diagnosed with CLL. She has no energy at all and after...

Nuttydogs

•5 years ago

10 Replies

Sidewhacked by Richter’s transformation twice: epilogue

About 5 short weeks ago I posted about my hubby being sidewhacked by RT for the 2nd time. His treatment using R-GDP was deemed best and he received 1 cycle. He...

About 5 short weeks ago I posted about my hubby being sidewhacked by RT for the ...

flyingfats

•5 years ago

50 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2019

Metformin and early stage cll

Second day of the CLL Advocates Network Meeting, CLL Horizons 2019

Does anyone here suffer from Dehydration and Fatigue?How do you handle this? I have CLL, on inbruvitca

MOUTH SORES

Cll pain

CLL sweats/menopause

Explanation for a child

Up&down

Mouth sores

Bilateral knee pain - Ibrutinib???

Second opinion suggestions

News from iwCLL, what it means for you

Ibrutinib Shown to Cross the Blood-Brain Barrier in CNS Lymphoma

Bone marrow test ?

Side effects of IMBRUVICA

Potential Early Drivers of Disease in Treatment-Naive CLL Identified

Do you know if imbruvica affects the reaction in the mosquito bites?

Rosacea during IV treatment

Anyone in Melbourne Aus that have CLL interested in starting a support group where we meet once in a while?

Watch and Wonder, but Do-no matter what stage!!!

Can I get a flu vaccination ?

Is anyone in the EA9161 trial NCT03701282?

Good news.

Use of MRD Status Following Obinutuzumab/Ibrutinib to Guide Subsequent Intensification of Therapy in CLL

Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place

CLLAN Horizon and iwCLL Biannual Meeting

Murano trial

Duvelisib Dosing Modification Does Not Compromise Efficacy in Heavily Pretreated CLL/SLL

Mum newly diagnosed

Sidewhacked by Richter’s transformation twice: epilogue

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