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CLL Support

22,532 members • 38,709 posts

All posts for June 2018

Joint Pain

What is the cause of joint pain with ibrutinib?

ibrutinibpain

•6 years ago

3 Replies

Not MRD- yet

Although a full remission due to the excellent synergy of Ibrutinib (9 periods) and Venetoclax (6 periods) there is still a level of approx 10 percent of cll...

Although a full remission due to the excellent synergy of Ibrutinib (9 periods) ...

Yvbb

•6 years ago

13 Replies

Imbruvica and Sinus Issues

My husband has been on Imbruvica for 54 days and developed a Cold (Sinus Infection) two weeks ago and just can’t seem to shake it. Oncologist ordered Zpack...

My husband has been on Imbruvica for 54 days and developed a Cold (Sinus Infecti...

Sis1Ap3

•6 years ago

18 Replies

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NIH CLL Clinical Study

Fairly recent CLL dx, Stage 0 RAI. In process of joining NIH in Bethesda, Maryland long term tissue study for CLL. Would love to hear of experiences with other...

Fairly recent CLL dx, Stage 0 RAI. In process of joining NIH in Bethesda, Maryla...

Friverapt

•6 years ago

8 Replies

Advice please

Sorry I have some questions that maybe you can answer. The nurse asked me as she always does at my last appointment on the 13th if I had any pain and yes I do...

Sorry I have some questions that maybe you can answer. The nurse asked me as she...

Mamawof25

•6 years ago

13 Replies

What to know about traveling with Medicare (for USA Patients)

Planning to travel abroad this summer? Before you go, remember to look into Medicare coverage outside the United States. If you have Medicare Part A (Hospital...

Planning to travel abroad this summer? Before you go, remember to look into Med...

lankisterguy

Volunteer•6 years ago

5 Replies

Need some feedback...

After my last visit with my onco it was decided that I still do not need IVIG and to take an antibiotic and viral medicine when needed - Visited a new dentist...

After my last visit with my onco it was decided that I still do not need IVIG an...

Stretch1

•6 years ago

9 Replies

Day 2 round 1

Hi, just home from my stay in hospital. Received another rasburicane drip last night. Rest of rituxan and support meds this morning. Took antisickness and...

Hi, just home from my stay in hospital. Received another rasburicane drip last ...

lucyjack

•6 years ago

11 Replies

Any opinions on these results before I see the specialist next week?

I had a bone marrow biopsy done and the flow cytometry results were posted on the hospital website today. I don't see my doctor until next week so I...

I had a bone marrow biopsy done and the flow cytometry results were posted on th...

hhk50

•6 years ago

2 Replies

Study shedding more light on how Ibrutinib works

Interesting paper on the mode of action of Ibrutinib and idealisb. This might explain some of the clinical manifestations of treatment, and would support the...

Interesting paper on the mode of action of Ibrutinib and idealisb. This might e...

AdrianUK

•6 years ago

17 Replies

Ibrutinib petition

Hi all Firstly sorry for the repeat as i know many of you have seen my petition about getting NHS England to follow NICE guidelines which would enable me to be...

Hi all Firstly sorry for the repeat as i know many of you have seen my petition ...

Mick491

•6 years ago

43 Replies

Treated with Venetoclax with rituximab for relapsed or refractory CLL then Bloodwise need help for the NICE appraisal on 22 Jun.

There is a health technology appraisal request that Bloodwise need help with. The request is for a NICE appraisal of venetoclax in combination with rituximab...

There is a health technology appraisal request that Bloodwise need help with. Th...

Myrddin

•6 years ago

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Will reducing Ibrutinib dosage increase neutrophils?

We have not been able to see our regular oncology doctor for a month now. So, when a substitute doctor from Miami (who is a hematologist and oncologist)...

We have not been able to see our regular oncology doctor for a month now. So, wh...

kathymac52

•6 years ago

24 Replies

Neutrophils level

Hi guys my husbands FCR treatment has be postponed the past three week due to him neutrophils levels being low any recommendations as docs saying will come up...

Hi guys my husbands FCR treatment has be postponed the past three week due to hi...

Sailormoon11

•6 years ago

8 Replies

Platelet count

My Platelet count is 126 can you confirm This is normal or not.

bnnitya

•6 years ago

7 Replies

My new CLL Treatment

My oncologist is recommending a drip of Rituxan and Bendamustine for my CLL treatment to replace Imbruvica since I had heart issues with this drug. Is anyone...

My oncologist is recommending a drip of Rituxan and Bendamustine for my CLL trea...

umpireman

•6 years ago

10 Replies

Medical update

Hi all I know some of you have been following my story since being refused treatment with Ibrutinib as NHS England decided not to follow NICE guidelines. I'm...

Hi all I know some of you have been following my story since being refused trea...

Mick491

•6 years ago

59 Replies

Round one started

Hi all, had two bags saline and raspuricaine over night. Started with 300 rituxan this morning. No drip tonight but 300 more rituxan tomorrow along with the...

Hi all, had two bags saline and raspuricaine over night. Started with 300 rituxa...

lucyjack

•6 years ago

2 Replies

daughter

I only joined this group to get information. My daughter had APlastic Anemia . She had two lots of stem cells but died 2017 January . She did what she wanted...

I only joined this group to get information. My daughter had APlastic Anemia . S...

fastball

•6 years ago

11 Replies

Cll with lung copd/asthma problems

Diagnose with cll which at beginning stages but wonder how treatments would affect my weak lungs? I HAVE COPD/ASTHMA CAN ANYONE TELL ME THEIR EXPERIENCE...

Diagnose with cll which at beginning stages but wonder how treatments would affe...

pg1122921

•6 years ago

1 Reply

Iron infusion?

Started ibrutinib with a HGB of 6.1 had transfusion and HGB has slowly been rising over the past 4 months and is now 10.1. I was excited with the 10.1...

Started ibrutinib with a HGB of 6.1 had transfusion and HGB has slowly been risi...

joycecanada

•6 years ago

11 Replies

Intense itching upper arms,mostly nights

I get the most intense itch...its embarrassing. My upper arms itch so bad they feel like bugs are on them, bitting me...no bugs....i cant figure it out...its...

I get the most intense itch...its embarrassing. My upper arms itch so bad they f...

Torid1361

•6 years ago

39 Replies

Does anybody know if you have to inform dvla if you have cll

Only been asked the question

Jlee123

•6 years ago

2 Replies

CLL Society Alert- Toronto Support Group Poll, Dr. Hallek interview, European Hematology Assoc. & Patient meetings in person and online.

While the CLL Society has a USA foundation ( just as the HU CLL SA started in UK) this month's email update has some articles that may be of interest to...

While the CLL Society has a USA foundation ( just as the HU CLL SA started in UK...

lankisterguy

Volunteer•6 years ago

2 Replies

No spleen

Hey a have raised cpr levels n also raised wcc, wot exactly is this,a have also just had. My spleen removed so can't fight infection Alli 🙃

Hey a have raised cpr levels n also raised wcc, wot exactly is this,a have also ...

Alli1976

•6 years ago

1 Reply

Mbl cll like

Hello ! This is my first post !! 1 and a half year ago at the age of 29 i had a blood test that showed my wbc around 13000 and alc around 7000. After a flow...

Hello ! This is my first post !! 1 and a half year ago at the age of 29 i had a ...

Ioti

•6 years ago

9 Replies

Ibrutinib only (FLAIR) - 3 months in

Clinic appointment this afternoon. All going well. My Neutropils has gone up to .8, and all the rest are going the rightway. The doctor said 'slowness of the...

Clinic appointment this afternoon. All going well. My Neutropils has gone up to ...

zaax

•6 years ago

4 Replies

Secrets of Cancer-Fighting Gene Uncovered

Welcome progress for the poor prognosis folks. WWW...

ThreeWs

•6 years ago

7 Replies

Just Finished my First Round FCR!

It still feels like an out of body experience. I was on W&W 12 years with no pains/ illnesses, etc. I was fortunate to have my first treatment admitted to...

It still feels like an out of body experience. I was on W&W 12 years with no pai...

GMa27

•6 years ago

58 Replies

Is 15.200 classed has a high reading with cll

My reading was 15.200 white cells is that high/low

Jlee123

•6 years ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2018

Joint Pain

Not MRD- yet

Imbruvica and Sinus Issues

NIH CLL Clinical Study

Advice please

What to know about traveling with Medicare (for USA Patients)

Need some feedback...

Day 2 round 1

Any opinions on these results before I see the specialist next week?

Study shedding more light on how Ibrutinib works

Ibrutinib petition

Treated with Venetoclax with rituximab for relapsed or refractory CLL then Bloodwise need help for the NICE appraisal on 22 Jun.

Will reducing Ibrutinib dosage increase neutrophils?

Neutrophils level

Platelet count

My new CLL Treatment

Medical update

Round one started

daughter

Cll with lung copd/asthma problems

Iron infusion?

Intense itching upper arms,mostly nights

Does anybody know if you have to inform dvla if you have cll

CLL Society Alert- Toronto Support Group Poll, Dr. Hallek interview, European Hematology Assoc. & Patient meetings in person and online.

No spleen

Mbl cll like

Ibrutinib only (FLAIR) - 3 months in

Secrets of Cancer-Fighting Gene Uncovered

Just Finished my First Round FCR!

Is 15.200 classed has a high reading with cll

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